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1

Pigozzi, Fabio, and Vincenzo Denaro. "Elderly or ageless? Physical Activity in the Aged Orthopaedic Patient." Journal of Clinical Medicine 9, no. 10 (October 10, 2020): 3243. http://dx.doi.org/10.3390/jcm9103243.

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Lilleheie, Ingvild, Jonas Debesay, Asta Bye, and Astrid Bergland. "Experiences of elderly patients regarding participation in their hospital discharge: a qualitative metasummary." BMJ Open 9, no. 11 (November 2019): e025789. http://dx.doi.org/10.1136/bmjopen-2018-025789.

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BackgroundAgeing patients are discharged from the hospital ‘quicker and sicker’ than before, and hospital discharge is a critical step in patient care. Older patients form a particularly vulnerable group due to multimorbidity and frailty. Patient participation in healthcare is influenced by government policy and an important part of quality improvement of care. There is need for greater insights into the complexity of patient participation for older patients in discharge processes based on aggregated knowledge.ObjectiveThe aim of this study was to review reported evidence concerning the experiences of older patients aged 65 years and above regarding their participation in the hospital discharge process.MethodsWe conducted a qualitative metasummary. Systematic searches of Medline, Embase, Cinahl, PsycINFO and SocINDEX were conducted. Data from 18 studies were included, based on specific selection criteria. All studies explored older patients’ experience of participation during the discharge process in hospital, but varied when it came to type of discharge and diagnosis. The data were categorised into themes by using thematic analysis.ResultsOur analysis indicated that participation in the discharge process varied among elderly patients. Five themes were identified: (1) complexity of the patients state of health, (2) management and hospital routines, (3) the norm and preference of returning home, (4) challenges of mutual communication and asymmetric relationships and (5) the significance of networks.ConclusionsCollaboration between different levels in the health systems and user-friendly information between staff, patient and families are crucial. The complexity of patient participation for this patient group should be recognised to enhance user involvement during discharge from hospital. Interventions or follow-up studies of how healthcare professionals can improve their communication skills and address the tension between client-centred goals and organisational priorities are requested. Organisational structure may need to be restructured to ensure the participation of elderly patients.
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Lee, Nam-Ju, Shinae Ahn, and Miseon Lee. "Mixed-method investigation of health consumers’ perception and experience of participation in patient safety activities." BMJ Open 10, no. 3 (March 2020): e035831. http://dx.doi.org/10.1136/bmjopen-2019-035831.

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ObjectivesThis study aimed to examine the factors influencing patient safety behaviours and to explore health customers’ experiences of patient participation in the healthcare system.DesignA mixed-method sequential explanatory design was employed using a survey and focus group interviews with health consumers.SettingThe study was conducted in South Korea using an online survey tool.ParticipantsSurvey data were collected from 493 Korean adults, aged 19 years or older, who had visited hospitals within the most recent 1 year. Focus group interviews were conducted in two groups of six participants each among those of the survey participants who agreed to participate in focus groups.Main outcome measuresThe survey measured the recognition of the importance of participation, extent of willingness to participate and experience of engaging in patient safety activities using a 4-point Likert scale. Qualitative data were collected through focus group interviews to explore health consumers’ experience of patient participation in hospital care, and the data were analysed using content analysis.ResultsThe average score for experience of participation in patient safety behaviours (2.13±0.63) was found to be lower than those of recognition of the importance of participation (3.27±0.51) and willingness to participate (2.62±0.52). By integrating the results of the quantitative and qualitative data analysis, the factors associated with the experience of engaging in healthcare behaviour included patient-related factors, illness-related factors, factors involving relationship between patients and healthcare providers, and healthcare environment factors.ConclusionsTo improve patient participation, it is necessary to create a healthcare environment in which patients can speak comfortably and to provide an education programme reflecting the patients’ needs. Also, healthcare providers must consider patients as partners for patient safety. Shared decision-making procedures and patient-centred care and patient safety policies should be established in hospitals.
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Levenberg, Kate, David N. Proctor, Stephan R. Maman, J. Carter Luck, Amanda J. Miller, Faisal Aziz, John F. Radtka, and Matthew D. Muller. "A prospective community engagement initiative to improve clinical research participation in patients with peripheral artery disease." SAGE Open Medicine 8 (January 2020): 205031212093091. http://dx.doi.org/10.1177/2050312120930915.

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Objective: Patients diagnosed with peripheral artery disease are difficult to recruit into clinical trials. However, there is currently no high-quality, patient-centered information explaining why peripheral artery disease patients choose to participate or not participate in clinical research studies. Methods: The current study was a prospective community engagement initiative that specifically asked patients with and without peripheral artery disease: (1) what motivates them to participate in clinical research studies, (2) their willingness to participate in different research procedures, (3) the barriers to participation, (4) preferences about study design, and (5) demographic and disease-related factors influencing participation. Data were gathered through focus groups ( n = 19, participants aged 55–79 years) and mailed questionnaires ( n = 438, respondents aged 18–85 years). Results: More than half of the respondents stated that they would be willing to participate in a study during evening or weekend time slots. Peripheral artery disease patients ( n = 45) were more willing than those without peripheral artery disease ( n = 360) to participate in drug infusion studies (48% versus 18%, p < 0.001) and trials of investigational drugs (44% versus 21%, p < 0.001). Motivating factors and barriers to participation were largely consistent with previous studies. Conclusion: Adults in our geographic region are interested in participating in clinical research studies related to their health; they would like their doctor to tell them what studies they qualify for and they prefer to receive a one-page advertisement that has color pictures of the research procedures. Peripheral artery disease patients are more willing than those without peripheral artery disease to participate in drug infusion studies, trials of investigational drugs, microneurography, and spinal/epidural infusions.
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Fredriksson, Mio, Max Eriksson, and Jonathan Q. Tritter. "Involvement that makes an impact on healthcare: Perceptions of the Swedish public." Scandinavian Journal of Public Health 46, no. 4 (November 1, 2017): 471–77. http://dx.doi.org/10.1177/1403494817738692.

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Aim: ‘Participation and influence in society’ is the first of 11 objective domains in Swedish public health policy. The aim of this article is to investigate the views of the Swedish general population on the impact of a range of health participation activities, and whether these views were associated with sociodemographic characteristics. Methods: The study utilizes a national representative survey of the Swedish population, aged 15 years and over ( n = 1500). Results: Apart from voting in regional elections – which most of the respondents believed to be an influential way to make improvements in healthcare (74%) – respondents believed more in individual patient activities than activities associated with adopting a citizen role and acting collectively. A majority of respondents believed in the impact of replying to patient surveys (67%), making a complaint (61%), talking directly to staff (58%) or changing their healthcare provider (54%). Fewer believed in the impact of joining a patient organization (46%), taking part in a citizen council (35%) or joining a political party (34%). Beliefs in impact increased with educational attainment and decreased with age. Conclusions: The results suggest people have more confidence in the impact of participating as individual patients rather than collectively and as citizens. To ensure that activities enable ‘participation and influence in society’, complementary opportunities for collective involvement that also take into account under-represented voices such as those with a low level of education need to be developed.
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Bonnin, Michel P., Jean-Charles Rollier, Jean-Christophe Chatelet, Tarik Ait-Si-Selmi, Julien Chouteau, Laurent Jacquot, Gerjon Hannink, Mo Saffarini, and Michel-Henri Fessy. "Can Patients Practice Strenuous Sports After Uncemented Ceramic-on-Ceramic Total Hip Arthroplasty?" Orthopaedic Journal of Sports Medicine 6, no. 4 (April 1, 2018): 232596711876392. http://dx.doi.org/10.1177/2325967118763920.

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Background: Patients are often concerned about returning to sports after total hip arthroplasty (THA). Purpose: To (1) evaluate sports participation and motivation rates in a large cohort of patients who underwent uncemented THA with ceramic-on-ceramic bearings and (2) determine whether patients’ participation was associated with their motivation for each sport, preoperative demographics, or patient-reported outcomes. Study Design: Case-control study; Level of evidence, 3. Methods: We surveyed 1310 patients (aged <75 years) who underwent uncemented ceramic-on-ceramic THA and collected levels of motivation and participation for 22 different sports as well as patient-reported outcome measure scores. A total of 1042 patients (1206 hips) returned questionnaires; the mean age at index surgery was 60.6 ± 8.8 years. Results: At least 51% of patients participated regularly or frequently in at least 1 light sport, 73% in at least 1 moderate sport, and 20% in at least 1 strenuous sport. Sports participation was strongly correlated with motivation ( r = 0.97, P < .001) but not with level of discomfort ( r = 0.22, P = .292). Participation in strenuous sports was significantly associated with age, body mass index, and sex. There were significant differences among patients who practiced various categories of sports as determined using the Oxford Hip Score ( P = .008), but not with regard to the Forgotten Joint Score ( P = .054). Conclusion: Only 20% of patients practiced strenuous sports regularly or frequently after THA, regardless of pain or discomfort. Participation in sports after THA is strongly correlated with motivation but not with level of discomfort. Longer term studies with a greater focus on complications and survival are necessary to determine whether high-impact sports compromise patient safety or implant longevity.
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Tang, Ni-Hu, Shang-Feng Tsai, Jaw-Horng Liou, Yuan-Hui Lai, Shih-An Liu, Wayne Huey-Herng Sheu, and Chieh Liang Wu. "The Association between the Participation of Quality Control Circle and Patient Safety Culture." International Journal of Environmental Research and Public Health 17, no. 23 (November 29, 2020): 8872. http://dx.doi.org/10.3390/ijerph17238872.

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Promoting patient safety culture (PSC) is a critical issue for healthcare providers. Quality control circles program (QCCP) can be used as an effective tool to foster long-lasting improvements on the quality of medical institution. The effect of QCCP on PSC is still unknown. This was a retrospective study conducted with matching data. A safety attitudes questionnaire (SAQ) was used for the evaluation of PSC. The association between all scores of six subscales of SAQ and the participation QCCP were analyzed with both the Mann–Whitney and Kruskal–Wallis tests. A total of 2718 valid questionnaires were collected. Most participants of QCCP were females (78.9%), nurses (52.6%), non-supervisors (92.2%), aged <40 years old (64.8%), degree of specialist or university graduates (78%), and with work experience of <10 years (61.6%). Of all participants, the highest scores were in the dimension of safety climate (74.11 ± 17.91) and the lowest scores in the dimension of working conditions (68.90 ± 18.84). The participation of QCCP was associated with higher scores in four dimensions, namely: teamwork climate (p = 0.006), safety climate (p = 0.037), perception of management (p = 0.009), and working conditions (p = 0.015). The participation or not of QCCP had similar results in the dimension of job satisfaction and stress recognition. QCCP was associated with SAQ in subjects with the following characteristics: female, nurse, non-supervisor, aged >50 years old, higher education degrees and with longer working experiences in the hospital. In this first study on the association between each dimension of SAQ and the implementation of QCCP, we found that QCCP interventions were associated with better PSC. QCCP had no benefits in the dimensions of job satisfaction and stress recognition.
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Fox, Louis, Harriet Wylie, Fidelma Cahill, Anna Haire, Joyce Kibaru, Saran Green, Catherine Hartley, Richard Sullivan, and Mieke Van Hemelrijck. "C-CRES: COVID-19 and cancer research engagement study." Journal of Clinical Oncology 38, no. 29_suppl (October 10, 2020): 182. http://dx.doi.org/10.1200/jco.2020.38.29_suppl.182.

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182 Background: Emerging reports suggest that continuation of clinical trials is feasible and safe even in hospitals admitting COVID-19 patients-given the appropriate safety procedures. However, to our knowledge no studies have yet addressed how to again engage patients in cancer research. C-CRES was developed to identify factors that may be affecting participation in cancer research during the COVID-19 pandemic. We aimed to examine patient-specific concerns around research participation. This information will help inform future strategies for mitigating the impact of COVID-19 on cancer research. Methods: Between 5-13 June 2020, we advertised an anonymous survey using our research group’s Twitter account and tagged a variety of cancer patient organisations/charities. Patients aged 18 with a current cancer diagnosis were eligible to participate and asked about their diagnosis/treatment, experience in cancer research, and beliefs about future cancer research participation given the COVID-19 pandemic. We specifically asked about potential concerns relating to research engagement. Results: A total of 75 patients filled out our questionnaire, of whom 89% were UK-based. 65% of respondents were male and the majority was of a white background (89%). The median age category was 60-69 years. 47% of patients had prostate cancer, 15% breast, 12% bladder, and 9% kidney cancer–a reflection of the cancer types our research team focuses on. Interestingly, 49% of participants had never participated previously in research. We therefore set out to make comparisons of patient concerns with regards to research participation during the COVID-19 outbreak between those with and without research experience. Those who had never taken part in research before were more likely to have concerns about currently being on cancer treatment (p=0.02) and about the type of cancer they had been diagnosed with (p≤0.05), with regards to taking part in cancer research during the current COVID-19 outbreak. Conclusions: Those with no prior experience of taking part in cancer research may be more likely to have concerns related to their cancer type and current treatment, in terms of participation during COVID-19. Efforts should be made to reassure potential cancer research participants about safety of participating during the COVID-19 pandemic.
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Gallo, Joseph J., Hillary R. Bogner, Joseph B. Straton, Katherine Margo, Pat Lesho, Peter V. Rabins, and Daniel E. Ford. "Patient Characteristics Associated with Participation in a Practice-Based Study of Depression in Late Life: The Spectrum Study." International Journal of Psychiatry in Medicine 35, no. 1 (March 2005): 41–57. http://dx.doi.org/10.2190/k5b6-dd8e-th1r-8gpt.

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Objective: An important component of generalizing study results to patients is the extent to which study participants adequately represent individuals targeted for the study. The Spectrum study of depression in older primary care patients was utilized to consider patient characteristics associated with nonparticipation. Method: Interviewers utilized a validated questionnaire to screen adults aged 65 years and older for depression who presented to one of the participating primary care practices in the Baltimore, Maryland area. Screening interviews included information about sociodemographic factors, functioning, health, and attitudes about depression and its treatment in order to compare participants with persons who declined. Results: In all, 2,560 adults aged 65 years and older were screened. Comparison of the characteristics of the patients who were eligible for the study ( n = 773) with patients who participated fully in the in-home evaluation ( n = 355) found that the study sample included proportionately more persons who: 1) were less than 80 years old; 2) completed high school; and 3) reported two or more visits to the practice site within six months of the interview. Among patients who were depressed, no significant differences were found in the characteristics of those who met study eligibility criteria and those who agreed to participate. Conclusions: Persons over the age of 80 years of age or those with less than a high school education may require tailored strategies for recruitment even when approached by a trained interviewer in a primary care doctor's office.
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Severe, Jennifer, Ruiqi Tang, Faith Horbatch, Regina Onishchenko, Vidisha Naini, and Mary Carol Blazek. "Factors Influencing Patients’ Initial Decisions Regarding Telepsychiatry Participation During the COVID-19 Pandemic: Telephone-Based Survey." JMIR Formative Research 4, no. 12 (December 22, 2020): e25469. http://dx.doi.org/10.2196/25469.

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Background Telepsychiatry enables patients to establish or maintain psychiatric care during the COVID-19 pandemic. Little is known about the factors influencing patients’ initial decisions to participate in telepsychiatry in the midst of a public health crisis. Objective This paper seeks to examine factors influencing patients’ initial decisions to accept or decline telepsychiatry immediately after the stay-at-home order in Michigan, their initial choice of virtual care modality (video or telephone), and their anticipated participation in telepsychiatry once clinics reopen for in-person visits. Methods Between June and August 2020, we conducted a telephone-based survey using a questionnaire comprising 14 quantitative and two qualitative items as part of a quality improvement initiative. We targeted patients who had an in-person appointment date that fell in the first few weeks following the Michigan governor’s stay-at-home order, necessitating conversion to virtual visits or deferment of in-person care. We used descriptive statistics to report individual survey responses and assess the association between chosen visit type and patient characteristics and future participation in telepsychiatry using multivariable logistic regression. Results A total of 244 patients whose original in-person appointments were scheduled within the first 3 weeks of the stay-at-home order in Michigan completed the telephone survey. The majority of the 244 respondents (n=202, 82.8%) initially chose to receive psychiatric care through video visits, while 13.5% (n=33) chose telephone visits and 1.2% (n=3) decided to postpone care until in-person visit availability. Patient age correlated with chosen visit type (P<.001; 95% CI 0.02-0.06). Patients aged ≥44 years were more likely than patients aged 0-44 years to opt for telephone visits (relative risk reduction [RRR] 1.2; 95% CI 1.06-1.35). Patient sex (P=.99), race (P=.06), type of insurance (P=.08), and number of previous visits to the clinic (P=.63) were not statistically relevant. Approximately half of the respondents (114/244, 46.7%) stated they were likely to continue with telepsychiatry even after in-person visits were made available. Telephone visit users were less likely than video visit users to anticipate future participation in telepsychiatry (RRR 1.08; 95% CI 0.97-1.2). Overall, virtual visits met or exceeded expectations for the majority of users. Conclusions In this cohort, patient age correlates with the choice of virtual visit type, with older adults more likely to choose telephone visits over video visits. Understanding challenges to patient-facing technologies can help advance health equity and guide best practices for engaging patients and families through telehealth.
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Plotnikoff, Ronald C., Fiona G. Stacey, Anna K. Jansson, Benjamin Ewald, Natalie A. Johnson, Wendy J. Brown, Elizabeth G. Holliday, Daniel Barker, and Erica L. James. "Does Patient Preference for Mode of Intervention Delivery Impact Intervention Efficacy and Attrition?" American Journal of Health Promotion 34, no. 1 (August 30, 2019): 63–66. http://dx.doi.org/10.1177/0890117119871002.

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Purpose: To explore whether there was a difference in objectively measured physical activity and study participation between people who received their preferred study group allocation (matched) and those who did not receive their preferred study group (mismatched). Design: Secondary data from the NewCOACH randomized controlled trial. Setting: Insufficiently active patients in the primary care settings in Sydney and Newcastle, Australia. Participants: One hundred seventy-two adults aged 20 to 81 years. Intervention: Participants indicated their intervention preference at baseline for (1) five face-to-face visits with an exercise specialist, (2) one face-to-face visit and 4 telephone follow-ups with an exercise specialist, (3) written material, or (4) slight-to-no preference. Participants were then allocated to an intervention group and categorized as either “matched” or “mismatched” based on their indications. Participants who reported a slight-to-no preference was categorized as “matched.” Measures: Daily step count as measured by pedometers and study participation. Analysis: Mean differences between groups in daily step count at 3 and 12 months (multiple linear regression models) and study participation at baseline, 3 months, and 12 months (χ2 tests). Results: Preference for an intervention group prior to randomization did not significantly (all P’s > .05 using 95% confidence interval) impact step counts (differences of <600 steps/day between groups) or study participation. Conclusion: Future research should continue to address whether the strength of preferences influence study outcome and participation and whether the study preferences change over time.
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Brown, Janine, Donna Goodridge, and Lilian Thorpe. "Factors Influencing Practitioner Choice in Nonparticipation in Medical Assistance in Dying." Innovation in Aging 4, Supplement_1 (December 1, 2020): 41. http://dx.doi.org/10.1093/geroni/igaa057.133.

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Abstract Canadians aged 65 and older compromised 79% of the individuals who chose a medically assisted death between January 1 – October 31, 2018. Despite public approval for MAID, and positive professional reception, few practitioners are participating in MAID care and the underlying factors influencing this require exploration. What are the factors considered by practitioners when contemplating MAID participation? Interpretive Description guided a qualitative, exploratory project. Data included semi-structured interviews with 35 practitioners who currently did not participate in MAID, interviewer field notes and reflective content. Data was analyzed through open coding, a constant comparative approach and thematic analysis. Participants are contemplating numerous endogenous and exogenous factors in determining care participation. The endogenous factors included philosophy of care, MAID/faith/spirituality congruence, the conceptualization of duty, comfort with death and previous life experiences. Within these factors, participants described knowing if MAID participation was, or was not, possible through a process of self-reconciliation. Those who thought MAID care participation may be possible, but yet were not participating, intentionally contemplated numerous exogenous factors including risk, time and practice factors, patient, family and community considerations, system structures, and visibility. Non-participation in MAID care is important to understand to support the self-determination of older adults who may consider MAID. Contemplating involvement in MAID care is complex with both numerous factors influencing practitioner choice. Practitioners require care options, safe passage, respect, model of care clarity, removal of practice barriers, open conversations, enhanced education opportunities and time to facilitate safe, supportive work environments and client care.
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Fox, Louis, Harriet Wylie, Fee Cahill, Anna Haire, Saran Green, Joyce Kibaru, Catherine Hartley, Richard Sullivan, and Mieke Van Hemelrijck. "Gender Differences in Concerns About Participating in Cancer Research During the COVID-19 Pandemic." Cancer Control 28 (January 1, 2021): 107327482198931. http://dx.doi.org/10.1177/1073274821989315.

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Introduction: The ongoing SARS-CoV-2 pandemic is having major effects on cancer research, including major reductions in participant accrual to cancer clinical trials. Existing research has indicated that these steep drops in accrual rates to cancer clinical trials may be disproportionately affecting women. We sought to determine if there were gender differences in a dataset collected to examine participants’ concerns about taking part in cancer research during the pandemic. Methods: Between 5-19 June 2020, we distributed a fully anonymized survey via social media. We contacted 85 UK cancer patient organizations/charities and asked them to share our questionnaire on their platforms, of which 26 obliged. Patients aged 18 with a cancer diagnosis were eligible to participate and asked about their clinical and demographic characteristics, concerns about research participation given the COVID-19 pandemic, anxiety levels measured using the Generalized Anxiety Disorder-7 (GAD-7) scale, amongst other questions. Anxiety levels and concerns about participating were compared between men and women using univariate and multivariate analyses. Results: 93 individuals, comprising n = 37 women and n = 56 men of various cancer types, provided survey responses. Independent t-tests showed that women reported higher anxiety scores, and concerns about participating in cancer research during COVID-19, than men. Linear regression analyses showed that anxiety scores predicted concerns about research participation in women but not men (pinteraction = 0.002). Conclusions: Cancer patients have concerns about participating in research during the COVID-19 pandemic that range from mild to serious. Furthermore, the relationship between general anxiety and concerns about research participation may be both more relevant and more pronounced in women than in men. Future work should examine the reasons why women are less likely to enrol in cancer trials during the COVID-19 pandemic.
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Adachi, Takuji, Yuki Tsunekawa, Akihito Matsuoka, and Daisuke Tanimura. "Association between Big Five Personality Traits and Participation in Cardiac Rehabilitation in Japanese Patients with Cardiovascular Disease: A Retrospective Cohort Study." International Journal of Environmental Research and Public Health 18, no. 16 (August 14, 2021): 8589. http://dx.doi.org/10.3390/ijerph18168589.

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Cardiac rehabilitation (CR) remains underutilised, despite its established clinical benefit. A personality traits assessment may help promote CR implementation, as they are determinants of health-related behaviour. This study aimed to examine the association between the Big Five personality traits and outpatient CR participation in patients with cardiovascular disease (CVD) after discharge. This retrospective cohort study included 163 patients aged <80 years, who underwent inpatient CR when hospitalised for CVD. The Big Five personality traits (conscientiousness, neuroticism, openness, extraversion, and agreeableness) of each patient were evaluated at discharge, using the Japanese version of the Ten-Item Personality Inventory. We examined the relationship of each personality trait with non-participation in outpatient CR and dropout within three months, using logistic regression analysis. Out of 61 patients who initiated the outpatient CR, 29 patients dropped out, leaving us with 32 subjects. The logistic regression analysis results showed that high conscientiousness was associated with non-participation in CR. The primary reason for this was a lack of motivation. Conversely, low conscientiousness and high openness were predictors of dropout. This study suggests that the assessment of the Big Five personality traits, especially conscientiousness and openness, can help improve health communication with patients to promote outpatient CR participation after discharge.
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Arriens, Cristina, Teresa Aberle, Fredonna Carthen, Stan Kamp, Aikaterini Thanou, Eliza Chakravarty, Judith A. James, Joan T. Merrill, and Motolani E. Ogunsanya. "Lupus patient decisions about clinical trial participation: a qualitative evaluation of perceptions, facilitators and barriers." Lupus Science & Medicine 7, no. 1 (March 2020): e000360. http://dx.doi.org/10.1136/lupus-2019-000360.

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ObjectiveAlthough SLE disproportionately affects minority racial groups, they are significantly under-represented in clinical trials in the USA. This may lead to misleading conclusions in race-based subgroup analyses. We conducted focus groups to evaluate the perceptions of diverse patients with lupus about clinical trial participation.MethodsA qualitative research design employed three 90 min focus groups led by a trained moderator and guided by the Theory of Planned Behaviour. Open-ended questions about trial participation included advantages and disadvantages (behavioural beliefs), approving and disapproving significant others (normative beliefs), and participation enhancers and barriers (control beliefs). Discussions were recorded, transcribed and analysed to identify emerging themes.ResultsPatients with SLE (n=23) aged 21–72, with increased proportion of minority groups (65%), participated. Reported advantages of trial participation included altruism and personal benefit. Disadvantages included uncertainties, disappointment, information burden, and life–health balance. Although some patients had discussed research participation with approving or disapproving family or friends, self-approval superseded external approval. Barriers included logistics and time, and facilitators included flexibility in scheduling, advance notice of studies, streamlined forms, and hope for SLE improvement.ConclusionsKnowledge about potential benefits of clinical trial participation was high. Minority patients demonstrated confidence in making their own informed decisions, but major barriers for all participants included burdensome forms, travel, childcare, and work. These suggest a major impact on minority and all recruitment from behavioural and control aspects, which should be considered in the logistics of trial design. This does not minimise the potential importance of improved access and education about clinical research.
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Vaxman, Iuliana, Alissa Visram, Shaji K. Kumar, Angela Dispenzieri, Francis K. Buadi, David Dingli, Martha Q. Lacy, et al. "Autologous Stem Cell Transplantation for Multiple Myeloma Patients Aged ≥ 75 Treated with Novel Agents." Blood 136, Supplement 1 (November 5, 2020): 12–13. http://dx.doi.org/10.1182/blood-2020-138625.

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Introduction Autologous stem cell transplantation (ASCT) has been used for treating multiple myeloma (MM) for over three decades and is generally reserved for patients younger than 65 years of age. The definition of transplant eligible is ill-defined and different centers have different policies to determine which patients are transplant eligible. Some centers have an age cut-off, others use clinical judgment, and some use various frailty scores (a scoring system based on comorbidities and physical and cognitive assessments) aiming to objectively assess transplant eligibility. There are limited data about outcomes in patients ≥ 75 years. Aim To report on outcomes of ASCT in a cohort of patients with MM aged 75 years or older. Methods Retrospective study of all consecutive MM patients aged ≥ 75 years that underwent ASCT at Mayo Clinic, Rochester, Minnesota. Stem cell transplantation at our center is routinely performed as an outpatient, with patients being hospitalized when deemed clinically necessary upon physician review. Results Between October 2005 and March 2020, 46 patients aged 75 years or older, received an ASCT at Mayo Clinic, Rochester. The median hematopoietic stem cell transplantation specific comorbidity index (HCT-CI) was 0 (range 0-6) with 8 patients having HCT-CI of 5 or 6. Median time from diagnosis to ASCT was 6.45 months (IQR 5.2-10.52) and 54% received reduced intensity conditioning with melphalan 140 mg/m2. All patients except one (that was treated with dexamethasone only) received induction with novel agents (listed in table 1) and 6 patients (13%) received doublet induction. All others received triplet induction. 46% of patients completed the ASCT without requiring hospitalization and 54% (n=25) of patients required hospitalization with a median duration of hospital admission of 9 days (IQR 5-13). Reasons for hospitalization included fever or infection (32%), cardiac arrhythmia (36%) and dehydration (32%). Overall response rate was 100% with a complete response seen in 57% of patients and 16 patients achieving MRD negative sCR. Median overall survival and progression free survival for the cohort were 82 months and 33 months, respectively. One patient died within 100 days of transplant representing a 2% 100-day mortality rate. Univariable cox regression model that evaluated the effect of gender, high risk cytogenetics, hemoglobin, renal function and melphalan dose did not detect any variable that was predictive of OS or PFS (Table 3). Conclusions ASCT is efficacious and can be safely delivered in the outpatient setting in carefully screened patients aged 75 or above. An arbitrary cutoff for age should not be used to exclude patients from ASCT, rather a careful assessment of "physiological age" including performance status and co-morbidities is required by an experienced treating team. Disclosures Kumar: Amgen: Consultancy, Other: Research funding for clinical trials to the institution, Consulting/Advisory Board participation with no personal payments, Research Funding; Cellectar: Other; Carsgen: Other, Research Funding; Dr. Reddy's Laboratories: Honoraria; Genentech/Roche: Other: Research funding for clinical trials to the institution, Consulting/Advisory Board participation with no personal payments; Sanofi: Research Funding; Kite Pharma: Consultancy, Research Funding; Novartis: Research Funding; Celgene/BMS: Other: Research funding for clinical trials to the institution, Consulting/Advisory Board participation with no personal payments; Merck: Consultancy, Research Funding; MedImmune: Research Funding; BMS: Consultancy, Research Funding; Tenebio: Other, Research Funding; Karyopharm: Consultancy; AbbVie: Other: Research funding for clinical trials to the institution, Consulting/Advisory Board participation with no personal payments; Janssen Oncology: Other: Research funding for clinical trials to the institution, Consulting/Advisory Board participation with no personal payments; Takeda: Other: Research funding for clinical trials to the institution, Consulting/Advisory Board participation with no personal payments; Genecentrix: Consultancy; Oncopeptides: Consultancy, Other: Independent Review Committee; IRC member; Adaptive Biotechnologies: Consultancy. Dispenzieri:Pfizer: Research Funding; Janssen: Research Funding; Alnylam: Research Funding; Intellia: Research Funding; Takeda: Research Funding; Celgene: Research Funding. Dingli:Bristol Myers Squibb: Research Funding; Rigel: Consultancy; Janssen: Consultancy; Alexion: Consultancy; Karyopharm Therapeutics: Research Funding; Apellis: Consultancy; Sanofi-Genzyme: Consultancy; Millenium: Consultancy. Kapoor:Cellectar: Consultancy; Takeda: Honoraria, Research Funding; Celgene: Honoraria; Amgen: Research Funding; Sanofi: Consultancy, Research Funding; Janssen: Research Funding; GlaxoSmithKline: Research Funding. Gertz:Prothena: Other: personal fee; Medscape: Other: personal fee, Speakers Bureau; Appellis: Other: personal fee; Alnylam: Other: personal fee; Ionis/Akcea: Other: personal fee; Janssen: Other: personal fee; Research to Practice: Other; Sanofi: Other; Teva: Speakers Bureau; Johnson and Johnson: Speakers Bureau; DAVA oncology: Speakers Bureau; Proclara: Other; Springer Publishing: Patents & Royalties; Celgene: Other; Physicians Education Resource: Other: personal fee; Aurora Bio: Other; Amgen: Other: personal fee; Annexon: Other: personal fee; Spectrum: Other: personal fee, Research Funding; Abbvie: Other.
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Jack, Robert A., Somnath Rao, Taylor D’Amore, Donald P. Willier, Robert Gallivan, Steven B. Cohen, Christopher C. Dodson, and Michael G. Ciccotti. "Long-Term Sports Participation and Satisfaction After UCL Reconstruction in Amateur Baseball Players." Orthopaedic Journal of Sports Medicine 9, no. 8 (August 1, 2021): 232596712110275. http://dx.doi.org/10.1177/23259671211027551.

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Background: While the incidence of ulnar collateral ligament reconstruction (UCLR) has increased across all levels of play, few studies have investigated the long-term outcomes in nonprofessional athletes. Purpose: To determine the rate of progression to higher levels of play, long-term patient-reported outcomes (PROs), and long-term patient satisfaction in nonprofessional baseball players after UCLR. Study Design: Case series; Level of evidence, 4. Methods: We evaluated UCLR patients who were nonprofessional baseball athletes aged <25 years at a minimum of 5 years postoperatively. Patients were assessed with the Kerlan-Jobe Orthopaedic Clinic Shoulder and Elbow Score (KJOC), the Timmerman-Andrews (T-A) Elbow score, the Mayo Elbow Performance Score (MEPS), and a custom return-to-play questionnaire. Results: A total of 91 baseball players met the inclusion criteria, and 67 (74%) patients were available to complete the follow-up surveys at a mean follow-up of 8.9 years (range, 5.5-13.9 years). At the time of the surgery, the mean age was 18.9 ± 1.9 years (range, 15-24 years). Return to play at any level was achieved in 57 (85%) players at a mean time of 12.6 months. Twenty-two (32.8%) of the initial cohort returned to play at the professional level. Also, 43 (79.1%) patients who initially returned to play after surgery reported not playing baseball at the final follow-up; of those patients, 12 reported their elbow as the main reason for eventual retirement. The overall KJOC, MEPS, and T-A scores were 82.8 ± 18.5 (range, 36-100), 96.7 ± 6.7 (range, 75-100), and 91.9 ± 11.4 (range, 50-100), respectively . There was an overall satisfaction score of 90.6 ± 21.5 out of 100, and 64 (95.5%) patients reported that they would undergo UCLR again. Conclusion: In nonprofessional baseball players after UCLR, there was a high rate of progression to higher levels of play. Long-term PRO scores and patient satisfaction were high. The large majority of patients who underwent UCLR would undergo surgery again at long-term follow-up, regardless of career advancement.
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Byrd, Courtney T., Katherine L. Winters, Megan Young, Danielle Werle, Robyn L. Croft, Elizabeth Hampton, Geoffrey Coalson, Andrew White, and Zoi Gkalitsiou. "The Communication Benefits of Participation in Camp Dream. Speak. Live.: An Extension and Replication." Seminars in Speech and Language 42, no. 02 (March 2021): 117–35. http://dx.doi.org/10.1055/s-0041-1723843.

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AbstractSchool-based guidelines often require that treatment focuses on minimizing or eliminating stuttered speech. The purpose of this study was to examine the benefits of explicit training in communication competencies to children who stutter without targeting stuttered speech. Thirty-seven children (ages 4–16) completed Camp Dream. Speak. Live., an intensive group treatment program which targets the psychosocial needs and communication of children who stutter. Outcome measures included the Overall Assessment of the Speaker's Experience of Stuttering (OASES), the Communication Attitude Test for Preschool and Kindergarten Children Who Stutter (KiddyCAT), and the Patient Reported Measurement Information System (PROMIS) Pediatric Peer Relationships Short Form (PROMIS Peer Relationships) and Parent Proxy Peer Relationships Short Form (PROMIS Parent Proxy). Pre- and posttreatment public presentations were rated on nine core verbal and nonverbal communication competencies by a neutral observer. Similar to previous studies, participants demonstrated significant improvements in communication attitudes (OASES) and perceived ability to establish peer relationships (PROMIS Peer Relationships), particularly school-aged participants (ages 7–16). Participants also demonstrated significant improvement in eight of the nine communication competencies. Findings suggest that, in addition to the psychosocial gains of programs such as Camp Dream. Speak. Live., children who stutter benefit from explicit training in communication skills, and these gains are not dependent on the presence of stuttered speech.
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Majumder, AAS. "Patterns of antihypertensive Drug Utilization among the Cardiologists of Bangladesh in Initiating Hypertension Treatment." Cardiovascular Journal 4, no. 2 (April 22, 2012): 114–19. http://dx.doi.org/10.3329/cardio.v4i2.10454.

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Background: Cardiologists play the major role in the management of hypertension in Bangladesh. Different classes of antihypertensive drugs are being used by the cardiologists in initiating hypertension treatment depending on the age and gender of the patient, severity of hypertension and associated diseases. However, there is no particular study to evaluate the patterns of the utilization of these antihypertensive drugs. Again, it is very important to use the right antihypertensive drug for the right patient to move further ahead in the management of hypertension. Hence, the current use of antihypertensive drugs in initiating hypertension treatment was analyzed. Methods: This was a nationwide survey with a participation of 196 cardiologists. Individual opinions from these cardiologists were collected through a questionnaire asking which antihypertensive they use most in initiating hypertension treatment. Collected data were analyzed by SPSS 17 software. Results: ACEI mono-therapy is the mostly used antihypertensive drug class for male patients aged < 55 years having mild to moderate hypertension. CCB mono-therapy is the mostly used antihypertensive drug class for female patients aged < 55 years having mild to moderate hypertension. CCB mono-therapy is also the mostly used antihypertensive drug class for both male and female patients aged e” 55 years having mild to moderate hypertension. For severe hypertensive patients aged < 55 years, the mostly used antihypertensive drugs are combinations of ACEI+CCB+D for both male and females. For severe hypertensive patients aged e” 55 years, the mostly used antihypertensive drugs are combinations of ACEI+CCB+D for males and combinations of CCB+BB for females. However, the overall pattern of using antihypertensive drugs did not significantly vary between male and female patients. Conclusion: The pattern of using antihypertensive drugs varies depending on age and gender of the patient and on the severity of hypertension. But, the overall pattern of using antihypertensive drugs did not significantly vary between male and female patients. DOI: http://dx.doi.org/10.3329/cardio.v4i2.10454 Cardiovasc. j. 2012; 4(2): 114-119
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Shelbourne, K. Donald, A. Nichole Sullivan, Katie Bohard, Tinker Gray, and Scott E. Urch. "Return to Basketball and Soccer After Anterior Cruciate Ligament Reconstruction in Competitive School-Aged Athletes." Sports Health: A Multidisciplinary Approach 1, no. 3 (May 2009): 236–41. http://dx.doi.org/10.1177/1941738109334275.

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Background: Little is known about the return to sports after anterior cruciate ligament reconstruction and whether sex differences exist regarding the level and timing at which athletes return. Hypotheses: Compared to school-aged girls, boys return to full sports earlier and at a higher frequency after surgery (1). Athletes who return to sports earlier will not have a higher incidence of subsequent injury to either knee after surgery (2). Study Design: Cohort. Methods: The patient population comprised 413 consecutive school-aged athletes who were injured while competing in basketball or soccer. Patients were enrolled prospectively, and activity levels were obtained through follow-up visits, surveys, phone calls, and e-mail. Results: Follow-up was obtained for 402 patients (basketball: 58 boys, 242 girls; soccer: 25 boys, 77 girls). Eighty-seven percent of girls and boys returned to high school basketball after surgery: the mean time to return to full participation in basketball was 5.2 ± 2.1 months for girls and 5.3 ± 2.2 months for boys ( P = .92). Similarly, 93% of girls and 80% of boys returned to compete in high school soccer after surgery ( P = .13); the mean time to return to full participation in soccer was 5.1 ± 1.9 months for girls and 5.1 ± 2.0 for boys ( P = 1.00). About 20% of athletes went on to compete in their sport in college. The time of return to sports was not a statistically significant factor for the incidence of subsequent anterior cruciate ligament injury. Conclusion: Of 402 athletes competing in basketball and soccer, women and men returned at the same rate and same level of sport after surgery. Athletes who returned to sports at earlier times after surgery did not have a higher incidence of subsequent anterior cruciate ligament injury than patients who returned at later times.
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Suna, Shinichiro, Shungo Hikoso, Takahisa Yamada, Masaaki Uematsu, Yoshio Yasumura, Akito Nakagawa, Toshihiro Takeda, et al. "Study protocol for the PURSUIT-HFpEF study: a Prospective, Multicenter, Observational Study of Patients with Heart Failure with Preserved Ejection Fraction." BMJ Open 10, no. 10 (October 2020): e038294. http://dx.doi.org/10.1136/bmjopen-2020-038294.

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IntroductionNeither the pathophysiology nor an effective treatment for heart failure with preserved ejection fraction (HFpEF) has been elucidated to date. The purpose of this ongoing study is to elucidate the pathophysiology and prognostic factors for patients with HFpEF admitted to participating institutes. We also aim to obtain insights into the development of new diagnostic and treatment methods by analysing patient background factors, clinical data and follow-up information.Methods and analysisThis study is a prospective, multicentre, observational study of patients aged ≥20 years admitted due to acute decompensated heart failure with preserved left ventricular ejection fraction (≥50%) and elevated N-terminal-pro brain natriuretic peptide (NT-proBNP) (≥400 pg/mL). The study began in June 2016, with the participation of Osaka University Hospital and 31 affiliated facilities. We will collect data on history in detail, accompanying diseases, quality of life, frailty score, medication history, and laboratory and echocardiographic data. We will follow-up each patient for 5 years, and collect outcome data on mortality, cause of death, and the number and cause of hospitalisation. The target number of registered cases is 1500 cases in 5 years.Ethics and disseminationThe protocol was approved by the Institutional Review Board (IRB) of Osaka University Hospital on 24 February 2016 (ID: 15471), and by the IRBs of the all participating facilities. The findings will be disseminated through peer-reviewed publications and conference presentations.
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Gerido, Lynette Hammond, Xiang Tang, Brittany Ernst, Aisha Langford, and Zhe He. "Patient Engagement in Medical Research Among Older Adults: Analysis of the Health Information National Trends Survey." Journal of Medical Internet Research 21, no. 10 (October 29, 2019): e15035. http://dx.doi.org/10.2196/15035.

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Background By 2035, it is expected that older adults (aged 65 years and older) will outnumber children and will represent 78 million people in the US population. As the aging population continues to grow, it is critical to reduce disparities in their representation in medical research. Objective This study aimed to describe sociodemographic characteristics and health and information behaviors as factors that influence US adults’ interest in engaging in medical research, beyond participation as study subjects. Methods Nationally representative cross-sectional data from the 2014 Health Information National Trends Survey (N=3677) were analyzed. Descriptive statistics and weighted multivariable logistic regression analyses were performed to assess predictors of one’s interest in patient engagement in medical research. The independent variables included age, general health, income, race and ethnicity, education level, insurance status, marital status, and health information behaviors. Results We examined the association between the independent variables and patient interest in engaging in medical research (PTEngage_Interested). Patient interest in engaging in medical research has a statistically significant association with age (adjusted P<.01). Younger adults (aged 18-34 years), lower middle-aged adults (aged 35-49 years), and higher middle-aged adults (aged 50-64 years) indicated interest at relatively the same frequency (29.08%, 29.56%, and 25.12%, respectively), but older adults (aged ≥65 years) expressed less interest (17.10%) than the other age groups. After the multivariate model was run, older adults (odds ratio 0.738, 95% CI 0.500-1.088) were found to be significantly less likely to be interested in engaging in medical research than adults aged 50 to 64 years. Regardless of age, the strongest correlation was found between interest in engaging in medical research and actively looking for health information (P<.001). Respondents who did not seek health information were significantly less likely than those who did seek health information to be interested in engaging in medical research. Conclusions Patients’ interest in engaging in medical research vary by age and information-seeking behaviors. As the aging population continues to grow, it is critical to reduce disparities in their representation in medical research. Interest in participatory research methods may reflect an opportunity for consumer health informatics technologies to improve the representation of older adults in future medical research.
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Kolt, Gali S., Barbara R. Ferdman, Jessica Y. Choi, Janine Henson, Van-Trang Nguyen, Emily A. Farkas, Vinicius JDS Nina, et al. "Emotional quality-of-life and patient-reported limitation in sports participation in children with uncorrected congenital and acquired heart disease in healthcare-restricted settings in low- and middle-income countries." Cardiology in the Young 30, no. 2 (February 2020): 188–96. http://dx.doi.org/10.1017/s1047951120000220.

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AbstractBackground:Little is known about emotional quality-of-life in paediatric heart disease in low- and middle-income countries where the prevalence of uncorrected lesions is high. Research on emotional quality-of-life and its predictors in these settings is key to planning interventions.Methods:Ten-year retrospective cross-sectional study of children aged 6–17 years with uncorrected congenital or acquired heart disease in 12 low- and middle-income countries was conducted. Emotional functioning score of the PedsQL TM 4.0 generic core scale and data on patient-reported limitation in sports participation were collected via in-person interview and analysed using regression analyses.Results:Ninety-four children reported mean emotional functioning scores of 71.94 (SD 25.32) [95% CI 66.75–77.13] with lower scores independently associated with having a parent with a chronic illness or who had died (p = 0.005), having less than three siblings (p = 0.007), and reporting a subjective limitation in carrying an item equivalent to a 4 lb load (p = 0.021). Patient-reported limitation in sports participation at least “sometimes” was present in 69% and was independently associated with experiencing symptoms at least once a month (p < 0.001).Conclusion:Some of the factors which were associated with better emotional quality-of-life were similar to those identified in previous studies in patients with corrected defects. Patient-reported limitation in sports participation is common. In addition to corrective surgery and exercise, numerous other interventions which are practicable during surgical missions might improve emotional quality-of-life.
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Filippova, O. M., A. M. Bessmertny, M. N. Kuzin, and S. Yu Petrov. "Prospects of using the TVGD-02 tonometer for assisted monitoring of intraocular pressure at home." Russian Ophthalmological Journal 14, no. 2 (June 20, 2021): 27–35. http://dx.doi.org/10.21516/2072-0076-2021-14-2-27-35.

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Purpose: to evaluate the safety and convenience of self-using the intraocular pressure tonometer TVGD-02 at home with no participation of medical professionals. Material and methods. 42 people formed 30 pairs: a patient and an assistant. In 9 pairs, each person played both roles. The participants practiced the technique of transpalpebral measurement of intraocular pressure (IOP) at home, and, as assistants, measured IOP of their partner patients. All subjects were asked to fill in a questionnaire to evaluate the convenience and safety of the tonometer use by a 5-point system. Results. The assistant users, aged 22 to 83 (ave. 59.68 ± 17.20 years) had diverse educational levels. Of the patient users, aged 22 to 82 (ave. 60.64 ± 17.10 years), 82.14 % had ocular pathology, while 35.7 % had glaucoma with concomitant pathology. In 100 % of cases, the participants required no professional assistance to properly prepare the tonometer for operation and perform IOP measurement. The accuracy and reproducibility of measurement results significantly increased with the assistants’ gaining skills of operating the tonometer. On the 1st day, the data obtained in a series of measurements scattered for the control block within 2.07 ± 1.70 [7; 0] mm Hg, while the measured IOP of the patient scattered within 2.89 ± 19.10 [8; 0]. In contrast, on the 5th day, measurement accuracy increased significantly and the scatter dropped to 1.21 ± 0.72 [2; 0] and 0.85 ± 0.69 [2; 0] mm Hg, respectively. The users rated the ease of using the device at different staged from 4.21 ± 0.67 to 5.0 ± 0.0 points. Conclusion. Assisted transpalpebral tonometry with the TVGD-02 tonometer ensures an adequate assessment of IOP in patients at home. The principles of device operation and the technique can be learned and skills can be gained without the participation of medical personnel.
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Liu, Bolin, Shujuan Liu, Yuan Wang, Binfang Zhao, Tianzhi Zhao, Lanfu Zhao, Wenhai Lv, et al. "Neurosurgical enhanced recovery after surgery (ERAS) programme for elective craniotomies: are patients satisfied with their experiences? A quantitative and qualitative analysis." BMJ Open 9, no. 11 (November 2019): e028706. http://dx.doi.org/10.1136/bmjopen-2018-028706.

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ObjectiveTo evaluate patient satisfaction and associated predictors at discharge, as well as patient experience at 30-day follow-up, in a neurosurgical enhanced recovery after surgery (ERAS) programme.DesignA single-centre, prospective, randomised controlled study.SettingA tertiary hospital in China.ParticipantsA total of 140 neurosurgical patients aged 18–65 years old who had a single intracranial lesion and were admitted for elective craniotomy between October 2016 and July 2017 were included.InterventionsPatients were randomised into two groups: 70 patients received care according to a novel neurosurgical ERAS protocol (ERAS group) and 70 patients received conventional perioperative care (control group).Outcome measuresPatient satisfaction at discharge was evaluated using a multimodal questionnaire. A secondary analysis of patient experience regarding participation in the ERAS programme was conducted using a semistructured qualitative interview via telephone at 30-day follow-up.ResultsThe mean patient satisfaction was significantly higher in the ERAS group than in the control group at discharge (92.2±4.3 vs 86.8±7.4, p=0.0001). The most important predictors of patient satisfaction included age (OR=6.934), postoperative nausea and vomiting (PONV) Visual Analogue Scale (VAS) score (OR=0.184), absorbable skin suture (OR=0.007) and postoperative length of stay (LOS) (OR=0.765). Analysis on patient experience revealed five themes: information transfer, professional support, shared responsibility and active participation, readiness for discharge, and follow-up, all of which are closely related and represent positive and negative aspects.ConclusionsMeasures that include decreasing PONV VAS score, incorporating absorbable skin suture and shortening LOS seem to increase patient satisfaction in a neurosurgical ERAS programme. Analysis of data on patient experience highlights several aspects to achieve patient-centred and high-quality care. Further studies are warranted to standardise the assessment of patient satisfaction and experience in planning, employing and appraising the ERAS programme.Trial registration numberChiCTR-INR-16009662.
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Mora, Allan David, David Lunz, and Mark Kao. "Return To Sports And Physical Activities After Open Reduction And Internal Fixation For Lisfranc Injuries In Recreational Athletes." Foot & Ankle Orthopaedics 3, no. 3 (July 1, 2018): 2473011418S0036. http://dx.doi.org/10.1177/2473011418s00361.

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Category: Trauma Introduction/Purpose: To assess participation in sport and physical activity following open reduction and internal fixation of a Lisfranc injury in a cohort of recreational athletes. Methods: Our study identified all adult patients aged 55 or less, who presented to our institution with a Lisfranc injury and underwent open reduction and internal fixation (ORIF) using a Lisfranc screw combined with bridge plating technique. Sports and physical activity participation was assessed with a new sports-specific, patient-administered questionnaire. Clinical outcomes were assessed with the Foot and Ankle Outcome Score (FAOS). Results: Thirty-three patients qualified for the study (21 males/12 females). Mean age and follow-up: 31.2 (range, 18-55) years and 2.9 (range, 1.5-5.4) years, respectively. Post operatively, 31 patients (94%) were able to return to some form of sport. Twenty-two patients (66%) returned to playing sport at or above their pre injury level. Of the 11 patients who played less sport, 6 had ongoing pain, and the remaining 5 were asymptomatic but were participating less frequently due to other lifestyle reasons. In addition, of the 33 patients, 11 (33%) had some degree of ongoing pain that might limit their ability to return to sports and physical activities. There was strong correlation between overall FAOS and the Sports Questionnaire. Conclusion: The majority of patients sustaining a Lisfranc injury can return to sport and physical activity after ORIF. Patients should be counseled preoperatively that about one in three might experience continued pain at the injury site
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Mora, Allan David, Mark Kao, Terrence Alfred, Gregory Shein, Jeff Ling, and David Lunz. "Return to Sports and Physical Activities After Open Reduction and Internal Fixation of Lisfranc Injuries in Recreational Athletes." Foot & Ankle International 39, no. 7 (April 2, 2018): 801–7. http://dx.doi.org/10.1177/1071100718765176.

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Background: The purpose of this study was to assess participation in sport and physical activity following open reduction and internal fixation of a Lisfranc injury in a cohort of recreational athletes. Methods: This study identified all adult patients aged 55 years or younger who presented with a Lisfranc injury and underwent open reduction and internal fixation (ORIF) using a Lisfranc screw combined with bridge plating technique. Sports and physical activity participation was assessed with a new sports-specific, patient-administered questionnaire. Clinical outcomes were assessed with the Foot and Ankle Outcome Score (FAOS). Thirty-three patients qualified for the study (21 men/12 women). Mean age and follow-up were 31.2 (range, 18-55) years and 2.9 (range, 1.5-5.4) years, respectively. Results: Postoperatively, 31 patients (94%) were able to return to some form of sport. Twenty-two patients (66%) returned to playing sport at or above their preinjury level. Of the 11 patients who played less sport, 6 had ongoing pain, and the remaining 5 were asymptomatic but were participating less frequently because of other lifestyle reasons. In addition, of the 33 patients, 11 (33%) had some degree of ongoing pain that might limit their ability to return to sports and physical activities. There was strong correlation between overall FAOS and the Sports Questionnaire. Conclusion: Most patients who sustained a Lisfranc injury could return to sport and physical activity after ORIF. Patients should be counseled preoperatively that about 1 in 3 might experience continued pain at the injury site Level of Evidence: Level IV, retrospective case series.
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Lannon, R., and ST O'Keeffe. "Cardiopulmonary resuscitation in older people – a review." Reviews in Clinical Gerontology 20, no. 1 (January 27, 2010): 20–29. http://dx.doi.org/10.1017/s0959259809990438.

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SummarySurvival to discharge after in-hospital cardiopulmonary resuscitation (CPR) is about 20% in those aged 65–69 years, declining with advancing age to about 10% in those aged 90 years or more. There are conflicting reports on whether or not advanced age, independent of the severity of acute and chronic illness, is a determinant of outcome. Recognition that the outcome of CPR in hospital patients is often poor has prompted extensive debate regarding the appropriate use of this procedure. In particular, there has been concern about unnecessary CPR in extended-care and hospice settings. Conversely, there has also been evidence that doctors and families may be prone to underestimate the quality of life and likelihood of benefit from CPR in older people and to make resuscitation decisions without considering the preferences of older people themselves. Recent guidelines have attempted to strike a balance between ensuring patient participation whenever possible but without offering illusory choices where CPR is very unlikely to succeed.
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Werneck, Antonio Luiz dos Santos, Luiz Carlos do Amaral Gurgel, Laurinda Moura de Mello, and Gabriella Queiroz de Albuquerque. "Sudden sensorineural hearing loss: a case report supporting the immunologic theory." Arquivos de Neuro-Psiquiatria 61, no. 4 (December 2003): 1018–22. http://dx.doi.org/10.1590/s0004-282x2003000600025.

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Sudden sensorineural hearing loss (SSNHL) is one of the autoimmune diseases of the inner ear (AIED), which is characterized by a hearing loss of above 30 decibels in at least three contiguous audiometric frequencies over a time course of 72 hours or shorter. Its cause can be found in only 10% to 15% of patients. Histopathologic findings have reported retrograde neuronal degeneration and atrophy of Corti's organ and of the vascular stria. This paper describes a case of a middle-aged female patient undergoing a treatment for hyperthyroidism who developed bilateral SSNHL. The patient was treated with methylprednilisone (1mg/kg/day) for three days with considerable hearing improvement. This treatment was followed by lung and kidney tuberculosis. The immune mechanism of this entity and the possibility of interconnected participation of the antigen type, of an autoimmune disease and of bacterial infection are discussed.
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Annear, Michael, Peter Lucas, Tim Wilkinson, and Yasuo Shimizu. "Prescribing physical activity as a preventive measure for middle-aged Australians with dementia risk factors." Australian Journal of Primary Health 25, no. 2 (2019): 108. http://dx.doi.org/10.1071/py18171.

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Dementia is increasing in Australia in line with population ageing and is expected to peak by mid-century. The development of common forms of dementia, including Alzheimer’s disease, is associated with lifestyle-related risk factors that are prevalent among middle-aged Australians, including obesity, hypertension, high cholesterol, diabetes and depression. These risk factors can be significantly ameliorated through regular participation in moderate aerobic physical activity (PA). Current national and international guidelines recommend at least 150 min of aerobic PA per week for achieving health protective effects. Lifestyle intervention is a critical area for action as there are currently no medical or pharmaceutical interventions that can halt the progression of common dementias. Physician–patient discussions concerning risk reduction via habitual aerobic PA offers a complementary intervention as part of broader dementia management. Evidence suggests that to achieve the highest rates of adherence to PA, physician advice in primary care should be supported by wider policies, institutions and community services that offer a meaningful referral pathway and patient follow up after initial assessment. International Green Prescription programs provide examples of physician-led interventions in primary care that could inform further action in Australia.
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G, Iverson, Terry D, Caccese J, Büttner F, and Merz Z. "A-128 Age of First Exposure to Football is not Associated with Midlife Brain Health Problems." Archives of Clinical Neuropsychology 35, no. 6 (August 28, 2020): 921. http://dx.doi.org/10.1093/arclin/acaa068.128.

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Abstract Objective This study examined if earlier age of first exposure (AFE) to football is associated with worse brain health in middle-aged men who played high school football. Method Using an online crowdsourcing platform, we recruited 123 men ages 35–55 who played high school football. Participants completed self-report measures that assessed (i) demographic information; (ii) medical history, sport participation, and concussion history; (iii) current depression symptomatology (i.e., Patient Health Questionnaire-8; PHQ-8); and (iv) current concussion-like symptoms (i.e., the British Columbia Post-Concussion Symptom Inventory; BC-PSI). Approximately half (n = 62; 50.4%) reported football participation starting before the age of 12 (AFE12 years). The two groups were compared using chi-squared and Mann–Whitney U-Tests. Results Former high school football players who began playing football before age 12 did not differ in the rates at which they had been prescribed medications for psychological problems or in the rates at which they had recently experienced symptoms of anxiety, depression, memory loss, chronic pain, or headaches compared with former high school football players who began playing football at or after age 12. Additionally, there were no group differences in lifetime history of treatment by a mental health professional (χ2 = 0.20, p = .66) or regarding the PHQ-8 (U = 1,839.0, p = .791) or BC-PSI total scores (U = 1828.5, p = .751). Conclusion These findings suggest that earlier AFE to football is not associated with worse brain health in middle-aged men in this sample who played high school football.
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Wright, Caroline E., Stephen Yeung, Helen Knowles, Antoinette Woodhouse, Emma Barron, and Sian Evans. "Factors influencing variation in participation in the National Diabetes Audit and the impact on the Quality and Outcomes Framework indicators of diabetes care management." BMJ Open Diabetes Research & Care 6, no. 1 (October 2018): e000554. http://dx.doi.org/10.1136/bmjdrc-2018-000554.

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ObjectiveParticipation in the National Diabetes Audit (NDA) has become a contractual requirement for all general practices in England and is used as part of the assessment framework for sustainability and transformation partnership (STP) footprints. The study aimed to investigate general practice-related factors which may influence participation in the NDA, and the impact that participation in the NDA may have on diabetes management and patient care.Research designA cross-sectional analysis of routine primary care data from 45 725 646 patients aged 17+ years registered across 7779 general practices in England was performed using logistic regression. The main outcome measures included general practice voluntary participation in the NDA, general practice-related factors (practice size, deprivation, diabetes prevalence, geographic area, practice population age) and diabetes management outcomes (cholesterol, blood pressure, hemoglobin A1c (HbA1c)).ResultsParticipation in the NDA differed significantly according to practice size (t(7653)=−9.93, p=0.001), level of deprivation (χ2(9)=36.17, p<0.0001), diabetes prevalence (p<0.0001), practice population age (p<0.0001), and geographic area (χ2(26)=676.9, p<0.0001). In addition, the Quality and Outcomes Framework diabetes indicator HbA1c (OR 1.01, CI 1.0 to 1.01, p=0.0001) but not cholesterol (p=0.055) or blood pressure (p=0.76) was independently associated with NDA participation when controlling for practice-related factors.ConclusionVariation in NDA participation exists. It is suggested that some practices may need additional support when submitting data to the NDA and that NDA participation may have an impact on diabetes outcomes. However, the use of NDA outcomes as a measure of progress with diabetes care by STPs is still unclear and further investigation is needed.
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Sciacca, Anna, Carly Meyer, Katie Ekberg, Caitlin Barr, and Louise Hickson. "Exploring Audiologists' Language and Hearing Aid Uptake in Initial Rehabilitation Appointments." American Journal of Audiology 26, no. 2 (June 13, 2017): 110–18. http://dx.doi.org/10.1044/2017_aja-16-0061.

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Purpose The study aimed (a) to profile audiologists' language during the diagnosis and management planning phase of hearing assessment appointments and (b) to explore associations between audiologists' language and patients' decisions to obtain hearing aids. Method Sixty-two audiologist–patient dyads participated. Patient participants were aged 55 years or older. Hearing assessment appointments were audiovisually recorded and transcribed for analysis. Audiologists' language was profiled using two measures: general language complexity and use of jargon. A binomial, multivariate logistic regression analysis was conducted to investigate the associations between these language measures and hearing aid uptake. Results The logistic regression model revealed that the Flesch–Kincaid reading grade level of audiologists' language was significantly associated with hearing aid uptake. Patients were less likely to obtain hearing aids when audiologists' language was at a higher reading grade level. No associations were found between audiologists' use of jargon and hearing aid uptake. Conclusions Audiologists' use of complex language may present a barrier for patients to understand hearing rehabilitation recommendations. Reduced understanding may limit patient participation in the decision-making process and result in patients being less willing to trial hearing aids. Clear, concise language is recommended to facilitate shared decision making.
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Dren, Natalie M., and Lorna E. Warwick. "A Cross-Sectional Study Examining the Relationship between Patient Information Level and Patient Participation in Healthcare Decisions and Health Management." Blood 136, Supplement 1 (November 5, 2020): 7–8. http://dx.doi.org/10.1182/blood-2020-135837.

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Introduction In 2018, Lymphoma Coalition (LC) analysed data from the 2018 LC Global Patient Survey (GPS) on Lymphomas and CLL and determined that 'adequately informed' patients reported more positive healthcare experiences. From the 2018 survey, it was evident that many patients with lymphoma/CLL left their initial diagnosis meeting with a poor understanding of many aspects of their treatment and care plan. This can translate negatively across many areas of the patient experience. LC used the 2020 GPS to further assess correlations relating to information provision and the patient experience. This study examines the relationship between the level of information patients with lymphoma/CLL received at diagnosis, and their level of participation in healthcare decisions and health management. Methodology This study is a sub-analysis of the 2020 LC GPS, which was available in 19 languages and was hosted online from 13 January 2020 until 13 March 2020. Globally, there were 11,878 respondents made up of 9,179 patients and 2,699 caregivers. This study includes patient data only. Patients who felt they received the right amount of information at diagnosis (n=5159) were compared against patients who did not receive enough information (n=3285). Demographics of the two patient groups were examined, and questions relating to patient involvement in healthcare decision-making, disease management, and overall experience were analysed. Differences in proportions were tested using chi-square tests (p=0.05) and odds ratios with 95% CI. Statistical analyses were performed with IBM SPSS v21. Results The two patient groups (right amount of information 'RA', not enough information 'NE') were similar in their distribution of age and area of residence. The majority of patients in both groups were aged 50 years or older (71% RA; 60% NE) and lived in city/urban areas (47% RA; 55% NE). There were slightly more females than males in the NE group (61% female, 39% male) compared to the RA group (55% female, 45% male). Additionally, the majority of patients in the RA group lived in Europe (56%) while the majority of patients in the NE group lived in Asia-Pacific (44%). Patients were asked if they are involved as much as they want to be in decisions about their care and treatment; the majority of patients in both groups said 'yes' (94% RA; 79% NE). However, only 4% of RA patients reported 'no, but I would like to be more involved', compared to 19% of NE patients. Patients were asked to indicate how much they agree or disagree with statements relating to their role in making decisions about their healthcare (see Table 1). Compared to RA patients, NE patients were at least twice as likely to disagree that they seek clarification when they do not understand (OR=2.88), that they are confident in communicating concerns to the doctor (OR=5.17), that they have good conversations with the doctor about their care and treatment plan (OR=8.29), and that they are confident in their ability to positively impact their health (OR=2.12). A greater proportion of RA patients reported agreeing with all of these statements. Further, compared to RA patients, NE patients were twice (OR=2.45) as likely to agree to feeling overwhelmed by managing their health and condition (Table 1). Patients were asked questions relating to disease management and overall patient experience (Table 2). Compared to RA patients, NE patients were more likely to disagree that they are confident in their ability to find reliable information (OR=1.69), or in their ability to get the information they need from their doctor (OR=9.58). NE patients were also more likely to disagree that they are confident in their ability to keep their symptoms/side effects from interfering with the things they want to do (OR=1.86). A greater proportion of RA patients reported agreeing with all of these statements. Conclusion Compared to patients who felt they received the right amount of information at diagnosis, those who did not receive enough information were more likely to report disagreeing with all positive statements relating to involvement in healthcare decision-making, disease management, and overall experience. It was evident that patients who had knowledge surrounding their condition and care plan were more inclined to be confident in taking an active role in managing their health and condition. Access to credible timely information is therefore an important aspect to a successful patient experience. Disclosures Dren: Pfizer Inc: Research Funding; AbbVie Corporation: Research Funding; Takeda Oncology: Research Funding. Warwick:Pfizer Inc: Research Funding; AbbVie Corporation: Research Funding; Takeda Oncology: Research Funding.
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Afitasari, Adella Indri, and Beti Kristinawat. "GAMBARAN MOTIVASI DAN PARTISIPASI KELUARGA DALAM PERAWATAN MANDIRI PASIEN GAGAL JANTUNG." Jurnal Ilmu Keperawatan Medikal Bedah 3, no. 2 (November 30, 2020): 32. http://dx.doi.org/10.32584/jikmb.v3i2.587.

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The inability of the heart to pump blood adequately accompanied by dyspnea causes people with heart failure to have physical limitations. These symptoms result in the patient being unable to perform self-care optimally, so they need help from others, especially family. This study aims to identify the description of motivation and family participation in the self-care of heart failure patients. The research design used was descriptive quantitative research with 152 respondents who were drawn by purposive sampling technique. The results showed 62.5% women, and aged between 40-59 years. Forms of family motivation are family care about the patient's illness, family acceptance of the patient's condition, and family assistance to a health service center. Family participation was divided into three, with the highest score being self-care management who contacted the doctor or nurse, and advised the family to take medication when symptoms appeared. Participate in self-care with an assessment of readiness to work, and follow given medication instructions. Then the maintenance of self-care, namely leaving the family to exercise control with a doctor or nurse, and treatment of patients so they don't drink, forget to drink using a medicine box.
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Subbiah, Ishwaria Mohan, Aman Buzdar, Ecaterina Elena Ileana Dumbrava, Siqing Fu, Filip Janku, Daniel D. Karp, Aung Naing, et al. "Investigating the disparate enrollment of older adults on phase I clinical trials: Evolving participation patterns of patients 65 years and older w advanced cancer on phase I trials." Journal of Clinical Oncology 38, no. 15_suppl (May 20, 2020): 12044. http://dx.doi.org/10.1200/jco.2020.38.15_suppl.12044.

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12044 Background: While safety and dose-finding remain the primary objective of Phase 1 trials, the potential for clinical benefit has taken a greater meaning in the last decade with the novel therapies. With data from phase I trials being submitted for regulatory approval, the finer details of these studies are under even more scrutiny: in particular, do the trial participants reflect the general patient population for whom the drug may be indicated? To that end, we investigated age-based enrollment on phase I clinical trials over time. Methods: We queried a prospectively maintained database at a major phase I trials center to identify eligible patients and demographic + clinical variables including phase I trial characteristics, age at date of enrollment into 3 age-based cohorts: AYA ages 15-39y, mid-age 40-64y, older adults aged 65y+. We calculated descriptive statistics, and explored correlations (Pearson/Spearman) and associations (linear regression) between age and independent variables. Results: Over a 3-year period (1/1/17 to 12/31/19), we identified 6267 pts enrolled on 338 phase I trials. Median overall age 58.4y (range 15.5-95.1y). 729 (12%, median age 34.8y) were AYA, 3652 (58%, median age 55.4y) mid-age and 1886 (30%, median 70y) older adults, of whom 870 pts were aged 70-79y and 76 pts aged 80y+ (18 being >85y). There was no association b/w senior participation and year of enrollment (2017 31%, 2018 29%, 2019 30%, b/w age and type of therapy (i.e. targeted vs immunotherapy, etc.) or b/w age and # of drugs given on trial (single agent vs combo) (all p > 0.05). Conclusions: Older adults remain underrepresented on phase I trials esp. when compared to incidence of cancer in that age group (30% enrollment vs 60% incidence), a discordance more staggering in the oldest old pts (85y+; only 18 pts enrolled over 3 yrs when compared to 140,690 pts 85y+ w a new cancer dx in just 2019). Once enrolled, older adults received similar types of phase I therapies with comparable number of drugs as compared to middle age patients, i.e. older adults were just as likely to get immunotherapy or targeted therapy as well mono- vs combo therapy as mid-age pts. [Table: see text]
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Tate, Angela, Gregory N. Turner, Sarah E. Knab, Colbie Jorgensen, Andrew Strittmatter, and Lori A. Michener. "Risk Factors Associated With Shoulder Pain and Disability Across the Lifespan of Competitive Swimmers." Journal of Athletic Training 47, no. 2 (March 1, 2012): 149–58. http://dx.doi.org/10.4085/1062-6050-47.2.149.

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Context: The prevalence of shoulder pain among competitive swimmers is high, but no guidelines exist to reduce shoulder injuries. Elucidating differences between swimmers with and without shoulder pain can serve as a basis for the development of a program to prevent shoulder injury that might lead to pain and dysfunction. Objective: To determine whether physical characteristics, exposure, or training variables differ between swimmers with and without shoulder pain or disability. Design: Cross-sectional study. Setting: Multisite swimming centers. Patients or Other Participants: A total of 236 competitive female swimmers aged 8 to 77 years. Data Collection and Analysis: Participants completed the Penn Shoulder Score and underwent testing of core endurance, range of motion, muscle force production, and pectoralis minor muscle length and the Scapular Dyskinesis Test. Swimmers were grouped by age for analysis: ages 8 to 11 years (n = 42), 12 to 14 years (n = 43), 15 to 19 years (high school, n = 84), and 23 to 77 years (masters, n = 67). Comparisons were made between groups with and without pain and disability using independent t tests for continuous data and χ2 analyses and Fisher exact tests for categorical data. Results: Nine (21.4%) swimmers aged 8 to 11 years, 8 (18.6%) swimmers aged 12 to 14 years, 19 (22.6%) high school swimmers, and 13 (19.4%) masters swimmers had shoulder pain and disability. Differences that were found in 2 or more age groups between athletes with and without shoulder pain and disability included greater swimming exposure, a higher incidence of previous traumatic injury and patient-rated shoulder instability, and reduced participation in another sport in the symptomatic groups (P &lt; .05). Reduced shoulder flexion motion, weakness of the middle trapezius and internal rotation, shorter pectoralis minor and latissimus, participation in water polo, and decreased core endurance were found in symptomatic females in single varying age groups (P &lt; .05). Conclusions: Female competitive swimmers have shoulder pain and disability throughout their lives. Given that exposure and physical examination findings varied between athletes with and without substantial pain and disability, a program to prevent shoulder injury that might lead to pain and dysfunction appears warranted and might include exposure reduction, cross-training, pectoral and posterior shoulder stretching, strengthening, and core endurance training.
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Percac-Lima, Sanja, Jeffrey M. Ashburner, Nancy Rigotti, Elyse R. Park, Yuchiao Chang, and Steven J. Atlas. "Lung cancer screening patient navigation for current smokers in community health centers: A randomized controlled trial." Journal of Clinical Oncology 35, no. 15_suppl (May 20, 2017): 1506. http://dx.doi.org/10.1200/jco.2017.35.15_suppl.1506.

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1506 Background: Annual chest computed tomography (CT) can decrease lung cancer mortality in high risk individuals. Patient navigation (PN) has been shown to improve cancer screening rates in underserved populations. We evaluated the impact of PN on lung cancer screening (LCS) in current smokers in community health centers (CHC). Methods: Current smokers aged 55-77 receiving care in five CHC affiliated with an academic medical center were randomized to intervention (n = 400) or control (n = 800) groups. In the intervention arm, patient navigators (PNs) determined eligibility for LCS, provided brief smoking cessation counseling, introduced shared decision making about LCS, scheduled appointments with the primary care provider (PCP), reminded patients about appointments and PCPs to order CTs, and helped patients attend testing and follow-up any abnormal results. Control patients received usual care. The primary outcome was the proportion of patients in each group who had any chest CT during the study period. Secondary outcomes included proportion of patients receiving lung screening CTs and the number of lung cancers diagnosed in each group. Results: Baseline patient characteristics were similar between randomized groups. From March 2016-January 2017, PNs contacted 332 (83%) of intervention patients; 76 refused further participation. Of participating patients, 130 (51%) were eligible for LCS. Exclusions included insufficient smoking history (n = 117), competing comorbidities (n = 5), moved (n = 2), and died (n = 2). In intention-to-treat analyses, 124 intervention patients (31%) had chest CT vs. 138 control patients (17.3%, p < 0.01). Lung cancer screening CTs were performed in 94 intervention patients (23.5%) vs. 69 control patients (8.6%, p < 0.01). Eight lung cancers were diagnosed in intervention patients (2%) vs. 4 in controls (0.5%). Conclusions: A patient navigation program implemented in community health centers significantly increased lung cancer screening among current smokers. PNs may help underserved low-income current smokers complete LCS and improve equity in care while decreasing lung cancer mortality. Clinical trial information: 2015P002239.
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Puravath, F. M., T. Ash, R. Rottapel, C. Spadola, S. Bandana, M. Schonberg, S. Redline, and S. Bertisch. "0624 Voice of the Patient: A Patient-Centered Exploration of Factors Influencing Obstructive Sleep Apnea Care." Sleep 43, Supplement_1 (April 2020): A238—A239. http://dx.doi.org/10.1093/sleep/zsaa056.621.

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Abstract Introduction Despite widely available efficacious treatments for obstructive sleep apnea (OSA), patients commonly report frustration in accessing and adhering to treatments. Sparse research has explored factors influencing OSA care from the patient perspective, which may limit provision of patient-centered care: care responsive to patient preferences, needs, and values. To this end, we conducted qualitative research to identify factors, voiced by patients, that influence OSA treatment initiation and adherence. Methods We performed semi-structured interviews with 15 patients previously diagnosed with OSA from Boston, MA and a national patient portal (MyApnea.Org). Patients were asked about barriers and facilitators to their diagnosis and treatment as well as about their preferences and values that informed their treatment decisions. Interviews were audio-recorded and transcribed. A qualitative content analysis was performed to identify themes. After developing a codebook, interviews were coded. Codes were then audited and finalized by study team consensus. Results Our sample was aged 25-74 years; 71% identified as female. Among participants, 57.1% identified as White, 14.3% Black, 14.3% Asian, and 14.3% Other. Major themes were broadly classified as (1) facilitators (provision of useful information on treatment options, participation in shared decision-making, continued clinician support); (2) barriers (inconvenience of treatment, difficulty of habit formation, treatment side effects, competing comorbid conditions); (3) motivators (value of improving chronic health, family support, positive treatment effects); (4) contextual factors (insufficient knowledge/awareness of OSA, navigating healthcare systems, access to informational resources). Awareness of OSA symptoms and treatments, and ongoing support were cited as the most common factors influencing the patient experience. Conclusion This formative research highlights that diverse factors impact the OSA evaluation and treatment patient experience. Further research should test interventions that promote effective patient-centered care for OSA, such as shared decision-making tools. Support Brigham and Women’s Hospital Research Institute Patient-Centered Comparative Effectiveness Research Center Grant
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Rozenbilds, U., R. D. Goldney, P. N. Gilchrist, E. Martin, and H. Connelly. "Assessment by Relatives of Elderly Patients with Psychiatric Illness." Psychological Reports 58, no. 3 (June 1986): 795–801. http://dx.doi.org/10.2466/pr0.1986.58.3.795.

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Participation of relatives to provide clinical information on psychiatric patients is frequently under-utilized resulting in valuable data being bypassed. In an attempt to formalise the gathering of data from relatives we used the Geriatric Evaluation by Relatives Rating Instrument (GERRI), a 49-statement questionnaire in which the relative rates the patient's behaviour in terms of frequency of occurrence, The information obtained from relatives was then compared with that obtained from other forms of patient-assessment—the London Psychogeriatric Rating Scale completed by nursing staff, the Minimental State Screening Test and the Visual Analogue Scale for Depression completed by the patient, and the Activities of Daily Living Instrument completed by the occupational therapist. These instruments were chosen as being valid and reliable procedures with which to compare the GERRI. Subjects were 100 patients aged 65 yr. and over who were admitted consecutively to a psychogeriatric unit in a large psychiatric hospital. Significant correlations between relatives' assessment of cognitive and social function and those completed by the patients and other staff were noted. The relatives' assessment of the patients' mood, however, did not correlate with the patients' self-assessment of mood, suggesting that depression in the elderly may be “masked.”
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Hong, Young-Rock, Kalyani Sonawane, Samantha Larson, Arch G. Mainous, and Nicole M. Marlow. "Impact of Provider Participation in ACO Programs on Preventive Care Services, Patient Experiences, and Health Care Expenditures in US Adults Aged 18–64." Medical Care 56, no. 8 (August 2018): 711–18. http://dx.doi.org/10.1097/mlr.0000000000000935.

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Jones, Jacqueline, Mary Stanbury, Sandra Haynes, Karina V. Bunting, Trudie Lobban, A. John Camm, Melanie J. Calvert, and Dipak Kotecha. "Importance and Assessment of Quality of Life in Symptomatic Permanent Atrial Fibrillation: Patient Focus Groups from the RATE-AF Trial." Cardiology 145, no. 10 (2020): 666–75. http://dx.doi.org/10.1159/000511048.

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Aims: To establish the extent and impact of symptoms in patients with atrial fibrillation (AF), the importance of different aspects of quality of life (QoL), and how we should assess wellbeing. Methods: Focus groups of patients with symptomatic permanent AF in a trial of heart rate control; the RATE-AF trial randomised 160 patients aged ≥60 years with permanent AF and at least NYHA class II dyspnoea to either digoxin or beta-blockers. Patient and public representatives led the focus groups and performed all data acquisition and analysis, using thematic approaches to interpret patient views about QoL and its measurement. Results: Substantial impairment of health-related QoL was noted in 160 trial patients, with impact on all domains apart from mental health. Eight women and 11 men aged 61–87 years participated in the focus groups. Common themes were a lack of information from healthcare professionals about AF, a lack of focus on QoL in consultations, and a sense of frustration, isolation, and reduced confidence. There was marked variability in symptoms in individual patients, with some describing severe impact on activities of daily living, and profound interaction with comorbidities such as arthritis. Day-to-day variation in QoL and difficulty in attributing symptom burden to AF or other comorbidities led to challenges in questionnaire completion. Consensus was reached that collecting both general and AF-specific QoL would be useful in routine practice, along with participation in peer support, which was empowering for the patients. Conclusions: The impact of comorbidities is poorly appreciated in the context of AF, with considerable variability in QoL that requires both generic and AF-specific assessment. Improvement in QoL should direct the appraisal, and reappraisal, of treatment decisions for patients with permanent AF.
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Lee, Guek Eng, Mandy Y. L. Ow, Desiree Lie, and Rebecca Alexandra Dent. "Barriers and facilitators for clinical trial participation among diverse Asian patients with breast cancer." Journal of Clinical Oncology 32, no. 26_suppl (September 10, 2014): 108. http://dx.doi.org/10.1200/jco.2014.32.26_suppl.108.

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108 Background: Recruitment rates for breast cancer trials are low for racial/ethnic minorities. Little is known about factors influencing trial recruitment in Asian patients. Our aim is to examine the barriers and facilitators for participation in trials among multi-ethnic Asian women with breast cancer. Methods: We recruited a convenience sample from consecutive women seen at a National Cancer Centre. Two experienced bilingual (English and Chinese) moderators conducted focus groups to theme saturation. The question guide incorporated open-ended questions soliciting opinions about trial participation and knowledge. Women were first asked if they were willing, unwilling, or still open to participate in future trials. Sessions were audiotaped and transcribed. Transcripts were independently coded for emergent themes. Results: Sixteen of 103 women approached participated in five focus groups. Chinese, Malay and Indian participants aged 29 to 69 represented different cancer stages. Five had no prior knowledge of trials. We identified three major areas consisting of 24 minor themes for barriers and facilitators. Major themes fell into: 1) individual- or patient-related, 2) trial-related and and 3) sociocultural factors. When analysis was stratified by willingness to join trials, we found that women willing to join trials expressed themes representing facilitators (better test therapy, cost-effective profile, or trust in doctors and local systems). Women unwilling to participate expressed themes associated with barriers, while women still open to participation expressed themes representing both facilitators and barriers. Malay women were more likely to express themes related to ‘fatalism’ as a barrier. Conclusions: We found that facilitators and barriers to trial participation among Asian women were similar to those previously reported in Western women. Knowledge of trials is limited among women receiving breast cancer treatment. Unique sociocultural factors suggest that approaches customised to local and community beliefs are needed to improve trial participation in minority groups.
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Lund, Adam, Nadia Lund, Ron Scott, Quinn Yu, Stephen Chui, and Sheila Turris. "Mass Gatherings and Youth Peer Volunteerism." Prehospital and Disaster Medicine 34, s1 (May 2019): s148. http://dx.doi.org/10.1017/s1049023x19003303.

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Introduction:Music and sporting events are mass gatherings with unique risks related to participation. “All-ages” events, which include participants below the age of majority (18 in many jurisdictions), have been observed to have an over-representation of patient presentations in the youth category. Peer helpers may lower the barrier to seeking on-site care. Youth (peer-aged) volunteerism provides opportunities for exposure to new environments, skills, and mentorship. Medical volunteerism may promote personal satisfaction through prosocial behavior (i.e., helping others), community engagement and immersion into a potential health professions career path.Methods:We conducted an observational pilot feasibility study with feedback forms and semi-structured interviews. The pilot program paired youth with parents/guardians/responsible adults as health care volunteers at special events.Results:Youth/adult dyads volunteered for a variety of events in Canada during the 2018 event season. All participants in the “Juniors Program” completed at least a Standard First Aid course, including orientation to personal safety and confidentiality. Each pair worked in one of two areas: first aid or Festival Health (the harm reduction space at music events) providing peer-to-peer and “all-ages” support. Post-event feedback from the dyads revealed many positive experiences and universally called for more opportunities.Discussion:A strong volunteer base is an asset to any community. In this pilot study, the volunteer experiences were supervised by a team of credentialed health care professionals. The authors report on qualitative feedback in themes based on patient perspective, volunteer perspective, team perspective, and event management perspective. More research is needed to measure the outcomes of the Junior’s Program. More Investigation is needed to determine not only the long-term benefits of participation on event medical teams, but also to identify factors that shape a positive experience for youth, their parents, and the event participants that they support.
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Subbiah, Ishwaria Mohan, Chad Tang, Arvind Rao, Vivek Subbiah, Razelle Kurzrock, and David S. Hong. "Call to integrate supportive care and patient reported outcomes in early phase clinical trials: An exploration of adolescent and young adult (AYA) participation on phase I trials of novel anticancer agents." Journal of Clinical Oncology 35, no. 31_suppl (November 1, 2017): 149. http://dx.doi.org/10.1200/jco.2017.35.31_suppl.149.

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149 Background: Adolescent and young adults (AYA) aged 15-39 years with cancer represent a patient population with very unique needs extending into the psychosocial realm. Consequently AYA participation on cancer clinical trials has been dismally low in recent decades, particularly on early phase trials with investigational agents. In an effort to better understand AYAs with advanced cancer, we analyzed their characteristics and participation on phase I clinical trials. Methods: We queried a department database to identify 1489 consecutive pts treated on phase I trials bw Dec 2004-July 2013 and then divided into 2 age-based groups (AYA 15-39y, mid age 40-64y) for analysis of their baseline characteristics, participation, time to treatment failure (TTF), and imaging response. We then calculated the odds ratios of achieving a favorable clinical benefit (defined as a RECIST response of prolonged SD≥6m+PR+CR) for AYAs vs mid-age pts. Results: AYAs represented 15% (n = 220) of participants treated on phase I trials while 67% (n = 991) were middle age. Most AYAs were women (63% female, 33% male) w median age being 32.6 years and a median of 3 prior therapies. AYAs most commonly had GYN (n = 41, 19%), sarcoma (n = 39, 18%), GI (n = 35, 16%), thoracic/head/neck (n = 31, 14%), melanoma (n = 27, 12%), and breast (n = 20, 9%) cancers. AYA had a comparable median TTF of 3.3m to mid age pts (3.5m). Overall, 369 (37%) mid age and 96 (44%) AYAs received a non-FDA approved agent. Imaging responses among AYAs showed 93 (42%) SD including 42 (19%) prolonged SD (median duration 9.7m), 34 (15%) PR (median duration 9.5m), and 2 AYAs with a CR lasting 36.2m and 50.1m. Conclusions: AYA patients represented just 15% of phase I clinical trials participants; none of these trials measured patient reported outcomes or quality of life indices, highlighting an urgent need for comprehensive supportive care integration into AYA care to tend to the unique psychosocial, economic, and family needs of this population to ultimately identify and overcome barriers to clinical trial participation.
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Lopez-Vargas, Pamela, Allison Tong, Sally Crowe, Stephen I. Alexander, Patrina Ha Yuen Caldwell, Dianne E. Campbell, Jennifer Couper, et al. "Research priorities for childhood chronic conditions: a workshop report." Archives of Disease in Childhood 104, no. 3 (October 2, 2018): 237–45. http://dx.doi.org/10.1136/archdischild-2018-315628.

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BackgroundChronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy.ObjectiveTo identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices.SettingAn Australian paediatric hospital and health consumer organisations.MethodsRecruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed.ResultsSeventy-eight research questions were identified. Five themes underpinned participants’ priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary services).ConclusionResearch priorities identified by children, caregivers and health professionals emphasise a focus on life participation, psychosocial well-being, impact on family and quality of care. These priorities may be used by funding and policy organisations in establishing a paediatric research agenda.
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Fragoso, Yára Dadalti, Alessandro Finkelsztejn, Maria Cristina B. Giacomo, Liliana Russo, and Wesley Soares Cruz. "The effect of multiple sclerosis on the professional life of a group of Brazilian patients." Arquivos de Neuro-Psiquiatria 68, no. 6 (December 2010): 914–17. http://dx.doi.org/10.1590/s0004-282x2010000600016.

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OBJECTIVE: To assess the impact of multiple sclerosis (MS) on the professional life of Brazilian patients. METHOD: One hundred MS patients were randomly selected from the database of the Brazilian Multiple Sclerosis Association (ABEM). An individual interview was carried out by telephone by a member of ABEM, who collected data on the patients' clinical status, educational level and professional lives. RESULTS: Complete data were obtained from 96 patients (27 males and 69 females) aged 55.0±14.1 years, with average disease duration of 4.6±4.0 years). Eighty percent had eleven or more years of schooling. Among the whole group, 66% did not present limitations on walking. The longer the disease duration and the older the patient were, the higher the chances were that the patient was retired or receiving workers' compensation benefits. However, even among patients with MS for less than five years, the rate of non-participation in the workforce was 47.7%. Fatigue, paresthesia, cognitive dysfunction and pain were often cited as the motives for not working. CONCLUSION: MS patients presented high levels of unemployment, retirement and receipt of workers' compensation benefits, despite their high schooling levels. Age, disease duration and disability influenced these results for the whole group. However, even among younger patients with shorter disease duration and low disability, this finding remained.
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48

Hough, Rachael, Sabrina Sandhu, Maria Khan, Anthony Moran, Richard Feltbower, Charles Stiller, Mike C. G. Stevens, Clare Rowntree, Ajay Vora, and Martin G. McCabe. "Are survival and mortality rates associated with recruitment to clinical trials in teenage and young adult patients with acute lymphoblastic leukaemia? A retrospective observational analysis in England." BMJ Open 7, no. 10 (October 2017): e017052. http://dx.doi.org/10.1136/bmjopen-2017-017052.

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ObjectiveParticipation rates in clinical trials are low in teenagers and young adults (TYA) with cancer. Whilst the importance of clinical trials in informing best practice is well established, data regarding individual patient benefit are scarce. We have investigated the association between overall survival and trial recruitment in TYA patients with acute lymphoblastic leukaemia (ALL).DesignRetrospective.SettingNational (England) TYA patients treated for ALL.Participants511 patients aged 15–24 years diagnosed with ALL between 2004 and 2010 inclusive, of whom 239 (46.7%) participated in the UKALL2003 trial.Outcome measuresPatients were identified using National Clinical Trial (UKALL2003) and Cancer Registry (National Cancer Data Repository, English National Cancer Online Registration Environment) Databases. Relative survival rates were calculated for trial and non-trial patients and observed differences were modelled using a multiple regression approach. The numbers and percentages of deaths in those patients included in the survival analysis were determined for each 3-month period, p values were calculated using the two-tailed z-test for difference between proportions and 95% CIs for percentage deaths were derived using the binomial distribution based on the Wilson Score method.ResultsPatients treated on the trial had a 17.9% better 2-year survival (85.4% vs 67.5%, p<0.001) and 8.9% better 1-year survival (90.8% vs 81.9%, p=0.004) than those not on the trial. 35 (14.6%) patients recruited to the trial died in the 2 years following diagnosis compared with 86 (32.6%) of those not recruited (p<0.001).ConclusionsTYA patients recruited to the clinical trial UKALL 2003 in England had a lower risk of mortality and a higher overall survival than contemporaneous non-trial patients. These data underline the potential for individual patient benefit in participating in a clinical trial and the importance of international efforts to increase trial participation in the TYA age group.Trial registration numberISRCTN07355119.
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Rivkin, S. E., M. Markman, J. Petersen, and R. Montgomery. "Influence of tumor type, disease status, and patient age on self-reported interest regarding participation in cancer clinical trials." Journal of Clinical Oncology 24, no. 18_suppl (June 20, 2006): 6100. http://dx.doi.org/10.1200/jco.2006.24.18_suppl.6100.

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6100 Background: There is limited data available regarding the reasons cancer patients decide to enter clinical trials. Methods: To explore this issue, aggregate responses to the question, “Are you interested in learning about clinical trials for your condition?” obtained from > 115,000 cancer patients (or their families) who entered data into one of several proprietary decision-support programs embedded within approximately 100 cancer-related Internet sites, were analyzed. Results: The proportion of patients (or their families) who expressed interest in learning of the availability of clinical trials ranged from as low as 21% (endometrial and cervix cancer patients > 80 years old; n=178) to as high as 85% (recurrent ovarian cancer patients, aged 51–60; n=842). Patients > 80 years old, regardless of sex, tumor type, or disease status, were substantially less likely to desire such information. Patients with self-declared more “serious conditions” (e.g., metastatic breast cancer [71%; n=5,444], recurrent prostate cancer [70%; n=4,121]), and those with cancers widely known to have a poor prognosis (e.g., non-small cell lung cancer [75%; n=23,298]), were more likely to request data on trials, than those with an overall more “favorable” prognosis (e.g., newly diagnosed prostate cancer [46%; n=21,348]). There were no observed differences in interest between men and women with similar conditions. Conclusion: In this large data base, major differences in self-expressed interest regarding availability of clinical trails were observed. Particularly notable were the reduced interest among the very elderly, and the increased interest by patients with the most serious cancer-related conditions. [Table: see text]
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Watabayashi, Kate, Jordan Steelquist, Karen A. Overstreet, Anthony Leahy, Erin Bradshaw, Kathleen D. Gallagher, Alan J. Balch, et al. "A Pilot Study of a Comprehensive Financial Navigation Program in Patients With Cancer and Caregivers." Journal of the National Comprehensive Cancer Network 18, no. 10 (October 2020): 1366–73. http://dx.doi.org/10.6004/jnccn.2020.7581.

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Background: Few studies have engaged patients and caregivers in interventions to alleviate financial hardship. We collaborated with Consumer Education and Training Services (CENTS), Patient Advocate Foundation (PAF), and Family Reach (FR) to assess the feasibility of enrolling patient–caregiver dyads in a program that provides financial counseling, insurance navigation, and assistance with medical and cost of living expenses. Methods: Patients with solid tumors aged ≥18 years and their primary caregiver received a financial education video, monthly contact with a CENTS counselor and PAF case manager for 6 months, and referral to FR for help with unpaid cost of living bills (eg, transportation or housing). Patient financial hardship and caregiver burden were measured using the Comprehensive Score for Financial Toxicity–Patient-Reported Outcomes (COST-PRO) and Caregiver Strain Index (CSI) measures, respectively, at baseline and follow-up. Results: Thirty patients (median age, 59.5 years; 40% commercially insured) and 18 caregivers (67% spouses) consented (78% dyad participation rate). Many participants faced cancer-related financial hardships prior to enrollment, such as work change or loss (45% of patients; 39% of caregivers) and debt (64% of patients); 39% of caregivers reported high levels of financial burden at enrollment. Subjects received $11,000 in assistance (mean, $772 per household); 66% of subjects with income ≤$50,000 received cost-of-living assistance. COST-PRO and CSI scores did not change significantly. Conclusions: Patient–caregiver dyads were willing to participate in a financial navigation program that addresses various financial issues, particularly cost of living expenses in lower income participants. Future work should address financial concerns at diagnosis and determine whether doing so improves patient and caregiver outcomes.
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