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Introduction: Scleroderma is a rare autoimmune connective tissue disease. It has a substantial negative impact on quality of life and causes numerous painful and limitative symptoms. Like other chronic diseases, partners often become caregivers. Many studies on other chronic illnesses demonstrated that caregivers show signs of depression and anxiety. However, this observation is yet to be better explored with systemic sclerosis. Objectives: Verify if social support and illness severity impact the relation between caregivers' perceived burden and their depression and anxiety symptoms. Methods: 51 couples from the Quebec province in Canada were recruited (102 participants). All participants were a) 18 years or older, b) in a relationship and cohabiting for over a year, c) one of the two partners had received the diagnosis of systemic sclerosis and d) was followed regularly by a rheumatologist. Patients and their partner filled a set of standardized questionnaires frequently used in scleroderma research (details in the poster). Moderator analyses were completed to explore the moderating effect of social support and illness severity on the relation between the caregivers' perceived burden and their depression and anxiety symptoms Results: Illness severity (physical and mental) plays a moderating role on the relation between the caregivers' perceived burden and their depression and anxiety symptoms, p<.01 (detailed results in the poster). Social support played a moderating role on the relation between the caregiver's perceived burden and their anxiety symptoms, (ΔR2 = .12, F(1,37) = 5.25, p = .028). Conclusions: Caregivers' psychological health must be assessed to offer appropriate social and psychological support. [ABSTRACT FROM AUTHOR]

Purpose: Explore trial participants' and research team members' perceptions of the impact of the videoconference-based, supportive care program (SPIN-CHAT Program) during early COVID-19 for individuals with systemic sclerosis (SSc)., Methods: Data were collected cross-sectionally. A social constructivist paradigm was adopted, and one-on-one videoconference-based, semi-structured interviews were conducted with SPIN-CHAT Trial participants and research team members. A hybrid inductive-deductive approach and reflexive thematic analysis were used., Results: Of the 40 SPIN-CHAT Trial participants and 28 research team members approached, 30 trial participants (Mean age = 54.9; SD = 13.0 years) and 22 research team members agreed to participate. Those who took part in interviews had similar characteristics to those who declined. Five themes were identified: (1) The SPIN-CHAT Program conferred a range of positive psychological health outcomes, (2) People who don't have SSc don't get it: The importance of SSc-specific programming, (3) The group-based format of the SPIN-CHAT Program created a safe space to connect and meet similar others, (4) The structure and schedule of the SPIN-CHAT Program reduced feelings of boredom and contributed to enhanced psychological health, (5) The necessity of knowledge, skills, and tools to self-manage SSc and navigate COVID-19., Conclusion: Participants' and research team members' perspectives elucidated SPIN-CHAT Program benefits and how these benefits may have been realized. Results underscore the importance of social support from similar others, structure, and self-management to enhance psychological health during COVID-19., Trial Registration: clinicaltrials.gov (NCT04335279)IMPLICATIONS FOR REHABILITATIONThe videoconference-based, supportive care SPIN-CHAT Program enhanced psychological health amongst individuals affected by systemic sclerosis.SPIN-CHAT Program participants and research team members shared that being around similar others, program structure, and self-management support were important and may have contributed to enhanced psychological health.Further efforts are required to explore experiences within supportive care programs to better understand if and how psychological health is impacted.

The SPIN-CHAT Program was designed to support mental health among individuals with systemic sclerosis (SSc; commonly known as scleroderma) and at least mild anxiety symptoms at the onset of COVID-19. The program was formally evaluated in the SPIN-CHAT Trial. Little is known about program and trial acceptability, and factors impacting implementation from the perspectives of research team members and trial participants. Thus, the propose of this follow-up study was to explore research team members' and trial participants' experiences with the program and trial to identify factors impacting acceptability and successful implementation. Data were collected cross-sectionally through one-on-one, videoconference-based, semi-structured interviews with 22 research team members and 30 purposefully recruited trial participants (Mage = 54.9, SD = 13.0 years). A social constructivist paradigm was adopted, and data were analyzed thematically. Data were organized into seven themes: (i) getting started: the importance of prolonged engagement and exceeding expectations; (ii) designing the program and trial: including multiple features; (iii) training: research team members are critical to positive program and trial experiences; (iv) offering the program and trial: it needs to be flexible and patient-oriented; (v) maximizing engagement: navigating and managing group dynamics; (vi) delivering a videoconference-based supportive care intervention: necessary, appreciated, and associated with some barriers; and (vii) refining the program and trial: considering modification when offered beyond the period of COVID-19 restrictions. Trial participants were satisfied with and found the SPIN-CHAT Program and Trial to be acceptable. Results offer implementation data that can guide the design, development, and refinement of other supportive care programs seeking to promote psychological health during and beyond COVID-19., (© The Author(s) 2023. Published by Oxford University Press on behalf of the Society of Behavioral Medicine.)

Objective: The PTSD Checklist for DSM (PCL) is the most widely used screener to assess posttraumatic stress disorder (PTSD) in those with psychotic disorders (psychosis), though previous research has questioned its validity in psychosis. Considerable symptom overlap between the 2 disorders (e.g., concentration difficulties, avoidance, etc.) along with the general underdiagnosing of PTSD in psychosis speaks to the need for consensus regarding brief screeners. This hypothesis-generating study is the first to explore the PCL-5 (its most recent iteration) factor structure in psychosis to assess if a more valid underlying structure may exist., Method: Sixty-5 individuals who met the DSM - 5 PTSD criterion A traumatic event following an interview subsequently completed the PCL-5. Exploratory factor analysis was conducted to explore the latent structure of the PCL-5 in psychotic disorders., Results: A 4-factor solution differing from the DSM - 5 4-factor model emerged as the best fitting model. Resulting PCL-5 dimensions in psychosis were identified as (1) Reexperiencing/Negative Affect; (2) Depressive; (3) Externalizing Anxious Behaviors; and (4) Avoidance/Physiological Reactivity., Conclusions: Results guide the hypothesis that the latent structure of the PCL-5 may be unique in psychosis, which will have important clinical implications. Research is now needed to confirm the proposed model in larger samples of individuals with psychosis. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Background: More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively by researchers, peer support group leaders, and patient organization leaders, compared to waitlist control, on peer leader self-efficacy among scleroderma support group leaders., Methods: The trial was a pragmatic, two-arm partially nested randomised controlled trial with 1:1 allocation into intervention or waitlist control. Eligible participants were existing or candidate peer support group leaders affiliated with a scleroderma patient organization. Leader training was delivered in groups of 5-6 participants weekly for 13 weeks in 60-90 min sessions via the GoToMeeting® videoconferencing platform. The program included 12 general leader training modules and one module specific to scleroderma. Primary outcome was leader self-efficacy, measured by the Support Group Leader Self-efficacy Scale (SGLSS) immediately post-intervention. Secondary outcomes were leader self-efficacy 3 months post-intervention; emotional distress, leader burnout, and volunteer satisfaction post-intervention and 3 months post-intervention; and program satisfaction among intervention participants post-intervention., Results: One hundred forty-eight participants were randomised to intervention (N = 74) or waitlist (N = 74). Primary outcome data were provided by 146 (99%) participants. Mean number of sessions attended was 11.4 (standard deviation = 2.6). Mean program satisfaction score (CSQ-8) was 30.3 (standard deviation = 3.0; possible range 8-32). Compared to waitlist control, leader self-efficacy was higher post-intervention [SGLSS; 16.7 points, 95% CI 11.0-22.3; standardized mean difference (SMD) 0.84] and 3 months later (15.6 points, 95% CI 10.2-21.0; SMD 0.73); leader volunteer satisfaction was significantly higher at both assessments, emotional distress was lower post-intervention but not 3 months later, and leader burnout was not significantly different at either assessment., Conclusions: Peer support group leader education improved leader self-efficacy substantially. The program could be easily adapted for support group leaders in other rare diseases., Trial Registration: NCT03965780 ; registered on May 29, 2019., (© 2022. The Author(s).)

Objective: Posttraumatic stress disorder (PTSD) has been shown to significantly impair quality of life (QOL), although no meta-analysis has evaluated the effect of psychotherapies for PTSD on QOL in the civilian population. The current meta-analysis aimed to assess these effects in the adult civilian population. Method: An exhaustive search of 13 databases revealed 9 studies of moderate to strong methodological quality evaluating mainly cognitive-behavioral therapy (8 of 9 studies). A total of 421 participants were allocated to a psychotherapy condition, 174 to a waitlist control group, and 203 were allocated to an active control group. Waitlist and active-controlled random effects of psychotherapies on QOL were computed. Risk of bias was assessed using multiple indices. Results: Pre-post treatment pooled effect sizes were small to moderate for QOL (active-controlled: Hedges' g = 0.37, 95% confidence interval [CI;0.14, 0.59]; waitlist-controlled: g = 0.63, CI [0.44, 0.83]) and were both large (waitlist-controlled: g = -1.36, CI [-1.85, -0.88]) and small (active-controlled: g = -0.40, CI [-0.57, -0.23]) for PTSD. Risk of bias analyses support robust and conservative results. Conclusions: The results, mainly with respect to cognitive-behavioral therapy, suggest that psychotherapies for PTSD improve QOL. More research is required to determine whether improvements are adequate in restoring QOL to a clinically acceptable level. Future studies should evaluate the effects of psychotherapies on the different dimensions of QOL as well as the specific effects of additional QOL-focused interventions. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Background: No trials have tested multifaceted mental health interventions recommended by public health organisations during COVID-19. The objective of this trial was to evaluate the effect of the Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Program on anxiety symptoms and other mental health outcomes among people vulnerable during COVID-19 owing to a pre-existing medical condition., Methods: The SPIN-CHAT Trial was a pragmatic, two-arm, parallel, partially nested, randomised, controlled trial (1:1 allocation to intervention or waitlist). Eligible participants with systemic sclerosis were recruited from the international SPIN COVID-19 Cohort. SPIN COVID-19 Cohort participants were eligible for the trial if they completed baseline measures and had at least mild anxiety symptoms, had not tested positive for COVID-19, and were not currently receiving mental health counselling. SPIN-CHAT is a 4-week (3 sessions per week) videoconference-based group intervention that provided education and practice with mental health coping strategies, and provided social support to reduce isolation. Groups included 6-10 participants. The primary outcome analysed in the intention-to-treat population was anxiety symptoms (PROMIS Anxiety 4a version 1.0) immediately post-intervention. This trial is registered with ClinicalTrials.gov, NCT04335279 and is complete., Findings: Of participants who completed baseline measures between April 9, 2020, and April 27, 2020, 560 participants were eligible and 172 participants were randomly assigned to intervention (n=86) or waitlist (n=86). Mean age was 55·0 years (SD 11·4 years), 162 (94%) were women, and 136 (79%) identified as White. In intention-to-treat analyses, the intervention did not significantly reduce anxiety symptoms post-intervention (-1·57 points, 95% CI -3·59 to 0·45; standardised mean difference [SMD] -0·22 points) but reduced symptoms 6 weeks later (-2·36 points, 95% CI -4·56 to -0·16; SMD -0·31). Depression symptoms were significantly lower 6 weeks post-intervention (-1·64 points, 95% CI -2·91 to -0·37; SMD -0·31); no other secondary outcomes were significant. No adverse events were reported., Interpretation: The intervention did not significantly improve anxiety symptoms or other mental health outcomes post-intervention. However, anxiety and depression symptoms were significantly lower 6 weeks later, potentially capturing the time it took for new skills and social support between intervention participants to affect mental health. Multi-faceted interventions such as SPIN-CHAT have potential to address mental health needs in vulnerable groups during COVID-19, yet uncertainty remains about effectiveness., Funding: Canadian Institutes of Health Research (CIHR; VR4-172745, MS1-173066); McGill Interdisciplinary Initiative in Infection and Immunity Emergency COVID-19 Research Fund; Scleroderma Canada, made possible by an educational grant for patient support programming from Boehringer Ingelheim; the Scleroderma Society of Ontario; Scleroderma Manitoba; Scleroderma Atlantic; Scleroderma Australia; Scleroderma New South Wales; Scleroderma Victoria; Scleroderma Queensland; Scleroderma SASK; the Scleroderma Association of BC; and Sclérodermie Québec., Competing Interests: All authors have completed the ICMJE uniform disclosure form. LM reported personal fees from Actelion–Johnson & Johnson, grants from LFB, non-financial support from Octapharma, and non-financial support from Grifols, all outside the submitted work. All other authors declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years. All authors declare no other relationships or activities that could appear to have influenced the submitted work., (© 2021 Elsevier Ltd. All rights reserved.)

Purpose: Many people with scleroderma rely on peer-led support groups as a coping resource. Reasons for not attending support groups in scleroderma have been investigated only in North American participants. This study assesses reasons for nonattendance in European countries and compares results with previously published North American findings., Materials and Methods: The same 21-item survey as used in the North American sample assessed possible reasons for not attending scleroderma support groups. Proportions of items rated Important or Very Important were compared between samples., Results: Consistent with the North American survey findings ( N  = 242), the two items most commonly rated as (Very) Important reasons for nonattendance among 228 European participants were (1) already having enough support (57%), and (2) not knowing of any local scleroderma support groups (58%). Compared to North American non-attenders, European patients were significantly more likely to rate not knowing enough about what happens at support groups (46% vs 19%), not having reliable ways to get to meetings (35% vs 17%), and being uncomfortable sharing experiences with a group (22% vs 11%) as (Very) Important reasons for nonattendance., Conclusions: Improving access to European support groups, providing education about support groups and group leader training may encourage participation.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals might help develop local support groups for people with systemic sclerosis (scleroderma) to address the lack of access to these groups for many patients.The need for transportation and limited local accessibility may also be addressed by implementing online systemic sclerosis support groups.Professionals in the field of rehabilitation may work with people with systemic sclerosis and patient organizations to provide education about support groups to improve support group attendance in Europe.

Objectives: The Scleroderma Patient-centered Intervention Network-Scleroderma Support group Leader EDucation (SPIN-SSLED) Programme was designed to improve confidence and self-efficacy and to reduce burden for support group leaders. Objectives were to (1) evaluate feasibility of programme delivery, including required resources, management issues and scientific aspects (eg, performance of outcome measures) and (2) assess user satisfaction and identify any modifications needed to improve programme content or delivery based on participant feedback., Design: Non-randomised feasibility trial., Setting: North American patient organisations., Participants: Current support group leaders or potential new leaders referred by patient organisations., Intervention: The programme included 13 modules delivered live via videoconference over 3 months (April to July 2018) in 60 to 90 min sessions., Outcome Measures: (1) Elements of feasibility, including enrolment and consent procedures, percentage of referred group leaders who consented to participate, session attendance and technical support requirements; (2) programme usability, understandability, organisation and clarity; (3) leader satisfaction with the programme and (4) planned trial outcome measures, including support group leader self-efficacy, burnout, emotional distress and physical function., Results: All 12 referred potential participants consented to enrol, and 10 were included in two training groups of five participants each. Participants attended 95% of sessions. Required technical support was minimal, and videoconferencing technology functioned well. Overall programme satisfaction rating was 9.4/10. Mean item rating on the eight items of the Client Satisfaction Questionnaire-8 was 3.83 (1=low satisfaction; 4=high satisfaction). Pre-post scores on the Scleroderma Support Group Leader Self-efficacy Scale increased by 1.7 SDs (large effect); scores on burnout, emotional distress and physical function improved by 0.44, 0.38 and 0.45 SDs (moderate effects)., Conclusion: The SPIN-SSLED Programme was feasibly delivered, including management, resource and scientific aspects. Participant satisfaction was high. The programme is ready to be tested in a full-scale randomised controlled trial., Trial Registration Number: NCT03508661., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: Peer-facilitated support groups are an important resource for people with scleroderma, but little is known about challenges faced by support group facilitators. The objective was to identify training and support needs of scleroderma support group facilitators to inform the development of an educational training program. Methods: A 32-item survey assessed confidence of support group facilitators to execute tasks necessary for successfully facilitating support groups. Survey items were grouped into seven themes using content analysis. Results: Eighty North American scleroderma support group facilitators completed the survey. Facilitators were generally confident in their ability to complete tasks related to: (1) Organizing, Structuring, and Facilitating the group; (2) Addressing Individual Member Needs and Diversity of the Group; (3) Helping Members Cope with Grief and Loss; and (4) Attaining and Responding to Member Feedback. They were less confident in their ability to perform tasks related to (1) Managing Difficult Group Dynamics; (2) Promoting and Sustaining the Group; and (3) Balancing Personal and Group Needs. Conclusion: Results suggest that a training program for scleroderma support group facilitators should address a broad range of topics, including managing difficult group interactions, promotion and maintaining the group, and balancing personal and support group needs. Implications for Rehabilitation Many patients with the rare autoimmune connective tissue disease scleroderma depend on peer-facilitated support groups for disease-related education and peer support, but the lack of training for facilitators is a barrier to forming and sustaining groups. Rehabilitation professionals can support the formation and management of local support groups by providing education and support to peer group facilitators or by referring them to national scleroderma organizations who are developing training resources. Training for support group facilitators should focus on areas where facilitators were least confident in their abilities, including managing difficult group dynamics, promoting and sustaining the group, and balancing personal and group needs.

Peer-facilitated support groups are an important source for receiving disease-related information and support for people with systemic sclerosis (or scleroderma). A recent survey explored reasons for attending systemic sclerosis support groups in Europe and Australia and used exploratory factor analysis to group reasons for attendance into three main themes: (1) interpersonal and social support, (2) disease treatment and symptom management strategies, and (3) other aspects of living with systemic sclerosis. The objective of the present study was to replicate this study in a sample of patients from North America using confirmatory factor analysis. A 30-item survey was used to assess reasons for attendance and organizational preferences among systemic sclerosis patients in Canada and the United States. In total, 171 members completed the survey. In the confirmatory factor analysis, the three-factor model showed good fit to the data (χ 2 (399) = 646.0, p < 0.001, Tucker-Lewis index = 0.97, comparative fit index = 0.97, root mean square error approximation = 0.06). On average, respondents rated 22 (73%) of 30 items as "important" or "very important" reasons for attending support groups. Among organizational preferences, respondents emphasized the importance of the ability to share feelings and concerns, as well as educational aspects. Findings of our study suggest that reasons for attending support groups are similar for patients from Europe, Australia, and North America and that support groups should facilitate social support as well as disease education. These results inform the development of training programs for current and future systemic sclerosis support group leaders across the globe., Competing Interests: Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2019.)

Purpose: The objectives were to identify reasons why patients attend scleroderma support groups and to ascertain preferences for how meetings are best organized., Methods: The survey included 30-items on reasons for attending and nine items on organizational preferences. Patients were recruited through European patient organizations. Exploratory factor analysis was used to group reasons for attendance thematically., Results: About 213 scleroderma patients (192 women) completed the survey. A three-factor model best described reasons for attending [χ 2 (348) = 586.1, p < 0.001; Comparative Fit Index = 0.98; Tucker Lewis Index = 0.97; Root Mean Square Error of Approximation = 0.06] with themes that included: (1) obtaining interpersonal and social support, (2) learning about treatment and symptom management strategies, and (3) discussing other aspects of scleroderma. Among organizational preferences, respondents emphasized that meetings should include educational aspects and the opportunity to share information and support., Conclusion: People with scleroderma attend support groups to give and obtain social support and for education about managing their disease and other aspects of living with scleroderma. Support groups should be structured to facilitate both educational and informational aspects and to provide opportunities for sharing and support between members. Implications for rehabilitation Local peer-led support groups are an important support and informational resource for patients living with scleroderma. People with scleroderma attend support groups in order to: (1) obtain interpersonal and social support, (2) learn about disease treatment and symptom management strategies, and (3) discuss other aspects of living with scleroderma outside of symptom management. Most support group members prefer groups with a trained facilitator, that include family members or loved ones in the groups, that include between 11and 20 members, that last between 1 and 2 h, and that meet once every 1-3 months. Rehabilitation professionals can support the formation and management of local support groups or can refer patients to national scleroderma patient organizations for information on support groups that they may be able to access.

Background: Evidence from clinical trials suggests psychological interventions should be considered as an adjunct to medications., Objective: The purpose of this systematic review and meta-analysis was to evaluate the effectiveness of clinical hypnosis on pain, anxiety and medication needs during wound care in adults suffering from a burn injury., Data Sources: Medline, PsychINFO, CINAHL, Embase, ISI, SCOPUS, Cochrane, and Proquest databases were searched for randomized controlled trials comparing hypnosis to other interventions during dressing change in adult patients., Data Synthesis: Two independent reviewers extracted relevant articles and assessed their methodological quality. Only six studies met the inclusion criteria and were described in detail. Available data was pooled with Revman 5.3., Results: For the primary outcome, we found a statistically significant difference in pain intensity ratings favoring hypnosis (MD=-8.90, 95% CI -16.28, -1.52). For the secondary outcomes, there was a statistically significant difference in anxiety ratings favoring hypnosis (MD=-21.78, 95% CI -35.64, -7.93) and no difference in medication usage (MD=-0.07, 95% CI -0.32, 0.17)., Conclusion: These results suggest that hypnosis reduces pain intensity and anxiety ratings in adults undergoing burn wound care. However, because of the limitations discussed, clinical recommendations are still premature., (Copyright © 2018 Elsevier Ltd and ISBI. All rights reserved.)

Purpose: Systemic sclerosis or scleroderma is a chronic, rare connective tissue disease with negative physical and psychological implications. Coping strategies used by scleroderma patients have not been studied in-depth. The objective of the present study was to gain a greater understanding of the coping strategies employed by people living with scleroderma., Method: Three semi-structured focus group discussions were conducted with a total of 22 people with scleroderma. Interviews were recorded, transcribed, and analyzed using content analysis. Coping strategies discussed were analyzed through Lazarus and Folkman's theoretical model of coping, including: (1) problem-focused, (2) emotion-focused, and (3) meaning-focused coping., Results: Participants reported using a combination of problem-focused (e.g., professional help; seeking disease-related information), emotion-focused (e.g., social support; adaptive distraction techniques), and meaning-focused coping strategies (e.g., benefit finding; goal reappraisal) to help them to cope with and manage their disease. However, many patients reported having difficulty in accessing support services., Conclusions: Scleroderma patients use similar coping strategies as patients with more common diseases, but they may not have access to the same level of support services. Accessible interventions, including self-management programs, aimed at improving problem- and emotion-focused coping are needed. Further, increased access to support groups may provide patients with opportunities to obtain social support and enhance coping.

This letter comments on the conclusion drawn by Shirotsuki et al. (2017) in their article entitled "The effect for Japanese workers of a self-help computerized cognitive behaviour therapy program with a supplement soft drink", recently published in BioPsychoSocial Medicine . The authors concluded that their drink, containing L-carnosine, enhances the effects of a computerized cognitive-behavioural therapy (CCBT) on the psychological well-being of healthy Japanese workers. Yet, we argue that their conclusion is unfounded given their results and the methodological shortcomings of their study. Briefly, while the authors reported improvement on the tension-anxiety subscale of the Profile of Mood States (POMS) in the CCBT only group, they also observed a lack of improvement on this subscale in the CCBT+L-carnosine group suggesting that the drink washes out this beneficial effect of CCBT. Methodological issues include the uncontrolled levels of L-carnosine metabolized by participants jeopardize the study's internal validity. Also, the clinical meaningfulness of the findings seems dubious as post-treatment scores remained within the range of the general Japanese population. Consequently, we argue that Shirotsuki et al.'s study should be re-conducted before drawing any valid conclusion., Competing Interests: Non-applicable.Non-applicable.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Panic disorder with or without agoraphobia (PD/A) and obsessive-compulsive disorder (OCD) are characterized by major behavioral dysruptions that may affect patients' social and marital functioning. The disorders' impact on interpersonal relationships may also affect the quality of support patients receive from their social network. The main goal of this systematic review is to determine the association between social or marital support and symptom severity among adults with PD/A or OCD. A systematic search of databases was executed and provided 35 eligible articles. Results from OCD studies indicated a negative association between marital adjustment and symptom severity, and a positive association between accommodation from relatives and symptom severity. However, results were inconclusive for negative forms of social support (e.g. criticism, hostility). Results from PD/A studies indicated a negative association between perceived social support and symptom severity. Also, results from studies using an observational measure of marital adjustment indicated a negative association between quality of support from the spouse and PD/A severity. However, results were inconclusive for perceived marital adjustment and symptom severity. In conclusion, this systematic review generally suggests a major role of social and marital support in PD/A and OCD symptomatology. However, given diversity of results and methods used in studies, more are needed to clarify the links between support and symptom severity among patients with PD/A and OCD., Competing Interests: The authors have declared that no competing interests exist.

Support groups are an important resource for people living with systemic sclerosis (SSc; scleroderma). Peer support group leaders play an important role in the success and sustainability of SSc support groups, but face challenges that include a lack of formal training. An SSc support group leader training program could improve leader self-efficacy to carry out important leadership tasks, including the management of group dynamics. However, no measures exist to assess self-efficacy among SSc support group leaders. The objective of this study was to develop and provide preliminary evidence on the reliability and validity of the Scleroderma Support Group Leader Self-efficacy Scale (SSGLSS). The SSGLSS was administered to two sets of SSc support group leaders from North America, Europe, and Australia. Study 1 participants (n = 102) completed the SSGLSS only. Study 2 participants (n = 55) completed the SSGLSS and the Oldenburg Burnout Inventory (OLBI). For both studies, we evaluated internal consistency reliability using Cronbach's coefficient alpha. Convergent validity was assessed in Study 2 using Pearson correlations of the SSGLSS with the OLBI exhaustion and disengagement subscales. Cronbach's alpha was 0.96 in Study 1 and 0.95 in Study 2. Consistent with our hypotheses, there was a small negative correlation between SSGLSS scores and the OLBI exhaustion subscale (r = -0.25, p<0.01) and a moderate negative correlation between SSGLSS scores and the disengagement subscale (r = -0.38, p<0.01). These results suggest that the SSGLSS is a reliable and valid measure of self-efficacy for carrying out support group leadership tasks., Competing Interests: Disclosures: Financial support: The research was supported by the Scleroderma Society of Ontario and the Canadian Initiative for Outcomes in Rheumatology Care. Conflict of interest: None of the authors has financial interest related to this study to disclose., (© The Author(s) 2017.)

Objective: Peer-led support groups are an important resource for many people with scleroderma (systemic sclerosis; SSc). Little is known, however, about barriers to participation. The objective of this study was to identify reasons why some people with SSc do not participate in SSc support groups., Methods: A 21-item survey was used to assess reasons for nonattendance among SSc patients in Canada and the US. Exploratory factor analysis (EFA) was conducted, using the software MPlus 7, to group reasons for nonattendance into themes., Results: A total of 242 people (202 women) with SSc completed the survey. EFA results indicated that a 3-factor model best described the data (χ 2 [150] = 302.7; P < 0.001; Comparative Fit Index = 0.91, Tucker-Lewis Index = 0.88, root mean square error of approximation = 0.07, factor intercorrelations 0.02-0.43). The 3 identified themes, reflecting reasons for not attending SSc support groups were personal reasons (9 items; e.g., already having enough support), practical reasons (7 items; e.g., no local support groups available), and beliefs about support groups (5 items; e.g., support groups are too negative). On average, respondents rated 4.9 items as important or very important reasons for nonattendance. The 2 items most commonly rated as important or very important were 1) already having enough support from family, friends, or others, and 2) not knowing of any SSc support groups offered in my area., Conclusion: SSc organizations may be able to address limitations in accessibility and concerns about SSc support groups by implementing online support groups, better informing patients about support group activities, and training support group facilitators., (© 2017, American College of Rheumatology.)

Panic disorder and agoraphobia are both characterized by avoidance behaviors, which are known correlates of treatment discontinuation. The aim of this exploratory study is to distinguish the profile of participants suffering from panic disorder with agoraphobia that complete treatment from those who discontinue therapy by assessing four categories of predictor variables: the severity of the disorder, sociodemographic variables, participants' expectations, and dyadic adjustment. The sample included 77 individuals diagnosed with panic disorder with agoraphobia who completed a series of questionnaires and participated in a cognitive-behavioral group therapy consisting of 14 weekly sessions. Hierarchical linear regression analyses revealed the importance of anxiety, prognosis, and role expectations as well as some individual variables as predictors of therapeutic dropout, either before or during treatment. Among the most common reasons given by the 29 participants who discontinued therapy were scheduling conflicts, dissatisfaction with treatment, and conflicts with their marital partner. These results suggest that expectations and dyadic relationships have an impact on therapeutic discontinuation. The clinical implications of these findings are discussed., (© The Author(s) 2016.)

Objective: Peer facilitators play an important role in determining the success of many support groups for patients with medical illnesses. However, many facilitators do not receive training for their role and report a number of challenges in fulfilling their responsibilities. The objective of this systematic review was to evaluate the effects of training and support programmes for peer facilitators of support groups for people with medical illnesses on (1) the competency and self-efficacy of group facilitators and (2) self-efficacy for disease management, health outcomes and satisfaction with support groups among group members., Methods: Searches included the CENTRAL, CINAHL, EMBASE, MEDLINE, PsycINFO and Web of Science databases from inception through 8 April 2016; reference list reviews; citation tracking of included articles; and trial registry reviews. Eligible studies were randomised controlled trials (RCTs) in any language that evaluated the effects of training programmes for peer facilitators compared with no training or alternative training formats on (1) competency or self-efficacy of peer facilitators, and (2) self-efficacy for disease management, health outcomes and satisfaction with groups of group members. The Cochrane Risk of Bias tool was used to assess risk of bias., Results: There were 9757 unique titles/abstracts and 2 full-text publications reviewed. 1 RCT met inclusion criteria. The study evaluated the confidence and self-efficacy of cancer support group facilitators randomised to 4 months access to a website and discussion forum (N=23; low resource) versus website, discussion forum and 2-day training workshop (N=29). There were no significant differences in facilitator confidence (Hedges' g=0.16, 95% CI -0.39 to 0.71) or self-efficacy (Hedges' g=0.31, 95% CI -0.24 to 0.86). Risk of bias was unclear or high for 4 of 6 domains., Conclusions: Well-designed and well-conducted, adequately powered trials of peer support group facilitator training programmes for patients with medical illnesses are needed., Trial Registration Number: CRD42014013601., Competing Interests: Conflicts of Interest: None declared., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Objectives: Peer-led support groups are an important resource for people living with many rare diseases, including scleroderma (systemic sclerosis, SSc). Little is known, however, about the accessibility of SSc support groups and factors that may discourage people from participating in these groups. The objective of this study was to identify reasons why people with SSc do not participate in SSc support groups., Methods: Canadians with SSc were recruited to complete the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities. Data from respondents who answered the question "Have you participated in SSc support groups?" with "No" were analyzed. Frequencies of participants who responded (1) I'm not interested, (2) None are easily available, and (3) Other (please specify) were tallied. A content analysis approach was used to code the open-ended responses to this question., Results: A total of 280 respondents provided a reason for non-participation in SSc support groups. Key reasons for not participating in support groups included: (1) Not interested or no perceived need (36%); (2) No local support group available (35%); (3) Lack of awareness of the existence of SSc support groups (13%); (4) Practical barriers (6%); (5) Emotional factors (4%); (6) Uncertainty about whether to attend (4%); and (7) Negative perceptions about support groups (3%)., Conclusions: SSc organizations may be able to address current limitations in the accessibility and effectiveness of SSc support groups by implementing online support groups, as well as by providing support group leaders training to help establish and sustain successful SSc support groups.

Background: Systemic sclerosis, or scleroderma, is a chronic and rare connective tissue disease with negative physical and psychological implications. Sources of emotional distress and the impact they have on the lives of people with scleroderma are not well understood., Objectives: To gain an in-depth understanding of the emotional experiences and sources of emotional distress for women and men living with scleroderma through focus group discussions., Methods: Three semi-structured focus group discussions were conducted (two in English, one in French) with a total of 22 people with scleroderma recruited through the Scleroderma Society of Ontario in Hamilton, Ontario and a scleroderma clinic in Montreal, Canada. Interviews were recorded, transcribed, and then coded for emerging themes using thematic inductive analysis., Results: Core themes representing sources of emotional distress were identified, including: (a) facing a new reality; (b) the daily struggle of living with scleroderma; (c) handling work, employment and general financial burden; (d) changing family roles; (e) social interactions; and (f) navigating the health care system. Collectively, these themes refer to the stressful journey of living with scleroderma including the obstacles faced and the emotional experiences beginning prior to receiving a diagnosis and continuing throughout the participants' lives., Conclusion: Scleroderma was portrayed as being an unpredictable and overwhelming disease, resulting in many individuals experiencing multiple sources of emotional distress. Interventions and supportive resources need to be developed to help individuals with scleroderma and people close to them manage and cope with the emotional aspects of the disease.

Systemic sclerosis (SSc), or scleroderma, is a chronic multisystem autoimmune disorder characterised by thickening and fibrosis of the skin and by the involvement of internal organs such as the lungs, kidneys, gastrointestinal tract, and heart. Because there is no cure, feasibly-implemented and easily accessible evidence-based interventions to improve health-related quality of life (HRQoL) are needed. Due to a lack of evidence, however, specific recommendations have not been made regarding non-pharmacological interventions (e.g. behavioural/psychological, educational, physical/occupational therapy) to improve HRQoL in SSc. The Scleroderma Patient-centred Intervention Network (SPIN) was recently organised to address this gap. SPIN is comprised of patient representatives, clinicians, and researchers from Canada, the USA, and Europe. The goal of SPIN, as described in this article, is to develop, test, and disseminate a set of accessible interventions designed to complement standard care in order to improve HRQoL outcomes in SSc.

Objective: Studies of pain in systemic sclerosis (SSc) have used a variety of measures, including single-item measures and the 15-item short-form McGill Pain Questionnaire (MPQ-SF). The objective of our study was to compare the performance of the MPQ-SF to a single-item pain numerical rating scale (NRS) and determine whether the MPQ-SF effectively differentiates between sensory and affective components of pain in SSc., Methods: A cross-sectional, multicenter study of 1091 patients from the Canadian Scleroderma Research Group Registry who completed the MPQ-SF and pain NRS. Correlations of MPQ-SF total scores and pain NRS scores with relevant outcome measures (disability, quality of life, depressive symptoms) were compared. To assess whether the MPQ-SF differentiated between sensory and affective factors, confirmatory factor analysis modeling was used, and correlations of sensory and affective factor scores with other outcome measures were compared., Results: MPQ-SF total score and the pain NRS correlated similarly with other outcome measures, as did the sensory and affective scores. MPQ-SF sensory and affective factors were highly correlated (0.92), and a single-factor model fit as well as a 2-factor (sensory and affective) model., Conclusion: The substantial overlap between sensory and affective subscales of the MPQ-SF and the similarity of the MPQ-SF and NRS pain measures compared to other patient-reported outcomes suggest that the 15-item MPQ-SF does not provide tangible advantages compared to the single-item pain NRS. These findings support recommendations to use a single-item NRS pain measure in SSc as it is less burdensome to patients than the MPQ-SF.