Journal articles: 'Stickler Syndrome Support Group'

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Glander, Karl, and George J. Cisneros. "Comparison of the Craniofacial Characteristics of Two Syndromes Associated with the Pierre Robin Sequence." Cleft Palate-Craniofacial Journal 29, no. 3 (May 1992): 210–19. http://dx.doi.org/10.1597/1545-1569_1992_029_0210_cotcco_2.3.co_2.

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The craniofacial characteristics of two syndromes commonly associated with Robin sequence were compared for 49 subjects. Lateral cephalograms were analyzed for four groupings: Group I—Stickler syndrome with versus without Robin, Group II—velocardlofacial (VCF) syndrome with versus without Robin, Group III—Stickler without Robin compared to VCF without Robin, and Group IV—Stickler with Robin compared to VCF with Robin. Thirty-two skeletal and 18 soft tissue measurements were compared. In Group I, three skeletal measurements were significantly different (SNA, SNB, and SNPg). In Group II, no significant difference was found for any of the 50 measurements. In Group III, a significant difference was demonstrated for seven parameters (one skeletal, six pharyngeal and airway). In Group IV, two skeletal and eight airway measures were significantly different. The findings Indicate that the relative maxillary and mandibular retrognathia observed in Stickler/Robin patients may predispose them to the Robin sequence and vice versa; the Robin features In VCF may be caused by hypotonia rather than any craniofacial or physical obstruction of the airway; Stickler and VCF are similar in craniofacial morphology but show marked differences in pharyngeal and airway morphology; and cephalometrics should not be the sole prognosticator of the Robin sequence and Its association with Stickler and VCF.

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Goyal, Manisha, Seema Kapoor, Shiro Ikegawa, and Gen Nishimura. "Stickler Syndrome Type 1 with Short Stature and Atypical Ocular Manifestations." Case Reports in Pediatrics 2016 (2016): 1–3. http://dx.doi.org/10.1155/2016/3198597.

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Stickler syndrome or hereditary progressive arthroophthalmopathy is a heterogeneous group of collagen tissue disorders, characterized by orofacial features, ophthalmological features (high myopia, vitreoretinal degeneration, retinal detachment, and presenile cataracts), hearing impairment, mild spondyloepiphyseal dysplasia, and/or early onset arthritis. Stickler syndrome type I (ocular form) is caused by mutation in the COL2A1 gene. Ptosis and uveitis are relatively rare ophthalmological manifestations of this syndrome. We report an Indian boy having 2710C>T mutation in COL2A1 gene demonstrating short stature, ptosis, and uveitis with Stickler syndrome.

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Snead, Martin, Howard Martin, Peter Bale, Nick Shenker, David Baguley, Philip Alexander, Annie McNinch, and Arabella Poulson. "Therapeutic and diagnostic advances in Stickler syndrome." Therapeutic Advances in Rare Disease 1 (January 2020): 263300402097866. http://dx.doi.org/10.1177/2633004020978661.

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The Stickler syndromes are the leading cause of inherited retinal detachment and the most common cause of rhegmatogenous retinal detachment in childhood. The clinical and molecular genetic spectrum of this connective tissue disorder is discussed in this article, emphasising the key role the ophthalmologist has to play in the identification, diagnosis and prevention of blindness in the increasingly widely recognised sub-groups with ocular-only (or minimal systemic) involvement. Without diagnosis and prophylaxis in such high-risk subgroups, these patients are at high risk of Giant Retinal Tear detachment and blindness, especially in the paediatric population, where late or second eye involvement is common. Initially considered a monogenic disorder, there are now known to be at least 11 distinct phenotypic subgroups in addition to allied connective tissue disorders that can present to the clinician as part of the differential diagnosis. Plain language summary Treatment and diagnostic advances in Stickler syndrome The Stickler syndromes are a group of related connective tissue disorders that are associated with short-sight and a very high risk of blindness from detachment of the retina – the light sensitive film at the back of the eye. Other features include cleft palate, deafness and premature arthritis. It is the most common cause of retinal detachment in children and the most common cause of familial or inherited retinal detachment. In contrast to most other forms of blinding genetic eye disease, blindness from retinal detachment in Stickler syndrome is largely avoidable with accurate diagnosis and prophylactic (preventive) surgery. Recent advances in the understanding of the genetic causes of Stickler syndrome mean that the diagnosis can now be confirmed in over 95% of cases and, most importantly, the patient’s individual risk of retinal detachment can be graded. Preventative surgery is hugely effective in reducing the incidence of retinal detachment in those patients shown to be at high risk. NHS England have led the way in the multidisciplinary care for patients with Stickler syndrome by launching a highly specialist service that has been free at point of care to all NHS patients in England since 2011 ( https://www.england.nhs.uk/commissioning/spec-services/highly-spec-services , www.vitreoretinalservice.org )

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Ton, Nguyen Dang, Pham Minh Chau, Duong Thu Trang, Nguyen Thi Xuan, Nguyen Xuan Hiep, and Nguyen Hai Ha. "Whole exome sequencing identified a pathogenic mutation of COL2A1 causing Stickler syndrome in a Vietnamese family." Vietnam Journal of Biotechnology 18, no. 4 (May 24, 2021): 609–15. http://dx.doi.org/10.15625/1811-4989/18/4/15728.

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Stickler syndrome is a group of rare inherited diseases associated with abnormalities in connective tissues, specifically collagen of the eyes, ears, craniofacies, skeleton and joints. The inheritance pattern of this disease is either an autosomal dominant or an autosomal recessive based on the causative gene. Stickler syndrome is characterized by severe nearsightedness, vitreous abnormalities, distinctive facial features, hearing problems and joint anomalies. Herein, we report a case of a 37-year-old man from Vietnam suspected of Stickler syndrome, presenting a phenotype of retinal detachment and complete loss of vision, and his 3-year-old son with congenital high myopia and vitreous abnormalities. Genetic analysis using whole exome sequencing (WES) revealed a nucleotide substitution (c.C2818T/p.R940X) in exon 42 of the COL2A1 gene that was previously reported as a pathogenic variant causing Stickler syndrome. Validation of COL2A1 c.C2818T in all members of this family by using Sanger sequencing detected the presence of this pathogenic variant in the heterozygous form in the affected father and son but not in the mother and another son without any signs of a vision problem. Thus, our study contributes to not only the knowledge base of clinical and genetic aspects of Stickler syndrome in Vietnam but also the awareness of the importance of genetic counseling in patients with COL2A1 c.C2818T mutation, as well as early diagnosis and appropriate treatment to prevent serious complications, especially blindness.

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&NA;. "Shwachman Syndrome Support Group." Journal of Pediatric Gastroenterology and Nutrition 20, no. 1 (January 1995): 119. http://dx.doi.org/10.1097/00005176-199501000-00028.

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&NA;. "Shwachman Syndrome Support Group." Journal of Pediatric Gastroenterology and Nutrition 20, no. 2 (February 1995): 243. http://dx.doi.org/10.1097/00005176-199502000-00025.

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&NA;. "A Guillian-Barré Syndrome Support Group." Neurology Report 17, no. 3 (1993): 39. http://dx.doi.org/10.1097/01253086-199317030-00022.

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Carlsen, Benedicte. "Professional support of self-help groups: a support group project for Chronic Fatigue Syndrome patients." British Journal of Guidance & Counselling 31, no. 3 (August 2003): 289–303. http://dx.doi.org/10.1080/0306988031000147884.

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Steinberg, A. S., and A. L. Voskov. "Work of Support Group for Adults with Asperger’s Syndrome in Russia." Autism and Developmental Disorders 18, no. 2 (2020): 55–62. http://dx.doi.org/10.17759/autdd.2020180208.

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Problems with Asperger's syndrome diagnostic in adults in Russia and obsolete practice of replacement of the diagnosis after age of 18 caused necessity of organization of specialized supports and efforts for social adaptation of such individuals. Experience of organization and leading the support group (that works since 2010) for adults with Asperger’s syndrome and high functioning autism is described: conditions, rules and recommendations for its organization. The discussed topics include autism awareness, social integration, personal relationships, autism symptoms and coping strategies, independent life. The participants report that the group is beneficial as a comfortable place for socialization, life experience exchange, development of self-acceptance, self-awareness and independent life skills. Involvement of psychologists in leading of some group meetings showed the necessity to extend their knowledge about autism spectrum disorders in adults. A review of screening tests and other aspects of self-diagnosis is given. Analysis of functioning of the support group for people with Asperger's syndrome and high-functioning autism confirmed large demand on this kind of help and its necessity for improving life quality.

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Walker, Kimberly K. "Cognitive and Affective Uses of a Thoracic Outlet Syndrome Facebook Support Group." Health Communication 29, no. 8 (October 30, 2013): 773–81. http://dx.doi.org/10.1080/10410236.2013.800830.

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Wasant, Pornswan. "AB125. Down syndrome parents support group in Thailand: twenty-five years experiences." Annals of Translational Medicine 5, S2 (September 2017): AB125. http://dx.doi.org/10.21037/atm.2017.s125.

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Percy, Carol A., Tineke Gibbs, Lynne Potter, and Shirine Boardman. "Nurse-led peer support group: experiences of women with polycystic ovary syndrome." Journal of Advanced Nursing 65, no. 10 (October 2009): 2046–55. http://dx.doi.org/10.1111/j.1365-2648.2009.05061.x.

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Wilson, Leah M., Russell R. Cross, and P. Barton Duell. "Reduced psychological distress in familial chylomicronemia syndrome after patient support group intervention." Journal of Clinical Lipidology 12, no. 1 (January 2018): 240–42. http://dx.doi.org/10.1016/j.jacl.2017.11.002.

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Rezaee, Hajar, Fariba Mahamed, and Maryam Amidi Mazaheri. "Does Spousal Support Can Decrease Women's Premenstrual Syndrome Symptoms?" Global Journal of Health Science 8, no. 5 (August 23, 2015): 19. http://dx.doi.org/10.5539/gjhs.v8n5p19.

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Premenstrual syndrome is a syndrome that includes behavioral and physical symptoms occurring in the second half of the menstrual cycle and this syndrome affects millions of women universal. With regard to the importance of spouse participation in promoting reproductive and women's health, the aim of this study was to determine the effect of educational intervention for spouse on women's premenstrual syndrome symptoms. This quasi -experimental study was down with the participation of 100 women of reproductive age with PMS were referred to health centers Falavarjan city in 2015. Women were divided randomly into two groups as intervention and control. Educational intervention about supportive behaviors to control premenstrual symptoms was performed for spouses during the three educational sessions in the intervention group. Data was obtained with self-administered questionnaire before and three months after educational intervention and were analyzed by SPSS21 and appropriate statistical tests. Three mounts after the intervention the score of spouse’s supportive behaviors was increased significantly compare to before of the educational intervention and the control group. As well as significant decrease was occurred in case of physical and psychological-behavioral symptoms of women in the intervention group compare to before the intervention and control groups (p<0.05). Spouse’s supportive behaviors can reduce PMS symptoms in women. As a result, it is recommended that the health care system organize the educational intervention to increase spouse supportive behaviors.

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Santika, Azzumar Adhitia, Firstty Soraya Anugraheny, and Yasmin Alvina. "Dukungan Sosial Orang Tua Anak dengan Down Syndrome dalam Grup WhatsApp." PERSPEKTIF 9, no. 2 (May 9, 2020): 329–37. http://dx.doi.org/10.31289/perspektif.v9i2.3653.

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Discrimination towards children with down syndrome is still happening. Courtesy stigma concept makes parents with down syndrome children feel discrimination. Parents are the sole social support of the child. POTADS purpose as a platform for other Indonesians’ parents and children to show their support with each other who faced the same problem. They can support it through WhatsApp group and open for anyone who faced discrimination. Phenomenology method used to find how the consciousness of four informants called by Mrs. Leli, Mrs. Ni Luh, Mrs. Ernie, and Mrs. Nunung in using POTADS WhatsApp group. The conscious experiences will create an interpretation of it. In-depth interviews were conducted to obtain research data. The result shows that this group is beneficial because, in addition to being able to get useful information support for childcare, they also get the emotional support that is useful as a shield against courtesy stigma. The support they get from the WhatsApp group is further enhanced when there is a face-to-face meeting.

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Corines, Marina J., Jada G. Hamilton, Emily Glogowski, Chris A. Anrig, Rachael Goldberg, Kate Niehaus, Erin Salo-Mullen, et al. "Educational and Psychosocial Support Needs in Lynch Syndrome: Implementation and Assessment of an Educational Workshop and Support Group." Journal of Genetic Counseling 26, no. 2 (October 12, 2016): 232–43. http://dx.doi.org/10.1007/s10897-016-0015-1.

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Gasser, Benedikt Andreas, Johann Kurz, Bernhard Dick, and Markus Georg Mohaupt. "Steroid Metabolites Support Evidence of Autism as a Spectrum." Behavioral Sciences 9, no. 5 (May 9, 2019): 52. http://dx.doi.org/10.3390/bs9050052.

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Objectives: It is common nowadays to refer to autism as a spectrum. Increased evidence of the involvement of steroid metabolites has been shown by the presence of stronger alterations in Kanner’s syndrome compared with Asperger syndrome. Methods: 24 h urine samples were collected from 20 boys with Asperger syndrome, 21 boys with Kanner’s syndrome, and identically sized control groups, each matched for age, weight, and height for comprehensive steroid hormone metabolite analysis via gas chromatography–mass spectrometry. Results: Higher levels of most steroid metabolites were detected in boys with Kanner’s syndrome and Asperger syndrome compared to their matched controls. These differences were more pronounced in affected individuals with Kanner’s syndrome versus Asperger syndrome. Furthermore, a specific and unique pattern of alteration of androsterone, etiocholanolone, progesterone, tetrahydrocortisone, and tetrahydrocortisol was identified in boys with Kanner’s syndrome and Asperger syndrome. Interestingly, in both matched samples, only androsterone, etiocholanolone, progesterone, tetrahydrocortisone, tetrahydrocortisol, and 5a-tetrahydrocortisol groups were positively correlated. In the Asperger syndrome group, all metabolites showed a positive correlation. In the Kanner’s syndrome group, 5-a tetrahydrocortisol with androsterone showed a positive correlation. Conclusions: Due to differences in the level of alteration, the premise that Asperger syndrome is on the mild side of the autism spectrum and that Kanner’s syndrome is on the severe side is supported, but alteration patterns yield different phenotypic expressions.

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Becker, Talia, Yafit Hamzani, Gavriel Chaushu, Shlomit Perry, and Bahaa Haj Yahya. "Support Group as a Management Modality for Burning Mouth Syndrome: A Randomized Prospective Study." Applied Sciences 11, no. 16 (August 5, 2021): 7207. http://dx.doi.org/10.3390/app11167207.

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We aimed to investigate the effectiveness of a support group in the management of burning mouth syndrome (BMS). The cohort included 22 adult patients with BMS who attended the oral and maxillofacial department of a tertiary medical center in 2014–2019 and agreed to participate in the study. Eleven patients were assigned to a support group and took part in 90 min sessions held once weekly for 4 weeks (a total of 4 sessions), and the remainder continued their previous individual BMS management routine (control group). All patients completed a life-quality questionnaire before and 3 months after the group sessions. Scores for each group were compared between the two time points with a Wilcoxon signed-rank test. There was a significant decrease in scores for malaise (p = 0.041), total pain (p = 0.046), and difficulty enjoying food (p = 0.026) before and after the group sessions in the study group. No significant changes were found in the control group in any of the parameters examined. A group support can alleviate pain and other clinical symptoms of BMS. Further longer-term prospective studies are needed to corroborate our findings.

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Shuster, Jill, Jana McCormack, Rebecca Pillai Riddell, and Maggie E. Toplak. "Understanding the Psychosocial Profile of Women with Fibromyalgia Syndrome." Pain Research and Management 14, no. 3 (2009): 239–45. http://dx.doi.org/10.1155/2009/134808.

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Fibromyalgia syndrome (FMS) is a disease with a complex etiology characterized by symptoms of widespread pain and fatigue. FMS is more common in women. Both depression and anxiety have been found to be independently associated with the severity of pain in symptoms of FMS. The goal of the present study was to examine the psychosocial profile of women with FMS and to see how the attributions, perceived social support and cognitive biases of women with FMS are related to internalizing ratings of depression and anxiety. The current study included a sample of women with FMS from a local support group and a control group to examine how women with FMS differed from controls with respect to psychosocial variables, and to determine the relationship between these variables. Women with FMS reported a higher external locus of control, lower levels of adaptive cognitive bias, less perceived family support and lower mood than controls. Correlations between these variables were examined within the FMS group, and it was found that an external locus of control was significantly associated with higher ratings of anxiety and depressed mood. These results suggest that beliefs about locus of control and perceived family support of women with FMS may importantly impact their health outcomes, and that treatments related to locus of control and advocating for family support may considerably improve the quality of life of patients with FMS.

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Lees, Simon J., and Frank W. Booth. "Sedentary Death Syndrome." Canadian Journal of Applied Physiology 29, no. 4 (August 1, 2004): 447–60. http://dx.doi.org/10.1139/h04-029.

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Sedentary death syndrome (SeDS) is a major public health burden due to its causing multiple chronic diseases and millions of premature deaths each year. Despite the impact of physical inactivity, very little is known about the actual causes of physical inactivity-induced chronic diseases. It is important to study the mechanisms underlying molecular changes related to physical inactivity in order to better understand the scientific basis of individualized exercise prescription and the rapies for chronic diseases, and to support improved public health efforts by providing molecular proof that physical inactivity is an actual cause of chronic diseases. Physical activity has a genetic basis. A subpopulation of genes, which have functioned to support physical activity for survival through most of humankind's existence, require daily exercise to maintain long-term health and vitality. Type 2 diabetes (T2D) is an example of a SeDS condition, as it is almost entirely preventable with physical activity. To determine the true role of physical inactivity in the development and progression of T2D, information is presented which indicates that comparisons should be made to physically active controls, rather than sedentary controls, as this population is the healthiest. Use of sedentary subjects as the control group has led to potentially misleading interpretations. If physically active individuals were designated as the control group, a different interpretation would have been drawn. It is thought that there is no difference in GLUT4 concentration between T2D and sedentary groups. However, GLUT4 expression is higher in active controls than in sedentary and T2D groups. Therefore, to obtain causal mechanisms for SeDS in order to allow for scientifically based prevention and therapy strategies, physically active subjects must serve as the control group. Key words: physical inactivity, chronic diseases, diabetes, glucose

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Coulson, Neil S. "Receiving Social Support Online: An Analysis of a Computer-Mediated Support Group for Individuals Living with Irritable Bowel Syndrome." CyberPsychology & Behavior 8, no. 6 (December 2005): 580–84. http://dx.doi.org/10.1089/cpb.2005.8.580.

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Kemal, Achmad, Irfan Deliandra, Renny Julianti, Kartika Iswaranti, Melisa Silvia, Kresna Mutia, Mila Maidarti, and Budi Wiweko. "Knowledge and Attitude in Indonesian Patients and Parents of Patient with Turner Syndrome towards Fertility Treatment." KnE Medicine 1, no. 1 (January 1, 2017): 180. http://dx.doi.org/10.18502/kme.v1i1.639.

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The objective of the study was to prospectively determine the knowledge and attitude in Indonesian girls and parents of patients diagnosed with Turner Syndrome (TS) towards future fertility treatment possibility. Data collected from in-depth interviews with 20 TS patients or parents. The first group was composed of 16 patients selected from Indonesian Turner Syndrome Society and 4 patients from dr. Cipto Mangunkusumo National Hospital Jakarta. All participants were stratified by characteristics, physical appearance, hormonal therapy and TS knowledge and attitude towards future fertility treatment possibility. More than half of the TS patients belong to the support grup have better knowledge than the patients in the non support group. This study showed that 31.25% patients from support group and 25% patients from non support group believed that TS patients still have normal social life, but still concern about TS fertility (support group 87% and non support group 100%). Most of them (support group 93.75% and non support group 100%) agree to have possible fertility treatment, but 31.25% of them insisted on lower cost of hormonal treatment and medication. The greatest barriers for accepting fertility preservation by the parents and TS patients were lack of information (41.2%), fear of complication (22.1%) and lower cost for hormonal treatment (15.3%).The challenges of counseling and fertility treatment for TS patients in Indonesia are the time pressure diagnosis and the possible fertility treatment and lack of knowledge about TS fertility condition by pediatric endocrinologist, fertility experts and parents; therefore a team consisting of pediatric endocrinologist, infertility specialists and support group is recommended in these setting.

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Walton, Judy, and Ellis Young Kin. "The Effect of a Support Group on Self‐Esteem of Women with Premenstrual Syndrome." Journal of Obstetric, Gynecologic & Neonatal Nursing 16, no. 3 (May 1987): 174–78. http://dx.doi.org/10.1111/j.1552-6909.1987.tb01454.x.

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Schon, Lew C., Terrence P. Glennon, and Donald E. Baxter. "Heel Pain Syndrome: Electrodiagnostic Support for Nerve Entrapment." Foot & Ankle 14, no. 3 (March 1993): 129–35. http://dx.doi.org/10.1177/107110079301400304.

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A local entrapment neuropathy has been proposed as one of the etiologies of heel pain, but it has never been documented by electrodiagnostic studies. Primary symptoms in patients suspected of having a neurologic basis for their heel pain include neuritic medial heel pain and radiation either proximally or distally. On physical examination, all patients in our series had reproduction of their symptomatology with palpation over the proximal aspect of the abductor hallucis and/or the origin of the plantar fascia from the medial tubercle of the calcaneus. Twenty-seven patients (20 women and seven men; average age 49) with these clinical characteristics were examined by electromyography and motor/sensory/mixed nerve conduction studies. Bilateral heel signs and symptoms were present in 11 patients. Ten of the patients had a significant history of back pain with referral to the legs. In 23 of the 38 symptomatic heels, abnormalities were identified in the lateral and/or the medial plantar nerves. The number of abnormal values per heel ranged from one to four, with a mean of 2.1. The most common finding was involvement of the medial nerve (57%). Thirty percent of the heels had isolated findings in the lateral plantar nerve and 13% had abnormalities in both plantar nerves. Two patients had electrophysiologic evidence of active S1 radiculopathy, with ipsilateral evidence of plantar nerve entrapment suggesting a “double crush” syndrome. The results of this study support the presence of abnormalities of plantar nerve function in a selected group of patients with neuritic heel pain.

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Jenkinson, Elizabeth, Kathleen Bogart, Claire Hamlet, and Laura Davies. "Living with Moebius syndrome." Journal of Aesthetic Nursing 9, no. 6 (July 2, 2020): 233–37. http://dx.doi.org/10.12968/joan.2020.9.6.233.

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Moebius syndrome is a congenital neurological disorder that impacts facial expression, communication and appearance. In this article, the authors will discuss the psychological and social impacts of living with this rare form of facial palsy. Existing research suggests that patients may face challenges in developing psychological wellbeing, positive body image and in communicating effectively with others. Therefore, recommendations for nursing practitioners in how to best support this patient group are discussed.

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Rau-Murthy, Rohini, Christopher Anrig, Emily Glogowski, Erin E. Salo-Mullen, Megan Harlan Fleischut, Kara Sarrel, Marina Corines, et al. "Needs assessment and utilization of an educational workshop and support group for Lynch syndrome patients." Journal of Clinical Oncology 31, no. 15_suppl (May 20, 2013): e12536-e12536. http://dx.doi.org/10.1200/jco.2013.31.15_suppl.e12536.

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e12536 Background: Lynch syndrome (LS) requires a lifelong commitment to multi-organ cancer surveillance and/or prophylactic surgery. Emotional and informational support for LS patients is not readily available. Through an LS Educational Workshop (LSEW) we assessed the need and interest in an educational and support group for LS families. Methods: LS patients identified at Memorial Sloan-Kettering Cancer Center (MSKCC) were sent LSEW invitations and a pre-workshop survey. All patients underwent prior genetic counseling. Though family members could attend, only index patients completed the surveys. All attendees were asked to complete both an evaluation of the LSEW and a needs assessment regarding implementation of a support group. Results: Invitations to 213 LS patients were mailed. Of 8 potential discussion topics, the most desired were chemoprevention and cancer screening recommendations. Thus, the 1st hour of the LSEW was a didactic session by physicians on these topics and LS research. The 2nd hour was a panel on patient experiences, family communication and Q&A. Fifty-three patients (25% of those invited) and 22 family members attended. The LSEW evaluation was completed by 26 index attendees, with 88% overall satisfied or extremely satisfied. Common requests for improvement were better division of informational and support aspects, and more Q&A. Of 23 who completed the needs assessment, 73% considered an LS support group as either somewhat or extremely useful. The group was equally divided on preference for a free-flow vs topic-focused approach; 57% felt a support group would have increased utility immediately after genetic testing. An in person venue was preferred by 87% over a virtual one, and 73% preferred every 3-6 month meetings. Respondents preferred a group inclusive of gender and cancer history. Based on this, the MSKCC Lynch Syndrome Patient Advocacy Network was created in 2012 with an in-person, every 4 month meeting facilitated by a social worker. Conclusions: Following genetic counseling, there is a continued need for informational sessions and support groups for LS patients/family members. Implementation of an in-person support group is feasible and responsive to the needs of our LS population.

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Tran, Christina, Jada G. Hamilton, Anne Lincoln, Marina Corines, Jacob Musinsky, Pragna Gaddam, Lauren M. Jacobs, et al. "Feasibility and long-term utility of a psychosocial support group for patients with Lynch syndrome." Journal of Clinical Oncology 34, no. 15_suppl (May 20, 2016): e21545-e21545. http://dx.doi.org/10.1200/jco.2016.34.15_suppl.e21545.

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Martíínez-Castilla, Pastora, and Maríía Sotillo. "Singing Abilities in Williams Syndrome." Music Perception 25, no. 5 (June 1, 2008): 449–69. http://dx.doi.org/10.1525/mp.2008.25.5.449.

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Musical skill has been included among the phenotypic strengths in Williams syndrome (WS), often considered as a superior ability. Nevertheless, limited research has been carried out on this skill. Singing abilities of a group of individuals with WS were compared with those of a control group of typically developing participants matched for chronological age. Both objective acoustic measurements and musicians' and nonmusicians' perceptions were obtained from singing tasks. Results showed that singing abilities were not superior or excellent in WS. Furthermore, singing abilities in individuals with WS could be impaired in comparison with typically developing peers.Music training facilitated sung performance in both participants with WS and their controls. However, only individuals with WS showed disadvantages in learning music. Results do not support the general view regarding outstanding musical abilities in WS.

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Schlagenhauf, Axel, Johannes Kalbhenn, Ulrich Geisen, Friedhelm Beyersdorf, and Barbara Zieger. "Acquired von Willebrand Syndrome and Platelet Function Defects during Extracorporeal Life Support (Mechanical Circulatory Support)." Hämostaseologie 40, no. 02 (May 2020): 221–25. http://dx.doi.org/10.1055/a-1150-2016.

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AbstractPatients with ventricular assist devices (VADs) and extracorporeal membrane oxygenation (ECMO) suffer from an increased risk for thromboembolic events as well as for hemorrhages. High shear stress in the mechanical device results in acquired von Willebrand syndrome (AVWS), characterized by a loss of high-molecular-weight multimers of von Willebrand factor (VWF) leading to an increased bleeding risk. Onset of AVWS occurs within hours, persists during the whole period of mechanical support, and subsides rapidly after explantation. Patients with the older HeartMate II exhibit more severe AVWS than those with the newer HeartMate III, thanks to lower shear stress in the latter. All ECMO and VAD patients exhibit thrombocytopathia and often thrombocytopenia which further increases the bleeding risk. Etiological models for AVWS are increased cleavage by the metalloproteinase ADAMSTS13, mechanical destruction of VWF, and shear-induced VWF binding to platelets. Platelet secretion defects may be caused by transient platelet activation leading to degranulation. AVWS can be diagnosed by detection of VWF multimers using gel-electrophoresis and functional assays of varying sensitivity (VWF ristocetin cofactor activity, VWF activity, VWF collagen binding). Platelet dysfunction is monitored using light transmission aggregometry and secretion defects are detectable using flow cytometry. Modest use of anticoagulants and a target-controlled therapy based on VWF parameters and other coagulation and platelet parameters are shown to be beneficial in this patient group. Persistent hemorrhages may be controlled with tranexamic acid and platelet concentrates. Prompt weaning from the device, when indicated, is the best therapeutic option to prevent recurrent bleeding.

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Shah, Nasir, Caroline Hing, Keith Tucker, and Robert Crawford. "Infected Compartment Syndrome after Acupuncture." Acupuncture in Medicine 20, no. 2-3 (August 2002): 105–6. http://dx.doi.org/10.1136/aim.20.2-3.105.

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We present a case of septicaemia and compartment syndrome of the leg in a diabetic patient, following acupuncture to his calf. An emergency decompression fasciotomy was performed on the patient and gram-positive cocci were grown from the posterior compartment wound swab cultures and group A streptococcus from his blood cultures. He remained in the Intensive Therapy Unit postoperatively, requiring inotropic support and intravenous antibiotics for his septicaemia. We would like to remind acupuncturists, to consider the possibility of heightened risks in immunocompromised patients.

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Stewart, Greig M., and Barry C. Gregory. "Themes of a Long-Term AIDS Support Group for Gay Men." Counseling Psychologist 24, no. 2 (April 1996): 285–303. http://dx.doi.org/10.1177/0011000096242009.

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Support groups are established psychosocial treatment modalties in which clients address issues resulting from particular problems or diagnoses. In the past decade, the support group format has been widely adopted by community health clinics for persons diagnosed with the acquired immunodeficiency syndrome (AIDS). As mainstream health systems assist more people with AlDS, initial expertise developed from the gay and lesbian health care response to the human immunodeficiency virus (HIR believed to be the cause of AlDS) provides valuable information for all health care practitioners. This discussion of a long-term (5-year) AIDS support group examines 6 content themes: marginity,making choices, coping with the emotional roller coaster, premature confrontation of life issues, living with a chronic illness versus dying with a terminal disease, and death and dying. The authors inform their observations through examining the support group literature for persons living with HIV and other chronic or terminal illnesses.

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Gaad, Eman. "The social and educational impacts of the first national Down Syndrome support group in the UAE." Journal of Research in Special Educational Needs 6, no. 3 (October 2006): 134–42. http://dx.doi.org/10.1111/j.1471-3802.2006.00071.x.

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Bafutto, Mauro, José Roberto de Almeida, Nayle Vilela Leite, Enio Chaves Oliveira, Salustiano Gabriel-Neto, and Joffre Rezende-Filho. "Treatment of postinfectious irritable bowel syndrome and noninfective irritable bowel syndrome with mesalazine." Arquivos de Gastroenterologia 48, no. 1 (March 2011): 36–40. http://dx.doi.org/10.1590/s0004-28032011000100008.

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CONTEXT: Recent studies support the hypothesis that postinfectious irritable bowel syndrome and some irritable bowel syndrome patients display persistent signs of minor mucosal inflammation. Mesalazine has intestinal anti-inflammatory properties including cyclooxygenase and prostaglandin inhibition. The effects of mesalazine on postinfectious irritable bowel syndrome and noninfective irritable bowel syndrome patients are still unknown. OBJECTIVE: To observe the effects of mesalazine on postinfectious irritable bowel syndrome and noninfective irritable bowel syndrome with diarrhea patients. METHODS: Based on Rome III criteria, 61 irritable bowel syndrome with diarrhea patients (18 years old or more) were included in the evaluation. Patients were divided into two groups: postinfectious irritable bowel syndrome group, with 18 patients medicated with mesalazine 800 mg 3 times a day for 30 days; noninfective irritable bowel syndrome group, with 43 patients medicated with mesalazine 800 mg 3 times a day for 30 days. Symptom evaluations at baseline and after treatment were performed by means of a four-point Likert scale including stool frequency, stool form and consistency (Bristol Stool Scale), abdominal pain and distension (maximum score: 16; minimum score: 4). RESULTS: Postinfectious irritable bowel syndrome group presented a statistically significant reduction of the total symptom score (P<0.0001). The stool frequency was significantly reduced (P<0.0001), and stool consistency, improved (P<0.0001). Abdominal pain (P<0.0001) and abdominal distension were significantly reduced (P<0.0001). Noninfective irritable bowel syndrome group presented a statistically significant reduction of total symptom score (P<0.0001). Also, the stool frequency was significantly reduced (P<0.0001) and stool consistency, improved (P<0.0001). Abdominal pain (P<0.0001) and abdominal distention were significantly reduced (P<0.0001). There was no statistical difference between postinfectious irritable bowel syndrome group and noninfective irritable bowel syndrome group on total symptom score results at 30th day of therapy with mesalazine 800 mg 3 times a day. (P = 0.13). CONCLUSION: Mesalazine reduced key symptoms of postinfectious irritable bowel syndrome and noninfective irritable bowel syndrome with diarrhea patients.

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Schubert, Simone Claire, Angela Kucia, and Anne Hofmeyer. "The Gap In Meeting The Educational And Support Needs Of Women With Takotsubo Syndrome Compared To Women With An Acute Coronary Syndrome." Contemporary Issues in Education Research (CIER) 11, no. 4 (October 5, 2018): 133–44. http://dx.doi.org/10.19030/cier.v11i4.10207.

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Background: Takotsubo Syndrome is a condition that causes impairment in cardiac function in the absence of significant causative coronary artery disease. Takotsubo Syndrome is most commonly reported in older women, has identical presenting symptoms to acute coronary syndrome (ACS),but differs in cause, management and outcomes. Ongoing symptoms and recurrence of Takotsubo Syndrome are not uncommon but little support is available for these women. Aims: This study compares (1) educational support and (2) participation rates in outpatient cardiac rehabilitation for women with Takotsubo Syndrome or acute coronary syndrome, and (3) ascertains whether or not they perceived similar benefits from these strategies. Methods: 23 women with Takotsubo Syndrome and 23 age-matched women with acute coronary syndrome were mailed a structured questionnaire based on cardiac rehabilitation (CR) components. Findings: The questionnaire response rate was 48% (n=11) for the Takotsubo Syndrome group and 30% (n=7) for the acute coronary syndrome group. 18% (n=2) of the women with Takotsubo Syndrome and 71% (n=5) of the women with acute coronary syndrome attended cardiac rehabilitation, with all attendees perceiving that it was beneficial in aiding their recovery. Of the nine women with Takotsubo Syndrome that did not attend cardiac rehabilitation, 67% (n=6) perceived that it would have been helpful in aiding their recovery. Women with Takotsubo Syndrome were less likely to receive educational support about their condition, particularly stress management and participate in CR compared with women with ACS, despite perceiving that elements of CR would have been helpful in aiding their recovery. Conclusions: Women with ACS had higher CR participation rates than those with Takotsubo Syndrome, and were more likely to receive educational support, particularly following hospital discharge. The majority of women with Takotsubo Syndrome were not exposed to educational support in their recovery, suggesting a role for CR tailored to the needs of these women. Nurses can take practical steps to address these gaps by providing emotional support and education for women with Takotsubo Syndrome in stress management to enhance their quality of life and reduce potential recurrence.

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Pereira, José Leonardo Faustini, Lucas Homercher Galant, Eduardo Garcia, Luis Henrique Telles da Rosa, Ajácio Bandeira de Mello Brandão, and Cláudio Augusto Marroni. "Ventilatory support and hospital stay after liver transplant in cirrhotic patients with hepatopulmonary syndrome." Einstein (São Paulo) 15, no. 3 (September 2017): 322–26. http://dx.doi.org/10.1590/s1679-45082017ao4081.

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ABSTRACT Objective To compare mechanical ventilation time, need for non-invasive ventilation, length of intensive care unit stay, and hospital stay after liver transplant in cirrhotic patients with and with no diagnosis of hepatopulmonary syndrome. Methods This was a prospective cohort study with a convenience sample of 178 patients (92 with hepatopulmonary syndrome) who were diagnosed as alcoholic or hepatitis C virus cirrhosis. The statistical analysis included Kolmogorov-Smirnov test and Students t test. Data were analyzed using SPSS version 16.0, and p values <0.05 were considered significant. Results Out of 178 patients, 90 underwent transplant (48 with no hepatopulmonary syndrome). The Group diagnosed with Hepatopulmonary Syndrome had longer mechanical ventilation time (19.5±4.3 hours versus 12.5±3.3 hours; p=0.02), an increased need for non-invasive ventilation (12 versus 2; p=0.01), longer intensive care unit stay (6.7±2.1 days versus 4.6±1.5 days; p=0.02) and longer hospital stay (24.1±4.3 days versus 20.2±3.9 days; p=0.01). Conclusion Cirrhotic patients Group diagnosed with Hepatopulmonary Syndrome had higher mechanical ventilation time, more need of non-invasive ventilation, as well as longer intensive care unit and hospital stay.

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Joga-Elvira, Lorena, Carlos Jacas, María-Luisa Joga, Ana Roche-Martínez, and Carme Brun-Gasca. "Bullying Victimization in Young Females with Fragile-X-Syndrome." Genes 11, no. 9 (September 11, 2020): 1069. http://dx.doi.org/10.3390/genes11091069.

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The aim of this study is to investigate the risk associated with girls with fragile X syndrome (FXS) suffering bullying in the role of a victim and its effects on their adaptive behavior, socialization style, and emotional state. A neuropsychological assessment was carried out on a sample of 40 participants (26 FXS positive and 14 control group) using the following instruments: WISC-V, SENA, BAS-2, ABAS-II. The results show that the group of girls with FXS presented higher ratios of lack of social support and isolation from classmates. This finding suggests that problems with social interaction and communication in the group of girls with FXS could lead to difficulties in interpreting social signals and identifying situations of bullying correctly, placing them in a very vulnerable situation.

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Asbury, E. A., C. M. Webb, and P. Collins. "Group support to improve psychosocial well-being and primary-care demands among women with cardiac syndrome X." Climacteric 14, no. 1 (February 2011): 100–104. http://dx.doi.org/10.3109/13697137.2010.499181.

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Virji-Babul, Naznin, Alexander Moiseev, Teresa Cheung, Daniel J. Weeks, Douglas Cheyne, and Urs Ribary. "Neural Mechanisms Underlying Action Observation in Adults With Down Syndrome." American Journal on Intellectual and Developmental Disabilities 115, no. 2 (March 1, 2010): 113–27. http://dx.doi.org/10.1352/1944-7588-115.2.113.

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Abstract Results of a magnetoencephalography (MEG) brain imaging study conducted to examine the cortical responses during action execution and action observation in 10 healthy adults and 8 age-matched adults with Down syndrome are reported. During execution, the motor responses were strongly lateralized on the ipsilateral rather than the contralateral side in the Down syndrome group. Observation of movement activated a network of cortical regions that was similar to the control group; however, there was no significant peak activity in the motor areas. In addition, the overall pattern of neural activation was more scattered and less organized in the Down syndrome group. These results further support the hypothesis of a dysfunction in the execution/observation matching system in adults with Down syndrome.

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Nelson Goff, Briana S., Nicole Springer, Laura Cline Foote, Courtney Frantz, Madison Peak, Courtney Tracy, Taylor Veh, Gail E. Bentley, and Kayli A. Cross. "Receiving the Initial Down Syndrome Diagnosis: A Comparison of Prenatal and Postnatal Parent Group Experiences." Intellectual and Developmental Disabilities 51, no. 6 (December 1, 2013): 446–57. http://dx.doi.org/10.1352/1934-9556-51.6.446.

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Abstract This study explored the preliminary experiences of parents upon learning of their child's diagnosis of Down syndrome. Qualitative data from a web-based, national survey were analyzed based on two groups: prenatal (n = 46) or postnatal (n = 115) diagnosis. Three primary categories emerged from the data analysis: prenatal screening/testing decisions by parents, the adjustment process for parents, and postdiagnosis resources and support for parents. Participants' rationale behind pursuing testing ranged from wanting to be better prepared to not pursuing testing because it was not a factor in continuing the pregnancy. Participant reactions to the diagnosis involved a range of intense preliminary emotions; participants described their extreme grief and loss experience at the initial news of the diagnosis, which also was ambiguous in nature and required differing timelines of adjustment. Finally, participants described experiences with medical professionals, information/education, and faith/religion as resources and areas of support, although not all were described as positive in nature. Participants in both groups identified having negative experiences with medical professionals during the diagnosis process. The results indicated the importance of these early experiences for parents of children with Down syndrome and emphasize providing effective education, resources, and practical information from reliable sources.

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Arayici, Sema, Fatma Nur Sari, Gulsum Kadioglu Simsek, Erbu Yarci, Evrim Alyamac Dizdar, Nurdan Uras, Fuat Emre Canpolat, and Serife Suna Oguz. "Lung Lavage with Dilute Surfactant vs. Bolus Surfactant for Meconium Aspiration Syndrome." Journal of Tropical Pediatrics 65, no. 5 (January 23, 2019): 491–97. http://dx.doi.org/10.1093/tropej/fmy081.

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Abstract Objective To compare the effectiveness of lung lavage with surfactant vs. bolus surfactant treatment in meconium aspiration syndrome (MAS). Patients and methods This randomized controlled trial included newborns ventilated with MAS. In lavage group (n = 17) 30 ml/kg of diluted porcine surfactant was instilled into the lung. In bolus group (n = 16) porcine surfactant (100 mg/kg) was administered as bolus. Respiratory outcomes and mortality were compared between groups. Results Duration of respiratory support was found to be similar between lavage and bolus groups (3 vs. 3.5 days, p = 0.36). Death or requirement for extracorporeal membrane oxygenation (ECMO) was 12% vs. 6%; respectively (RR: 2, 95% CI 0.16–24.48; p = 1.0). Duration of oxygen therapy, high-frequency ventilation or inhaled nitric oxide requirement did not differ among the groups. Conclusion Lung lavage did not show any advantage over bolus therapy on duration of respiratory support. The incidence of pneumothorax and surfactant re-administration decreased nonsignificantly in lavage group. Clinical Trial Registration We registered the trial to ClinicalTrials.gov (http://clinicaltrials.gov) under identifier NCT02041546. Registry name Lung Lavage With Dilute Poractant Alfa for Meconium Aspiration Syndrome.

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Chauhan, Vivek, Prakash C. Negi, Sujeet Raina, Sunil Raina, Mukul Bhatnagar, Rajesh Guleri, Vikrant Kanwar, and Kumar S. Pandey. "Smartphone-based tele-electrocardiography support for primary care physicians reduces the pain-to-treatment time in acute coronary syndrome." Journal of Telemedicine and Telecare 24, no. 8 (July 27, 2017): 540–46. http://dx.doi.org/10.1177/1357633x17719395.

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Background The Himachal Pradesh state acute coronary syndrome registry recorded a median delay of 13 h between the time of onset of pain to the time of making the diagnosis and giving treatment for acute coronary syndrome. We conducted a pilot study on providing 24-h tele-electrocardiography (Tele-ECG) services in the district Kangra of Himachal Pradesh, with the aim to reduce the time taken for diagnosis of acute coronary syndrome. Methods The intervention group for the study included eight rural community health centres, each with one to three primary care physicians, who were all unskilled in electrocardiogram interpretation. We provided them with 24-h Tele-ECG support. The primary care physicians used their smartphones to transmit the electrocardiogram image to the command centre, which was then read by the skilled specialist physicians in our medical college hospital and the report sent back within five minutes of having received the electrocardiogram. Antiplatelets were given by the primary care physician to patients diagnosed with acute coronary syndrome, who was then transported to the medical college hospital. The urban sub-divisional hospitals ( n = 6) formed the control group for the study. These hospitals had five to fifteen unskilled primary care physicians and one to two skilled specialist physicians; no intervention was done in this group. A pilot was run from February 2015–January 2016. Results We received 819 Tele-ECG consultations within the intervention group; 157 cases of acute coronary syndrome were confirmed and transferred to our medical college hospital facility. Similarly, we admitted 177 cases of acute coronary syndrome at the medical college hospital, who were first attended to by the primary care physician in the control group. Aspirin was administered to 91% and 58% of patients with acute coronary syndrome in the intervention and the control groups, respectively ( p < 0.0001). The median hospital-to-aspirin time (h) in the intervention and the control groups was 0.7 ± 1.45 h and 3.5 ± 10 h, respectively ( p < 0.0001). In the intervention group, 72% of the ST elevation myocardial infarction patients were diagnosed within 12 h by the primary care physician using Tele-ECG support. Interpretation and conclusions Smartphone-based Tele-ECG support for primary care physicians reduced the hospital-to-aspirin time in acute coronary syndrome significantly ( p < 0.0001). This is an effective low cost strategy and is easily replicable anywhere in the world.

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Sang, Xu, Zhen Zhang, Yumeng Wu, Wansheng Peng, and Xin Chen. "Noninvasive High-Frequency Shock Ventilation Based on Chest X-Ray Reconstruction Algorithm for Neonatal Respiratory Distress Syndrome." Scientific Programming 2021 (July 19, 2021): 1–7. http://dx.doi.org/10.1155/2021/4535136.

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Objective. To explore the use of the noninvasive high-frequency oscillatory ventilation and CPAP ventilation mode in the treatment of neonatal respiratory distress syndrome and to compare the treatment effect and the incidence of complications and whether it can reduce the time to go to the hospital and the number of hospital stays. Methods. Seventy-four children with RDS treated in hospital were selected and divided into the noninvasive high-frequency group (NHFV group, 36 children) and noninvasive positive pressure ventilation group (NCPAP group, 38 cases), and they were compared with the changes in arterial blood gas, the occurrence of complications, and the time on the machine before and after the operation on 12, 24, 48, and 72 hours. Results. In the NHFV group, PO2, a/APO2, and SaO2 were higher than those in the NCPAP group at 12, 24, 48, and 72 h after the respiratory support was given, and the differences were statistically significant (all P < 0.05 ). PaCO2 in the NHFV group was given respiratory support. After support, the results at 12, 24, 48, and 72 h were lower than those in the NCPAP group, and the difference was statistically significant (both P < 0.05 ). The children in both groups were cured and discharged from the hospital, with air leakage, persistent pulmonary hypertension, and bronchopulmonary dysplasia; there were no statistically significant differences in the incidence of complications such as retinopathy, pulmonary hemorrhage, and intracranial hemorrhage ( P > 0.05 ). The NHFV group had less tracheal intubation, operation time, and hospital stays than the NCPAP group. The differences were significant. Statistical significance was at P < 0.05 . Conclusion. Noninvasive high-frequency ventilation is effective in the treatment of RDS, and compared with the CPAP ventilation mode, it can reduce CO2 retention, increase the oxygenation index, and reduce time of operation and length of hospital stay in children with RDS. It is worthy of clinical promotion and application.

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Kornelyuk, R. A., D. L. Shukevich, I. E. Vereshchagin, and V. I. Ganyukov. "Organoprotective Eﬀects of Extracorporeal Membrane Oxygenation and Intra-Aortic Balloon Pump in High-Risk Percutaneous Coronary Intervention in Patients with Acute Coronary Syndrome." General Reanimatology 16, no. 1 (March 2, 2020): 16–26. http://dx.doi.org/10.15360/1813-9779-2020-1-16-26.

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Purpose of the study: to evaluate the organoprotective eﬀects of veno-arterial extracorporeal membrane oxygenation and intra-aortic balloon pump during high-risk percutaneous coronary intervention in acute coronary syndrome.Materials and methods. Patients required mechanical circulatory support (n=51) were divided into two study groups: patients who received mechanical circulatory support by veno-arterial extracorporeal membrane oxygenation (ECMO) (Group 1, n=29) during high-risk percutaneous coronary intervention, and Group 2 patients who received mechanical circulatory support by intra-aortic balloon pump (IABP) during high-risk percutaneous coronary intervention (Group 2, n=22). The dynamics of instrumental parameters and laboratory markers of organ damage were evaluated by electrocardiography, echocardiography, determining troponin I, creatine phosphokinases and creatinine levels, NGAL, venous blood saturation to compare the organoprotective properties of mechanical circulation support in the intra- and postoperative period.Results. The following values of the parameters were found the next day after the intervention: troponin I — 0.18 (0.1; 2.3) ng/ml in the ECMO group and 1.64 (0.92; 2.36) ng/ml in the IABP group (P=0.045); serum NGAL —139.4 (88.1; 166.7) ng/ml in the ECMO group and 212.3 (102; 279) in the IABP group (P=0.027); renal dysfunction (stages R, I, F according to RIFLE) — 2 (6.8%) observations in the ECMO group and 7 (31.8%) in the IABP group (P=0.021); multiple organ failure (2 or more points according to SOFA) — 3 (10.3%) cases in the ECMO group and 12 (54.5%) in the IABP group (P=0.001).Conclusion. Veno-arterial ECMO in comparison with IABP has a more pronounced organoprotective eﬀect by achieving better hemodynamic stability, which, in turn, prevents hypoxia and the subsequent development of organ dysfunction. In addition, in conditions of veno-arterial ECMO, better completeness and quality of revascularization is ensured, and hospital mortality is also reduced.

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Kim, Ju-Wan, Hee-Ju Kang, Kyung-Yeol Bae, Sung-Wan Kim, Il-Seon Shin, Jin-Sang Yoon, Young Joon Hong, Youngkeun Ahn, Myung Ho Jeong, and Jae-Min Kim. "Social support deficit and depression treatment outcomes in patients with acute coronary syndrome: Findings from the EsDEPACS study." International Journal of Psychiatry in Medicine 54, no. 1 (August 4, 2018): 39–52. http://dx.doi.org/10.1177/0091217418791439.

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Objectives This study aimed to investigate whether social support deficit has moderating effects on depressive and cardiac outcomes in an antidepressant trial for depressed patients with acute coronary syndrome as a secondary analysis using Escitalopram for DEPression in acute coronary syndrome study (ClinicalTrial.gov registry number: NCT00419471). Methods In total, 217 acute coronary syndrome patients with Diagnostic and Statistical Manual of Mental Disorders, 4th edition depressive disorders were randomized into two groups that received escitalopram (N = 108) or placebo (N = 109) for 24 weeks. Social support deficit was evaluated by validated scales at study entry. Depressive outcomes were measured using the Hamilton Depression Rating Scale, the Montgomery Asberg Depression Rating Scale, and the Beck Depression Inventory. Cardiac outcomes included echocardiography (left ventricular ejection fraction and wall motion scores), electrocardiography (heart rate, PR interval, QRS duration, and QTc duration), and laboratory test results (troponin I and creatine kinase-MB). Results A higher social support deficit at baseline was significantly associated with less improvement in Hamilton Depression Rating Scale, Montgomery Asberg Depression Rating Scale, Beck Depression Inventory scores, and serum troponin I levels after adjustment for corresponding baseline scores, covariates associated with social support deficit at baseline, and treatment status. The strength of these associations was more prominent in the placebo group compared to the escitalopram group. Conclusions Evaluation of social support deficit in depressed acute coronary syndrome is important, and particularly during the acute phase, depressed acute coronary syndrome patients with social support deficit should be treated more carefully to improve treatment outcomes, given that social support deficit was predictive of poorer depressive and cardiac outcomes during the 24-week treatment period. Acute coronary syndrome patients with social support deficit should be treated more carefully to improve treatment outcomes.

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Beltrán, Carolina Aranda, Manuel Pando Moreno, José G. Salazar Estrada, Teresa M. Torres López, and María Guadalupe Aldrete Rodríguez. "Social Support, Burnout Syndrome and Occupational Exhaustion among Mexican Traffic Police Agents." Spanish journal of psychology 12, no. 2 (November 2009): 585–92. http://dx.doi.org/10.1017/s1138741600001955.

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The consequences of work-related stress on health are worrisome, and by the same token, so is Burnout Syndrome. However, it has been shown that social support can prevent, reduce or even combat individuals' responses to stress.A descriptive, transverse study was carried out with the objective of determining the prevalence of both Burnout Syndrome and receiving social support for traffic police in Mexico. 875 traffic police participated in the study, men and women alike, from all work shifts, day and night. Three questionnaires were administered: one to record sociodemographic and professional data, as well as the Maslach Burnout Inventory and the modified Diaz Veiga Social Resources Inventory. Our data analysis obtained frequencies and percentages and also identified associations between the study's variables.The prevalence of Burnout Syndrome was found to be 54.9% among the study's participants. The social support networks designated as “low or poor” were shown to be associated with Burnout Syndrome, with p values less than .05, an odds ratio (OR) greater than 1 and a confidence interval that did not include the number one.In spite of the strong network of social support reported by participants, it seems that those social effects were not strong enough to combat Burnout Syndrome, and some resolution strategy ought to be implemented at the individual, group and organizational levels.

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Autschbach, Teresa, Nima Hatam, Koray Durak, Oliver Grottke, Michael Dreher, Katharina Nubbemeyer, Rolf Rossaint, et al. "Outcomes of Extracorporeal Membrane Oxygenation for Acute Respiratory Distress Syndrome in COVID-19 Patients: A Propensity-Matched Analysis." Journal of Clinical Medicine 10, no. 12 (June 9, 2021): 2547. http://dx.doi.org/10.3390/jcm10122547.

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It remains unclear to what extent the outcomes and complications of extracorporeal membrane oxygenation (ECMO) therapy in COVID-19 patients with acute respiratory distress syndrome (ARDS) differ from non-COVID-19 ARDS patients. In an observational, propensity-matched study, outcomes after ECMO support were compared between 19 COVID-19 patients suffering from ARDS (COVID group) and 34 matched non-COVID-19 ARDS patients (NCOVID group) from our historical cohort. A 1:2 propensity matching was performed based on respiratory ECMO survival prediction (RESP) score, age, gender, bilirubin, and creatinine levels. Patients’ characteristics, laboratory parameters, adverse events, and 90-day survival were analyzed. Patients’ characteristics in COVID and NCOVID groups were similar. Before ECMO initiation, fibrinogen levels were significantly higher in the COVID group (median: 493 vs. 364 mg/dL, p < 0.001). Median ECMO support duration was similar (16 vs. 13 days, p = 0.714, respectively). During ECMO therapy, patients in the COVID group developed significantly more thromboembolic events (TEE) than did those in the NCOVID group (42% vs. 12%, p = 0.031), which were mainly pulmonary artery embolism (PAE) (26% vs. 0%, p = 0.008). The rate of major bleeding events (42% vs. 62%, p = 0.263) was similar. Fibrinogen decreased significantly more in the COVID group than in the NCOVID group (p < 0.001), whereas D-dimer increased in the COVID group (p = 0.011). Additionally, 90-day mortality did not differ (47% vs. 74%; p = 0.064) between COVID and NCOVID groups. Compared with that in non-COVID-19 ARDS patients, ECMO support in COVID-19 patients was associated with comparable in-hospital mortality and similar bleeding rates but a higher incidence of TEE, especially PAE. In contrast, coagulation parameters differed between COVID and NCOVID patients.

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Garrett, Cameryn C., and Maggie Kirkman. "Being an XY Female: An Analysis of Accounts From the Website of the Androgen Insensitivity Syndrome Support Group." Health Care for Women International 30, no. 5 (April 27, 2009): 428–46. http://dx.doi.org/10.1080/07399330902785380.

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Chevalère, Johann, Virginie Postal, Joseba Jauregui, Pierre Copet, Virginie Laurier, and Denise Thuilleaux. "Executive Functions and Prader-Willi Syndrome: Global Deficit Linked With Intellectual Level and Syndrome-Specific Associations." American Journal on Intellectual and Developmental Disabilities 120, no. 3 (May 1, 2015): 215–29. http://dx.doi.org/10.1352/1944-7558-120.3.215.

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Abstract The aim of this study was to support the growing evidence suggesting that Prader-Willi Syndrome (PWS) might present with an impairment of executive functions (EFs) and to investigate whether this impairment is specific to patients with PWS or due to their intellectual disability (ID). Six tasks were administered to assess EFs (inhibition, switching, updating, cognitive estimation, and planning) to 17 patients with PWS and 17 age-matched healthy individuals. Performance was significantly impaired in the PWS group on all EFs and after controlling for IQ level, intergroup differences remained only for switching and cognitive estimation. In conclusion, PWS seems to be associated with a global impairment of EFs that appears to be closely linked with intellectual impairment but also with the PWS itself.

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Banerjee, Indrajeet, Debasree Bora, and Sonia P. Deuri. "Coping Strategies and Perceived Social Support in Wives of Persons with Alcohol Dependence Syndrome." Indian Journal of Psychiatric Social Work 8, no. 1 (February 13, 2017): 28. http://dx.doi.org/10.29120/ijpsw.2017.v8.i1.12.

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Background: In India alcohol is the most commonly used substance of abuse. The effect of alcoholism in husbandsmostly leads to disturbances in marital life.These effects may directly or indirectly drain out caregivers of substanceabusers. One of the most affected among caregivers is the marital partners. In other words it is the wives of substanceabusing husband who are the victims. Coping mechanisms are used by the wives to handle the stressful situation hasa vital role in reducing psychological difficulties. In case of wives with alcohol dependent husbands, the socialsupport is a buffer for crisis periods. Aim of the study: The study is aimed to enquire the coping strategies andperceived social support of the wives of persons with alcohol dependence syndrome. Material and methods: A total30 wives of persons with alcohol dependence syndrome according to ICD-10 were taken as the sample usingpurposive sample collection. Socio-demographic profile was assessed through semi-structured questionnaire whilecoping strategies was assessed through Ways of Coping Scale (1986) and the Multidimensional Scale of PerceivedSocial Support (1988) was applied to assess the perceived social support after taking their informed consent. Dataanalysis was done using SPSS for descriptive statistics. Results: The result shows that varied types of coping strategieswere used by wives of persons with alcohol dependence. In contrast the previous studies suggest use of emotionalfocused or escape avoidance coping. This study suggests that adaptive copings such as positive reappraisal, seekingsocial support and problem solving were used in comparison to escape avoidance. In contrast to previous studiesperceived social support was found to be high in this study group. Conclusion: It is well known fact that copingstrategies plays a major role in dealing with stressful life situations and perceived social support also have positiveimpact over health. Finding from this study suggests that any psychosocial intervention designed for this group mustconsider these facts and findings. Eventually these findings from the study can be used to help in enhancing thewellbeing of wives of alcohol dependents.Keywords: Alcohol dependence, coping strategies, perceived social support

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Al-Fares, Abdulrahman, Eddy Fan, Shahid Husain, Matteo Di Nardo, Marcelo Cypel, Shaf Keshavjee, Margaret S. Herridge, and Lorenzo Del Sorbo. "Veno-venous extracorporeal life support for blastomycosis-associated acute respiratory distress syndrome." Perfusion 34, no. 8 (April 26, 2019): 660–70. http://dx.doi.org/10.1177/0267659119844391.

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Background: Blastomyces is a dimorphic fungus endemic to regions of North America, which can lead to pneumonia and fatal severe acute respiratory diseases syndrome in up to 89% of patients. Extracorporeal life support can provide adequate oxygenation while allowing the lungs to rest and heal, which might be an ideal therapy in this patient group, although long-term clinical and radiological outcomes are not known. Clinical features: We report on five consecutive patients admitted to Toronto General Hospital intensive care unit between January 2012 and September 2016, with progressive respiratory failure requiring veno-venous extracorporeal life support within 24-96 hours following mechanical ventilation. Ultra-lung protective mechanical ventilation was achieved within 24 hours. Recovery was the initial goal in all patients. Extracorporeal life support was provided for a prolonged period (up to 49 days), and four patients were successfully discharged from the intensive care unit. Long-term radiological assessment in three patients showed major improvement within 2 years of follow-up with some persistent disease-related changes (bronchiectasis, fibrosis, and cystic changes). In two patients, long-term functional and neuropsychological outcomes showed similar limitations to what is seen in acute respiratory distress syndrome patients who are not supported with extracorporeal life support and in acute respiratory distress syndrome patients without blastomycosis, but worse pulmonary function outcomes in the form of obstructive and restrictive changes that correlated with the radiological imaging. Conclusion: Veno-venous extracorporeal life support can effectively provide prolonged support for patients with blastomycosis-associated acute respiratory distress syndrome that is safe and associated with favorable long-term outcomes.

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Journal articles on the topic 'Stickler Syndrome Support Group'

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