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Journal articles on the topic 'Parents, quality of life, inflammatory bowel disease'

Author: Grafiati

Published: 24 April 2022

Last updated: 30 July 2025

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1

Cilar, Leona, Špela Polak, and Barbara Kegl. "Parental knowledge of chronic inflammatory bowel diseases in a child." Sestrinski glasnik 26, no. 1 (2021): 30–34. http://dx.doi.org/10.11608/sgnj.26.1.5.

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Introduction: Chronic inflammatory bowel disease is a chronic lifelong disease with various triggers, intermediate longer and shorter remissions. Parents need to know what kind of nutrition the child with chronic inflammatory bowel disease needs because they must be able to make the right decisions regarding the child‘s diet. The right choice of diet gives a child enough energy in their daily and enables the quality life. They must enjoy a healthy balanced diet so that they receive all the nutrients the body needs. In our work, we presented chronic inflammatory bowel disease in children and pa

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De Carlo, Chiara, and Matteo Bramuzzo. "Distress, catastrofismo e qualità di vita dei bambini affetti da malattia infiammatoria cronica intestinale." Medico e Bambino 39, no. 10 (2020): 634–37. http://dx.doi.org/10.53126/meb39634.

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Inflammatory bowel diseases can lead to the development of distress and catastrophic constructs in children and their parents and have an important impact on the patients’ quality of life. This pilot study showed that about half of children and parents report a significant state of distress that is related to a worse quality of life in children. About one fifth of patients also have catastrophising thoughts about their pain despite the remission of the disease, thus also this psychological construct has a strong correlation with the worsening of their quality of life. Psychological management

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Akobeng, Anthony K., Victor Miller, David Firth, Mirajkar V. Suresh-Babu, Pervaiz Mir, and Adrian G. Thomas. "Quality of Life of Parents and Siblings of Children with Inflammatory Bowel Disease." Journal of Pediatric Gastroenterology & Nutrition 28, Supplement (1999): S40—S42. http://dx.doi.org/10.1097/00005176-199904001-00007.

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Cushman, Grace, Sharon Shih, and Bonney Reed. "Parent and Family Functioning in Pediatric Inflammatory Bowel Disease." Children 7, no. 10 (2020): 188. http://dx.doi.org/10.3390/children7100188.

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Although the impact of pediatric inflammatory bowel disease (IBD) extends beyond the patient to their parents and families, the focus of previous literature has largely been on investigating the patient’s medical and psychosocial functioning, with less consideration of the family system. Having a comprehensive understanding of parent and family functioning within the context of pediatric IBD is important given the role parents and family members have in the successful management of the disease and caring of the child. The current review paper aggregates the empirical research regarding parent

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Arakelyan, Anna L., Andrej N. Surkov, Evgenij E. Bessonov, et al. "The Possibilities of Assessing the Quality of Life in Inflammatory Bowel Diseases." Pediatric pharmacology 22, no. 3 (2025): 323–32. https://doi.org/10.15690/pf.v22i3.2905.

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Inflammatory bowel diseases (IBD) in children are chronic immune-mediated conditions that significantly affect the quality of life (QOL). QOL assessment tools designed specifically for children allow us to quantify the degree of the disease’s impact on various aspects of their lives, such as daily activity, emotional state, social interactions, etc. The research results demonstrate that IBD has a negative impact on children’s QOL, leading to lower school performance, limited social activity, and psychological problems such as anxiety and depression. The severity of the disease, the frequency o

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Gallo, Julieta, Amy Grant, Anthony R. Otley, et al. "Do Parents and Children Agree? Quality-of-Life Assessment of Children With Inflammatory Bowel Disease and Their Parents." Journal of Pediatric Gastroenterology and Nutrition 58, no. 4 (2014): 481–85. http://dx.doi.org/10.1097/mpg.0000000000000236.

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Zmeskalova, D., J. Prasko, M. Ociskova, et al. "Parental styles and quality of life in the families with adolescents suffering from inflammatory bowel diseases." European Psychiatry 41, S1 (2017): S317. http://dx.doi.org/10.1016/j.eurpsy.2017.02.232.

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BackgroundInflammatory bowel diseases (IBD) in adolescents are chronic medical conditions with a substantial influence on the well-being of the family members.MethodsTotal of 27 adolescents suffered from IBD, and 39 healthy adolescents completed questionnaires ADOR (parenting styles assessed by teenagers), KidScreen-10 (quality of life), SAD (Scale of Anxiety in Children), and CDI (Children's Depression Inventory). Their parents completed the Beck Anxiety Inventory (BAI), Beck Depression Inventory (BDI-II), and Pediatrics Quality of Life Family Impact Module (PedsQL).ResultsThe parental styles

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Greenley, R. N., and C. Cunningham. "Parent Quality of Life in the Context of Pediatric Inflammatory Bowel Disease." Journal of Pediatric Psychology 34, no. 2 (2008): 129–36. http://dx.doi.org/10.1093/jpepsy/jsn056.

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Kohut, S. Ahola, T. Walters, P. Church, K. Frost, A. Jelen, and J. Stinson. "Parent rumination predicts quality of life in adolescents with inflammatory bowel disease." Journal of Pain 19, no. 3 (2018): S31. http://dx.doi.org/10.1016/j.jpain.2017.12.078.

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Tahirova, А. R., I. V. Sichinava, O. F. Savvateeva, and E. V. Borisova. "Quality of Life of Children with Crohn’s Disease as a Potential Criterion for Monitoring Disease Activity." Doctor.Ru 19, no. 10 (2020): 27–32. http://dx.doi.org/10.31550/1727-2378-2020-19-10-27-32.

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Study Objective: To analyse the activity dynamics of Crohn’s disease (CD) and the quality of life (QoL) of children aged 8–17 years. Study Design: Open prospective non-randomized comparative study. Materials and Methods. The quality of life was assessed in 37 healthy children and 28 children with Crohn's disease (17 boys and 11 girls). Disease activity (Paediatric Crohn’s Disease Activity Index, PCDAI) was determined using PedsQL 4.0 Generic Core Scales questionnaire which comprises assessment of health and activity, child’s attitude, problems with interpersonal relations, and progress at scho

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Nomura, Satomi, Yuri Hirano, Ichiro Takeuchi, Hirotaka Shimizu, and Katsuhiro Arai. "Anxiety, Depression, and Quality of Life in Parents of Adolescents with Inflammatory Bowel Disease: A Longitudinal Study." Pediatric Gastroenterology, Hepatology & Nutrition 26, no. 5 (2023): 239. http://dx.doi.org/10.5223/pghn.2023.26.5.239.

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Phuoc, Nguyen Trong, Le Thi Huong, and Nguyen Thi Viet Ha. "Health-related quality of life and associated factors in children with crohn’s disease at Vietnam National Children’s Hospital." Tạp chí Nghiên cứu Y học 173, no. 12E13 (2023): 194–206. http://dx.doi.org/10.52852/tcncyh.v173i12e13.1699.

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Health-related quality of life (HRQoL) is increasingly recognized as one of the goals of holistic healthcare. Crohn's disease is the most common inflammatory bowel disease that necessitates long-term management and increases the risk of psychological distress and social disruption, leading to impaired HRQoL in comparison to healthy controls. We administered the PedsQLTM 4.0 scale to 40 children aged 2 to 17 years with Crohn’s disease and their parents to evaluate the HRQoL of patients and define the variables that impact these individuals. Our study indicated that children with Crohn's disease

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Cserép, Melinda, Brigitta Szabó, Péter Tóth-Heyn, Attila J. Szabo, and Irena Szumska. "The Predictive Role of Cognitive Emotion Regulation of Adolescents with Chronic Disease and Their Parents in Adolescents’ Quality of Life: A Pilot Study." International Journal of Environmental Research and Public Health 19, no. 23 (2022): 16077. http://dx.doi.org/10.3390/ijerph192316077.

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Background: The purpose of this study was to investigate cognitive emotion regulation in adolescents with chronic illness and their parents. Methods: Eighty-five young people (mean = 15.86 years, standard deviation = ± 1.42, girls 65.88%) with chronic illnesses (inflammatory bowel disease n = 40 or type 1 diabetes n = 45), and their parents (mean = 46.06 years, 87.06% mother) completed the Cognitive Emotion Regulation Questionnaire (CERQ) for themselves and the Inventory of Quality of Life in Children and Adolescents (ILC) questionnaire adolescent and parent version. We conducted two hierarchi

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Mardare, R., L. Eskell, J. Machta, J. M. E. Fell, and D. Thangarajah. "P222 Chronic pain is common in Paediatric Inflammatory Bowel Disease and impacts quality of life." Journal of Crohn's and Colitis 17, Supplement_1 (2023): i375—i376. http://dx.doi.org/10.1093/ecco-jcc/jjac190.0352.

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Abstract Background Prevalence of chronic pain (CP) is reported as 38% in adult inflammatory bowel disease (IBD), with a significant impact on quality of life, functional and social outcomes 1,2,3. Prevalence and attributes of chronic pain are unknown in paediatric IBD. Aim evaluate the prevalence, disease related factors, and impact on quality of life (QOL) of CP. Methods Prospective, cross-sectional single centre study included 41 children, (8 -18 years), of a predominantly CD cohort 29/41, (70%). Patients and their parents completed validated age-appropriate pain questionnaires4 and IMPACT

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Mueller, Rebekka, Farah Ziade, Valérie Pittet, et al. "Quality of Life in Swiss Paediatric Inflammatory Bowel Disease Patients: Do Patients and Their Parents Experience Disease in the Same Way?" Journal of Crohn's and Colitis 10, no. 3 (2015): 269–76. http://dx.doi.org/10.1093/ecco-jcc/jjv199.

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Thapwong, P., C. Norton, H. Terry, and W. Czuber-Dochan. "N07 A qualitative study of the impact of inflammatory bowel disease on partners." Journal of Crohn's and Colitis 15, Supplement_1 (2021): S611—S612. http://dx.doi.org/10.1093/ecco-jcc/jjab074.821.

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Abstract Background Inflammatory Bowel Disease (IBD) not only impacts the quality of life of the patient, but also affects their family members. Studies to date have provided an understanding of impact of IBD and IBD implications for people with IBD. However, little is known about the impact of IBD on their family members. Therefore, the current study aimed to explore the lived experience of people with IBD and their family members regarding the impacts of IBD on family members and their coping methods. Methods Twelve participants, including six people with IBD with their six partners, were pu

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Dovrolis, Nikolas, Anastasia Moschoviti, Smaragdi Fessatou, George Karamanolis, George Kolios, and Maria Gazouli. "Identifying Microbiome Dynamics in Pediatric IBD: More than a Family Matter." Biomedicines 11, no. 7 (2023): 1979. http://dx.doi.org/10.3390/biomedicines11071979.

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Background: Pediatric inflammatory bowel disease (IBD) is a chronic inflammatory intestinal disease that affects both children and adolescents. Symptoms can significantly affect a child’s growth, development, and quality of life, making early diagnosis and effective management crucial. This study focuses on treatment-naïve pediatric IBD patients and their immediate families to identify the role of the microbiome in disease onset. Methods: Nine families with pediatric IBD were recruited, comprising seven drug-naïve Crohn’s disease (CD) patients and two drug-naïve ulcerative colitis (UC) patient

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Herzer, Michele, Lee A. Denson, Robert N. Baldassano, and Kevin A. Hommel. "Patient and Parent Psychosocial Factors Associated With Health-related Quality of Life in Pediatric Inflammatory Bowel Disease." Journal of Pediatric Gastroenterology and Nutrition 52, no. 3 (2011): 295–99. http://dx.doi.org/10.1097/mpg.0b013e3181f5714e.

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Forgel, S., G. Norman, R. M. Issenman, N. Gold, and E. J. Irvine. "Health-related quality of life in pediatric inflammatory bowel disease: A comparison of parent and child reports." Gastroenterology 114 (April 1998): A977. http://dx.doi.org/10.1016/s0016-5085(98)83979-6.

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Bravo, A., S. G. Christensen, M. Julsgaard, et al. "P1177 Perceptions of patients with Inflammatory Bowel Disease and first degree relatives on prediction and prevention of disease." Journal of Crohn's and Colitis 18, Supplement_1 (2024): i2100. http://dx.doi.org/10.1093/ecco-jcc/jjad212.1307.

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Abstract Background Significant advances have been made in understanding the preclinical stages of IBD, and in identifying risk factors and biomarkers to predict IBD onset. With the use of predictive testing to identify patients at risk of developing the disease, it would be possible to intervene and try to mitigate that risk. However, the feasibility of such strategy, would depend on whether individuals at risk of developing IBD would be willing to undergo predictive testing and preventive interventions. Methods A Redcap® electronic survey, available in five languages, was disseminated by cli

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Coskun, Ufuk, Kim Kelly, Theresa Hunter, Louise Newton, Tara Symonds, and Laure Delbecque. "P034 A QUALITATIVE STUDY EXPLORING THE BURDEN OF CROHN’S DISEASE AMONG CHILDREN AND ADOLESCENTS." Inflammatory Bowel Diseases 26, Supplement_1 (2020): S59. http://dx.doi.org/10.1093/ibd/zaa010.151.

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Abstract Background Crohn’s disease (CD) is a type of inflammatory bowel disease that can occur at any age, though is most common between ages 15–35 years. CD symptoms can have a significant impact on health-related quality of life (HRQL). Although key symptoms and impacts of CD in adults are well-known, exploration of these in children and the level of agreement between child reported symptoms and impacts and those observed by parents/caregiver have not been well documented. Objectives Understand patients’ experiences of CD, including CD symptoms and the burden of living with CD, from the per

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Scheffers, L., L. E. van den Berg, M. W. Pijnenburg, et al. "P515 A 12-week tailored physical training program including dietary advice in children with Inflammatory Bowel Disease: a randomized crossover trial." Journal of Crohn's and Colitis 15, Supplement_1 (2021): S493—S494. http://dx.doi.org/10.1093/ecco-jcc/jjab076.637.

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Abstract Background Inflammatory Bowel Disease (IBD) is a chronic inflammatory disease of the gastrointestinal tract. Recently, physical activity has been suggested to improve the quality of life and course of disease in adult IBD patients. The aim of this study was to investigate physical functioning in paediatric IBD patients and to determine the effects of a tailored 12-week lifestyle intervention including a physical training program. Methods Figure 1 shows our study design and measurements. The tailored 12-week lifestyle intervention consisted of 3 strenuous physical training sessions a w

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Loreaux, Katherine L., Wendy N. Gray, Lee A. Denson, and Kevin A. Hommel. "Health-Related Quality of Life in Adolescents With Inflammatory Bowel Disease: The Relation of Parent and Adolescent Depressive Symptoms." Children's Health Care 44, no. 2 (2014): 119–35. http://dx.doi.org/10.1080/02739615.2014.912943.

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Teitelbaum, Jonathan E., Rajsekar R. Rajaraman, Joseph Jaeger, Sindhu Para, and Tina Rakitt. "Correlation of Health-Related Quality of Life in Children With Inflammatory Bowel Disease, Their Parents, and Physician as Measured by a Visual Analog Scale." Journal of Pediatric Gastroenterology and Nutrition 57, no. 5 (2013): 594–97. http://dx.doi.org/10.1097/mpg.0b013e31829cf923.

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Mukhtar, M. S. H., W. J. Lim, P. Tozer, and A. Hart. "P317 Patient satisfaction in a joint fistula clinic at a tertiary Inflammatory Bowel Disease centre in the United Kingdom." Journal of Crohn's and Colitis 17, Supplement_1 (2023): i457—i458. http://dx.doi.org/10.1093/ecco-jcc/jjac190.0447.

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Abstract Background Patients with fistulising perianal Crohn’s disease experience significant impairments in their sexual and social relationships, work, and overall life quality. The presence of perianal disease can result in patients avoiding sex, ending intimate relationships, and feeling inadequate or guilty towards their partners. Some participants also report partners’ refusal to engage in sex(1). Access to joint fistula clinics, where patients can simultaneously meet gastroenterologists and surgeons, may yield better care. However, sharing intimate details about the sexual-, social-, an

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Aardoom, Martine A., Polychronis Kemos, Irma Tindemans, et al. "International prospective observational study investigating the disease course and heterogeneity of paediatric-onset inflammatory bowel disease: the protocol of the PIBD-SETQuality inception cohort study." BMJ Open 10, no. 7 (2020): e035538. http://dx.doi.org/10.1136/bmjopen-2019-035538.

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IntroductionPatients with paediatric-onset inflammatory bowel disease (PIBD) may develop a complicated disease course, including growth failure, bowel resection at young age and treatment-related adverse events, all of which can have significant and lasting effects on the patient’s development and quality of life. Unfortunately, we are still not able to fully explain the heterogeneity between patients and their disease course and predict which patients will respond to certain therapies or are most at risk of developing a more complicated disease course. To investigate this, large prospective s

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Vanhelst, Jérémy, Laurent Beghin, Stéphanie Coopman, et al. "Physical fitness in children and adolescents with inflammatory bowel disease: protocol for a case–control study." BMJ Open 12, no. 10 (2022): e063403. http://dx.doi.org/10.1136/bmjopen-2022-063403.

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IntroductionInflammatory bowel disease (IBD) is a chronic disorder of the gastrointestinal tract, associated with adverse health consequences that may adversely influence physical activity and body composition in youth. These effects may lead to changes in physical fitness, which is positively associated with health-related outcomes. The aim is to assess health-related physical fitness levels in paediatric patients with IBD and to compare these levels with those in healthy matched controls.Methods and analysisThis trial is a bicentric case–control study. Fifty paediatric patients with IBD and

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Peña-Sánchez, J., D. Jennings, M. Andkhoie, et al. "A4 A FRAMEWORK TO STUDY INFLAMMATORY BOWEL DISEASE AMONG INDIGENOUS PEOPLES AND PRELIMINARY RESULTS FROM SASKATCHEWAN, CANADA." Journal of the Canadian Association of Gastroenterology 3, Supplement_1 (2020): 5–6. http://dx.doi.org/10.1093/jcag/gwz047.003.

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Abstract Background Inflammatory Bowel Disease (IBD) is a chronic condition with significant life-threatening disease-related complications and reductions in quality of life if left untreated. Despite available research about IBD in the general population, there is limited-to-no evidence about IBD among Indigenous peoples in Canada and around the world. Aims We aimed to define a collaborative framework, estimate the prevalence and incidence rates of IBD among First Nations in Saskatchewan, Canada, and explore perceptions of IBD among Indigenous peoples in the province. Methods This study began

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Keightley, P., R. Prematunga, P. Hoffmann, and K. Subramaniam. "P677 It’s time to grow up: what is it like to transition from the paediatric to adult inflammatory bowel disease service?" Journal of Crohn's and Colitis 14, Supplement_1 (2020): S553. http://dx.doi.org/10.1093/ecco-jcc/jjz203.805.

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Abstract Background inflammatory bowel disease (IBD) is a chronic disease with an increasing incidence in the paediatric population. We explored the experiences of two groups of patients, those who transitioned directly from the paediatric to the adult service before the transitional IBD clinic was established, referred to as ‘adult’ and those who engaged in the new transitional clinic, referred to as ‘transitional’. Methods Sixteen (8 in each group as described above) out of 20 suitable patients participated. Patients were administered the IBD Questionnaire (IBDQ), Kessler Psychological Distr

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Michel, Hilary, Sandra Kim, Nalyn Siripong, and Robert Noll. "P047 PARENT PERSPECTIVES ON COMPREHENSIVE CARE FOR CHILDREN WITH INFLAMATORY BOWEL DISEASES: BUILDING A CARE DELIVERY MODEL FROM THE FAMILY UP." Inflammatory Bowel Diseases 26, Supplement_1 (2020): S64—S65. http://dx.doi.org/10.1093/ibd/zaa010.165.

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Abstract Background Patients with Inflammatory Bowel Diseases (IBD) require life-long management by gastroenterology (GI) and primary care providers (PCP). Guidelines exist outlining recommended healthcare services, but it is unclear which provider is responsible for which tasks, and what parents prefer. Aims To understand perceptions of healthcare quality and delivery for children with IBD, describe barriers to receiving comprehensive healthcare, and elicit preferences for how care would ideally be delivered. Methods Cross-sectional survey of parents of children ages 2–17 with IBD at a large,

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Vanhelst, Jérémy, Stéphanie Coopman, Julien Labreuche, et al. "Protocol of a randomised controlled trial assessing the impact of physical activity on bone health in children with inflammatory bowel disease." BMJ Open 10, no. 5 (2020): e036400. http://dx.doi.org/10.1136/bmjopen-2019-036400.

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IntroductionLow bone mineral density (BMD) is a frequent issue in children and adolescents with inflammatory bowel disease (IBD). Several studies in healthy populations have reported a positive impact of physical activity (PA) on bone health. Recently, an observational study in paediatric patients with IBD showed a significant positive relationship between daily PA and BMD. However, intervention studies investigating a causal relationship between PA and BMD are warranted to confirm these results. The aim of this randomised controlled trial will be to investigate the effect of a PA programme on

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Koletzko, Leandra, Elisabeth Klucker, Thu Giang Le Thi, et al. "Following Pediatric and Adult IBD Patients through the COVID-19 Pandemic: Changes in Psychosocial Burden and Perception of Infection Risk and Harm over Time." Journal of Clinical Medicine 10, no. 18 (2021): 4124. http://dx.doi.org/10.3390/jcm10184124.

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Background: COVID-19-associated restrictions impact societies. We investigated the impact in a large cohort of inflammatory bowel disease (IBD) patients. Methods: Pediatric (pIBD) and adult patients and pIBD parents completed validated questionnaires for self-perceived stress (Perceived Stress Questionnaire, PSQ) and quality of life from July to October 2020 (1st survey) and March to April 2021 (2nd survey). Analyses were stratified by age groups (6–20, >20–40, >40–60, >60 years). Perceived risk of infection and harm from COVID-19 were rated on a 1–7 scale. An index for severe outcome

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Klomberg, R., P. Kemos, M. Aardoom, et al. "P114 Frequent work productivity and activity impairment in caregivers of children with inflammatory bowel disease: a project of the prospective PIBD-SETQuality inception cohort study." Journal of Crohn's and Colitis 15, Supplement_1 (2021): S206—S207. http://dx.doi.org/10.1093/ecco-jcc/jjab076.241.

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Abstract Background Paediatric inflammatory bowel disease (IBD) can disrupt daily lives of patients and their caregivers, who may be impaired in performing work or daily activities due to increased caretaking responsibilities, accompanying to frequent hospital visits and increased school absence of their children. However, literature on these impairments is sparse. The aims of this study were to longitudinally quantify this work and activity impairment and evaluate associated factors. Second, to assess the impact of these impairments on caregiver’s health-related quality of life (HRQoL). Metho

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Maya, Bianca, Caroline Kruse, Susan D. Mathias, and Michael D. Tarantino. "A Pilot Study to Assess Quality of Life in Older Children and Adolescents with Primary Immune Thrombocytopenia." Blood 124, no. 21 (2014): 4843. http://dx.doi.org/10.1182/blood.v124.21.4843.4843.

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Abstract Background: Primary immune thrombocytopenia (ITP) is characterized by immune-mediated platelet destruction and impaired platelet production which may result in severe and chronic, symptomatic thrombocytopenia in a considerable minority of patients. The impact of chronic ITP (cITP) on the health-related quality of life (HRQoL), as it occurs in children, is not well defined. Methods: We administered a validated, age-appropriate HRQoL instrument, the Kids ITP Tools (KIT) (Klaassen, et al. 2007) consisting of 27 questions to assess the HRQoL of older children and adolescents with cITP and

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Koletzko, L., E. Klucker, G. Le Thi, et al. "P341 Perceived risks and psychosocial burden during the COVID-19 pandemic in a large cohort of pediatric and adult patients with Inflammatory Bowel Disease." Journal of Crohn's and Colitis 15, Supplement_1 (2021): S365—S366. http://dx.doi.org/10.1093/ecco-jcc/jjab076.465.

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Abstract Background The COVID-19 pandemic induced restrictions in daily life and anxiety especially in vulnerable parts of the population. We investigated the psycho-social burden of the pandemic and self-perceived risk and harm in a large IBD cohort. Methods In this monocentric prospective observational study, pediatric (pIBD) and adult patients completed questionnaires related to their IBD (phenotype, disease activity, treatment), comorbidities, demographic and socioeconomic factors, validated tools on Perceived Stress (PSQ) and quality of life (sIBDQ). They judged perception of harm in case

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Coskun, U., K. Kelly, T. Hunter, L. Newton, T. Symonds, and L. Delbecque. "P224 Crohn’s disease experiences among a paediatric population: A qualitative study reviewing the agreement of symptoms discussed by children and adolescents." Journal of Crohn's and Colitis 14, Supplement_1 (2020): S254—S255. http://dx.doi.org/10.1093/ecco-jcc/jjz203.353.

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Abstract Background Crohn’s disease (CD) is a type of inflammatory bowel disease that can occur at any age. CD symptoms can have a significant impact on health-related quality of life (HRQL). Although key symptoms and impacts of CD in adults are well-known, they have not been well explored or documented in children and adolescents. The objective of this study was to explore the similarities and differences in CD symptoms and impacts across various age groups (children and adolescents) and develop a list of most common symptoms and impacts for these populations. Methods Children (ages 5–11 year

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Gianolio, L., V. Silvera, M. Quaglia, et al. "P0534 School-related challenges in paediatric Inflammatory Bowel Diseases and the role of patient associations: results from a national survey of over 350 italian paediatric patients." Journal of Crohn's and Colitis 19, Supplement_1 (2025): i1088—i1090. https://doi.org/10.1093/ecco-jcc/jjae190.0708.

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Abstract Background In patients with IBD quality of life (QoL) is a fundamental long-term therapeutic target1. Given the significant role that school plays in the daily lives of paediatric patients, understanding its impact on their QoL is crucial2. The present study aimed to evaluate patients’ perspectives on their relationship with school, with the goal of identifying areas for practical improvement. Methods An anonymized survey was distributed (02/2020-11/2024) to all paediatric IBD patients and families registered with the Italian patient association AMICI. Data collected included disease

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Sandell, Angela, Hilary Michel, and Barbara Folb. "P036 ADULT AND PEDIATRIC PATIENT AND PARENT ATTITUDES, PERCEPTIONS, AND EXPERIENCES WITH NUTRITIONAL THERAPIES FOR INFLAMMATORY BOWEL DISEASES: A SYSTEMATIC REVIEW." Inflammatory Bowel Diseases 26, Supplement_1 (2020): S60. http://dx.doi.org/10.1093/ibd/zaa010.153.

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Abstract Background Nutritional therapy, including exclusive enteral nutrition (EEN), partial enteral nutrition (PEN), the Crohn’s Disease Exclusion Diet (CDED), and the Specific Carbohydrate Diet (SCD), can be used as adjunct or primary treatment for inflammatory bowel diseases (IBD). Patient and parent attitudes and experiences regarding nutritional therapy affect the decision to use them as treatment, and ultimately, their success. Aims We aimed to summarize existing literature exploring patient and parent attitudes and experiences regarding using nutritional therapy for IBD. Methods We com

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Pelly, T. "P0785 Protocol for a Priority Setting Partnership to identify the top 10 global research priorities for perianal Crohn’s disease." Journal of Crohn's and Colitis 19, Supplement_1 (2025): i1516. https://doi.org/10.1093/ecco-jcc/jjae190.0959.

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Abstract Background Perianal Crohn’s disease (pCD) occurs in around 18.7% of patients with Crohn’s disease (1). This manifestation is associated with significant morbidity and impact on the quality of life of affected patients, as well as high healthcare resource utilisation and costs (2). Perianal Crohn’s disease often requires prolonged treatment and multiple interventions. Options for treatments and their efficacy, impact on QoL, use of setons, stomas and proctectomy need further investigation to establish optimal methods (3). A collaborative and patient-centred process is required to prior

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Screti, Cassandra, Lou Atkinson, Rachel Shaw, Rafeeq Muhammed, and Gemma Heath. "A Self-led Self-management Intervention Supporting Teens with IBD (ASSIST-IBD): protocol for a feasibility study of a novel digital treatment adherence intervention." BMJ Open 14, no. 10 (2024): e085576. http://dx.doi.org/10.1136/bmjopen-2024-085576.

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IntroductionTreatment non-adherence is common in young people with inflammatory bowel disease (IBD), yet support is lacking. A self-led self-management intervention supporting teens with IBD (ASSIST-IBD) is a new theory-based digital treatment adherence intervention, co-developed by young people living with IBD. ASSIST-IBD includes 10 short modules supporting adolescents to feel confident to follow their treatment plan, develop skills to overcome adherence obstacles, feel confident when talking to others about IBD and feel positive about the future. This research aims to determine the feasibil

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Chis, R., N. Jawaid, Y. Fu, and N. Bollegala. "A81 BARRIERS AND FACILITATORS OF PEDIATRIC TO ADULT TRANSITION IN IBD: A PILOT STUDY EVALUATING THE STAKEHOLDER EXPERIENCE." Journal of the Canadian Association of Gastroenterology 4, Supplement_1 (2021): 49–51. http://dx.doi.org/10.1093/jcag/gwab002.079.

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Abstract Background Inflammatory bowel disease (IBD) is increasing in prevalence with up to 25% of IBD patients diagnosed before 18 years of age. These patients will require graduation from pediatric care to adult services. The transition of care from pediatric to adult gastroenterologists (GIs) is a purposeful transition that requires planning with involvement of all stakeholders to ensure proper transition and avoid interruption in care. Aims To identify the transition experiences of adult patients with pediatric diagnoses of IBD, their parents, pediatric and adult GIs and registered nurses

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Velasco Rodríguez-Belvís, M., L. M. Palomino Pérez, G. Pujol Muncunill, et al. "P993 IMPACT-III and IMPACT-III-P questionnaires: the transcultural adaptation and validation in Spanish families. A SEGHNP (Spanish Society of Pediatric Gastroenterology, Hepatology and Nutrition) multicenter study." Journal of Crohn's and Colitis 18, Supplement_1 (2024): i1802—i1803. http://dx.doi.org/10.1093/ecco-jcc/jjad212.1123.

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Abstract Background IMPACT-III and IMPACT-III-P are Health-Related Quality of Life (HRQoL) questionnaires for pediatric Inflammatory Bowel Disease (p-IBD) patients and their parents/caregivers. They consist of 35 items answered with a 1-5 points Likert scale that evaluate six domains. Higher scores indicate better HRQoL. IMPACT-III has been translated into over 70 languages and validated in several countries. However, the existing IMPACT-III Spanish translation showed room for improvement and none of the tools had been validated in our population. We aimed to perform a transcultural adaptation

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SPATARU, Teodora, Ana Maria BAICEANU, Remus POPESCU, and Lucian NEGREANU. "Bowel Urgency in Inflammatory Bowel Disease." Medicina Moderna - Modern Medicine 32, no. 2 (2025): 111–16. https://doi.org/10.31689/rmm.2025.32.2.111.

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Inflammatory bowel disease (IBD) significantly impacts the patient’s quality of life with chronic disabling symptoms such as diarrhea, abdominal pain, bowel urgency, weight loss, fatigue. Bowel urgency, the sudden or immediate need for a bowel movement, is distinct from increased stool frequency and its underlying mechanisms are multifactorial and may vary within and between patients being driven primarily by active inflammation. It is one of the most bothersome symptoms experienced by patients with ulcerative colitis, with substantial negative impacts on quality of life and psychosocial funct

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Love, Jonathan R., E. Jan Irvine, and Richard N. Fedorak. "Quality of Life in Inflammatory Bowel Disease." Journal of Clinical Gastroenterology 14, no. 1 (1992): 15–19. http://dx.doi.org/10.1097/00004836-199201000-00005.

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Trindade, Inês A., Cláudia Ferreira, and José Pinto-Gouveia. "Inflammatory bowel disease: The harmful mechanism of experiential avoidance for patients’ quality of life." Journal of Health Psychology 21, no. 12 (2016): 2882–92. http://dx.doi.org/10.1177/1359105315587142.

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This study aimed to test the effects of inflammatory bowel disease symptomatology and associated medical complications on physical and psychological quality of life and to explore whether these relationships are mediated by experiential avoidance. A total of 200 inflammatory bowel disease patients reported demographic and medical data and completed self-report instruments. Results revealed that the tested model presented an excellent fit, explaining 51 per cent of physical quality of life and 53 per cent of psychological quality of life. Inflammatory bowel disease–associated complications dire

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Irvine, E. J. "Quality of Life–Measurement in Inflammatory Bowel Disease." Scandinavian Journal of Gastroenterology 28, sup199 (1993): 36–39. http://dx.doi.org/10.3109/00365529309098355.

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Drossman, Douglas A. "Measuring Quality of Life in Inflammatory Bowel Disease." PharmacoEconomics 6, no. 6 (1994): 578–80. http://dx.doi.org/10.2165/00019053-199406060-00010.

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Perrin, James M., Karen Kuhlthau, Aziz Chughtai, et al. "MEASURING QUALITY OF LIFE IN INFLAMMATORY BOWEL DISEASE." Journal of Pediatric Gastroenterology and Nutrition 41, no. 4 (2005): 543. http://dx.doi.org/10.1097/01.mpg.0000182017.07817.b9.

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CALIXTO, Raquel Pellizzari, Cristina FLORES, and Carlos Fernando FRANCESCONI. "INFLAMMATORY BOWEL DISEASE: IMPACT ON SCORES OF QUALITY OF LIFE, DEPRESSION AND ANXIETY IN PATIENTS ATTENDING A TERTIARY CARE CENTER IN BRAZIL." Arquivos de Gastroenterologia 55, no. 3 (2018): 202–7. http://dx.doi.org/10.1590/s0004-2803.201800000-54.

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ABSTRACT BACKGROUND: Inflammatory bowel disease frequently affects patients at working age, compromising their quality of life in several levels: physical, psychological, familial and social. Few studies have evaluated the impact of Inflammatory bowel disease on quality of life, anxiety and depression in Brazilian patients. OBJECTIVE: Evaluate quality of life and its correlation with psychological aspects of patients with inflammatory bowel disease through the Inflammatory Bowel Disease Questionnaire and Hospital Anxiety and Depression Scale. METHODS: Cross-sectional study; Inflammatory Bowel

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Farmer, Richard G. "The Social Toll of Inflammatory Bowel Disease." Canadian Journal of Gastroenterology 8, no. 7 (1994): 433–37. http://dx.doi.org/10.1155/1994/207267.

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Inflammatory bowel disease (IBD) – ulcerative colitis and Crohn’s disease – has become one the most important chronic digestive disorders found in the younger population. As a result of the nature of the illness, with remission and exacerbation of the inflammatory process, there has been increasing concern regarding the costs, both financial and social, of IBD. There have been attempts to quantify disease activity and to assess the results of treatment and the ability of the patient to function in society. As a result, there has been an increased interest in the ‘social toll’ of IBD. Begi1ming

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