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Objective: Systemic sclerosis (SSc) is a rare, chronic autoimmune disorder associated with disability, diminished physical function, fatigue, pain, and mental health concerns. We assessed minimal detectable changes (MDCs) of the Health Assessment Questionnaire-Disability Index (HAQ-DI), Patient-Reported Outcomes Measurement Information System-29 Profile version 2.0 (PROMIS-29v2.0) domains, and Patient Health Questionnaire (PHQ)-8 in people with SSc., Methods: Scleroderma Patient-Centered Intervention Network Cohort participants completed the HAQ-DI, PROMIS-29v2.0 domains, and PHQ-8 at baseline assessments from April 2014 until August 2023. We estimated MDC95 (smallest change that can be detected with 95% certainty) and MDC90 (smallest change that can be detected with 90% certainty) with 95% confidence intervals (CIs) generated via the percentile bootstrapping method resampling 1,000 times. We compared MDC estimates by age, sex, and SSc subtype., Results: A total of 2,571 participants were included. Most were female (n = 2,241; 87%), and 38% (n = 976) had diffuse SSc. Mean (±SD) age was 54.9 (±12.7) years and duration since onset of first non-Raynaud phenomenon symptom was 10.8 (±8.7) years. MDC95 estimate was 0.41 points (95% CI 0.40-0.42) for the HAQ-DI, between 4.88 points (95% CI 4.72-5.05) and 9.02 points (95% CI 8.80-9.23) for the seven PROMIS-29v2.0 domains, and 5.16 points (95% CI 5.06-5.26) for the PHQ-8. MDC95 estimates were not materially different across subgroups., Conclusion: MDC95 and MDC90 estimates were precise and similar across age, sex, and SSc subtype groups. HAQ-DI MDC95 and MDC90 were substantially larger than previous estimates of HAQ-DI minimal important difference from several small studies. Minimally important differences of all measures should be evaluated in large studies using anchor-based methods., (© 2024 The Author(s). Arthritis Care & Research published by Wiley Periodicals LLC on behalf of American College of Rheumatology.)

Objectives: To compare fatigue in a large multinational systemic sclerosis (SSc) cohort to general population data and identify associated sociodemographic, lifestyle and SSc disease factors., Methods: Scleroderma Patient-centered Intervention Network Cohort participants completed the Patient-Reported Outcomes Measurement Information System-29 v2.0 fatigue domain. T-scores were compared with the USA general population (mean = 50; SD = 10). Multivariable linear regression was used to assess associations with sociodemographic, lifestyle, and disease-related variables., Results: Among 2,385 participants (mean age 54.9 (SD = 12.6) years, 87% female, 38% diffuse SSc), mean fatigue T-score was 54.6 (SD = 11.0); 438 (18%) reported mild fatigue, 641 (27%) moderate, and 180 (8%) severe fatigue. Fatigue was independently associated with sociodemographic factors age (-0.10 points per year, [95% CI -0.14;-0.07]), male sex (-1.67 points, [-2.96;-0.37]), non-married status (0.97 points [0.04; 1.89]), and country (reference USA; France -2.35 points [-3.48;-1.21] and UK 2.38 points [0.80; 3.97]), and lifestyle factors smoking (4.16 points [2.52; 5.80]), alcohol consumption (-0.18 points per drink per week [-0.28;-0.07]), and body-mass index (0.34 points per unit [0.27; 0.42]). Fatigue was associated with disease-related factors gastrointestinal involvement (4.21 points [2.99; 5.43]), digital ulcers (1.51 points, [0.25; 2.77]), moderate small joints contractures (1.41 points [0.13; 2.69]), rheumatoid arthritis (4.34 points [2.37-6.31]) and Sjögren's syndrome (1.89 points [0.23; 3.55]). When pain was included in the model, its association was large (2.19 points [2.03; 2.34]) and interstitial lung disease was also associated (1.21 points [0.42; 2.00])., Conclusions: In people with SSc, fatigue scores were substantially higher than the general population and associated with multiple disease factors including gastrointestinal involvement, several painful disease manifestations, and lung involvement., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Society for Rheumatology.)

Introduction/objective: We investigated (1) work status changes during COVID-19, (2) financial resource adequacy, (3) preferences for work requirements (e.g. remote, workplace, mixed) and (4) work requirements versus preferences, among people with systemic sclerosis., Methods: This was a cross-sectional study of participants in the Scleroderma Patient-centered Intervention Network COVID-19 Cohort, which enrolled participants from the ongoing Scleroderma Patient-centered Intervention Network Cohort and externally in April 2020. In August 2022, participants completed questions on work status, financial well-being using the Consumer Financial Protection Bureau Financial Well-Being Scale, work requirements and work requirement preferences., Results: A total of 298 participants with systemic sclerosis were included. Mean age was 58.6 years (SD = 11.4). There were 101 (34%) participants working at the start of the pandemic and still working in August 2022, 179 (60%) not working at the start of the pandemic and still not working, 10 (3%) who stopped working after April 2020 and 8 (3%) who started working. Mean financial well-being did not change from April 2020 to August 2022 (difference: 0.2 points; 95% confidence interval: -1.1 to 0.7). Working participants (N = 109) preferred flexible work requirements (N = 34, 31%) or working entirely remotely (N = 32, 29%), but most were required to work entirely at a workplace (N = 35, 32%) or combined workplace and remotely with a fixed schedule (N = 31, 28%)., Conclusion: Work status and financial well-being did not change substantively among people with systemic sclerosis during the pandemic. Flexible work policies may support people with systemic sclerosis to work., Competing 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) 2024.)

Competing Interests: E-LN, M-EC, LK, RSH, SH, SP, SJB, LM, SBP, JV, AB, and BDT conceptualised and designed the study. E-LN, M-EC, LK, RSH, and BDT acquired data. E-LN, GV-G, and MG directly accessed and verified the data and did the statistical analysis. E-LN and BDT drafted the manuscript. All authors revised the manuscript, approved the final version, had full access to all the data in the study, and had final responsibility for the decision to submit for publication. Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 patient advisors were Catherine Fortuné, Amy Gietzen, Geneviève Guillot, Nancy Lewis, Michelle Richard, Maureen Sauvé, and Joep Welling. De-identified individual participant data with a data dictionary and analysis codes will be made available upon request to the corresponding author and presentation of a methodologically sound proposal that is approved by the SPIN Data Access and Publications Committee. Data will be available after publication. Data requesters will need to sign a data transfer agreement. Additional, related documents (eg, study protocol or informed consent form) can be made available on request to the corresponding author. This study was funded by the Canadian Institutes of Health Research (CIHR; VR4–172745, GA4–177764), the McGill Interdisciplinary Initiative in Infection and Immunity Emergency COVID-19 Research Fund, Scleroderma Canada via an educational grant from Boehringer Ingelheim, the Scleroderma Society of Ontario, Scleroderma Manitoba, Scleroderma Atlantic, Scleroderma Australia, Scleroderma New South Wales, Scleroderma Victoria, Scleroderma Queensland, the Scleroderma Association of Saskatchewan (Scleroderma SASK), the Scleroderma Association of BC, and Sclérodermie Québec. E-LN was supported by a Fonds de recherche du Québec—Santé (FRQS) Doctoral Research Award, a Canadian Behavioural Interventions Trials Network Platform, and a CIHR Doctoral Studentship. RSH was supported by a CIHR Postdoctoral Fellowship. SP was supported by a FRQS Masters Research Award. BDT was supported by a tier 1 Canada Research Chair. All other authors declare no competing interests.

Objective: Symptoms of anxiety increased early in the COVID-19 pandemic among people with systemic sclerosis (SSc) then returned to pre-pandemic levels, but this was an aggregate finding and did not evaluate whether vaccination may have contributed to reduced anxiety symptom levels. We investigated whether being vaccinated for COVID-19 was associated with reduced anxiety symptoms among people with SSc., Methods: The longitudinal Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Cohort was launched in April 2020 and included participants from the ongoing SPIN Cohort and external enrollees. Participants completed measures bi-weekly through July 2020, then every 4 weeks afterwards through August 2022 (32 assessments). We used linear mixed models to evaluate longitudinal trends of PROMIS Anxiety 4a v1.0 anxiety domain scores and their association with vaccination., Results: Among 517 participants included in analyses, 489 (95%) were vaccinated by September 2021, and no participants were vaccinated subsequently. Except for briefly at the beginning, when few had received a vaccine, and end, when only 28 participants remained unvaccinated, anxiety symptom trajectories were largely overlapping. Participants who were never vaccinated had higher anxiety symptoms by August 2022, but there were no other differences, and receiving a vaccination did not appear to change anxiety symptom trajectories meaningfully., Conclusion: Vaccination did not appear to influence changes in anxiety symptoms among vulnerable people with SSc during the COVID-19 pandemic. This may be due to people restricting their behavior when they were unvaccinated and returning to more normal social engagement once vaccinated to maintain a steady level of anxiety symptoms., Competing Interests: Declaration of competing interest The authors have competing interests to declare., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background/purpose: We previously surveyed adults with systemic sclerosis (SSc) regarding COVID-19 vaccination in April-May 2021. The objective of the present study was to update through June-July 2022 and assess self-reported (1) COVID-19 vaccination rates, including boosters; (2) vaccine-related adverse events; (3) peri‑vaccination immunosuppressive medication management; (4) vaccine hesitancy; and (5) prevalence and severity of COVID-19 infections., Methods: In April-May 2021 and June-July 2022, SPIN Cohort participants completed surveys on COVID-19 vaccination and infection. Primary vaccine series was defined according to the standard for each COVID-19 vaccine; additional vaccine administrations were considered booster doses. Fully vaccinated was defined as having completed a primary vaccine series and at least one booster dose., Results: 544 participants completed the 2021 survey only, 101 the 2022 survey only, and 388 both surveys. Among 489 participants with 2022 data, 437 (89 %) had received both primary and booster vaccines. Among all 1,033 participants, 960 (93 %) received at least one dose. At least one adverse reaction was reported by 34 % (330 of 960 participants) following first, 48 % (314 of 657 participants) following second, and 34 % (147 of 437 participants) following booster vaccine doses (primarily sore arm and fatigue); no severe adverse reactions were reported. SSc symptom worsening was reported in 6 % (53 of 960) after the first, 6 % after the second (39 of 657), and 4 % (17 of 437) after the booster dose. Of participants taking methotrexate or mycophenolate (including Cellcept or Myfortic), 34 of 266 (13 %) reported that they temporarily stopped or decreased their medication at the first dose, 32 of 215 (15 %) at the second dose, and 28 of 148 (19 %) for booster vaccination. Of 52 individuals not fully vaccinated with primary and booster doses in 2022, 29 (56 %) reported worry about vaccine related SSc flares. 172 of 489 (35 %) 2022 participants reported a history of at least one COVID-19 infection; 114 (66 %) occurred after receiving at least a primary vaccine series. Among initial COVID-19 infections, 9 (5 %) were asymptomatic, 66 (38 %) involved mild symptoms, 82 (48 %) moderate symptoms, and 15 (9 %) required hospitalization., Conclusion: Most people with SSc in the study were fully vaccinated, and most continued their methotrexate or mycophenolate post-primary and booster vaccinations. Over half of vaccine-hesitant participants were concerned regarding risk of SSc flare; however, few vaccinated participants reported this. These data may be useful for counselling people with SSc regarding COVID-19 vaccine safety and outcomes., Competing Interests: Declaration of competing interest Dr. Gordon reports grants from Merck and Cumberland, all outside of the submitted work. Dr. Denton reports personal fees from Janssen, GlaxoSmithKline, Bayer, Sanofi-Aventis, Galapagos, Boehringer Ingelheim, Roche, CSL Behring, Corbus, Acceleron, Horizon, ARXX Therapeutics, all outside the submitted work. Dr. Spiera reports grants from Roche-Genentech, GSK, Boehringer Ingelheim, Chemocentryx, Corbus, Formation Biologics, Inflarx, Kadmon, Astra Zeneca, Principia and consulting from Abbvie, Roche-Genetech, GSK, Sanofi, Janssen, Chemocentryx, Formation Biologics, and Chemomab Therapeutics, 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., (Copyright © 2024. Published by Elsevier Inc.)

Introduction/objective: People with systemic sclerosis (SSc) face barriers to physical activity. Few studies have described physical activity in SSc, and none have explored physical activity longitudinally during COVID-19. We evaluated physical activity from April 2020 to March 2022 among people with SSc., Methods: The Scleroderma Patient-centred Intervention Network (SPIN) COVID-19 Cohort was launched in April 2020 and included participants from the ongoing SPIN Cohort plus external enrolees. Participants completed measures bi-weekly through July 2020, then every 4 weeks afterwards (28 assessments). Physical activity was assessed via the self-reported International Physical Activity Questionnaire-Elderly. Analyses included estimated means with 95% confidence intervals for physical activity across assessments. Missing data were imputed for main analyses. Sensitivity analyses included evaluating only participants who completed >90% of items for >21 of 28 possible assessments ('completers') and stratified analyses by sex, age, country and SSc subtype., Results: A total of 800 people with SSc enrolled. Mean age was 55.6 (standard deviation (SD) = 12.6) years. Physical activity significantly decreased from April 2020 to March 2021 (standardized mean difference (SMD) = -0.17, 95% confidence interval (CI) = -0.26 to -0.07) and was stable from March 2021 to March 2022 (SMD = -0.05, 95% CI = -0.15 to 0.05). Results were similar for completers and subgroups. The proportion of participants who met World Health Organization minimum physical activity recommendations of at least 150 min of moderate-to-vigorous activity per week ranged from 63% to 82% across assessments., Conclusion: Physical activity decreased by a relatively small amount, on average, across the pandemic. Most participants met recommended physical activity levels., Competing 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) 2024.)

Background: Many individuals with systemic sclerosis (SSc) are at heightened risk for COVID-19 related morbidity and isolation due to interstitial lung disease, frailty, and immunosuppressant use. Minimal research has explored loneliness predictors in individuals with chronic illnesses during COVID-19. This study evaluated moderators of loneliness trajectories in individuals with SSc during COVID-19., Methods: Longitudinal data were analyzed across 30 timepoints from April 2020 to May 2022 from 775 adults in the Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Cohort. Hierarchical linear modeling evaluated cross-level moderators of loneliness trajectories, including marital status, baseline number of household members, number of virtual or telephone one-on-one or virtual group conversations, number of hours spent enjoying in-person household conversations or activities, and satisfaction with quality of in-person household conversations (all in the past week). Level-1 moderation analyses assessed effects of conversation, activity, and satisfaction means and slopes over time., Results: Baseline values were not statistically significant moderators of loneliness trajectories. Higher mean (averaged over time) virtual or telephone one-on-one and in-person household conversations, in-person household activity, and in-person household conversation satisfaction were associated with lower loneliness trajectories (ps < .05). The relationship between in-person household conversation satisfaction and loneliness trajectory was statistically significantly but minimally attenuated over time (p < .001)., Conclusions: For people with SSc, higher mean conversation, activity, and satisfaction variables were associated with lower levels of loneliness during the pandemic, but changes in these social variables were generally not predictive of changes in loneliness., (© 2024. International Society of Behavioral Medicine.)

Objective: A previous study using Scleroderma Patient-centered Intervention Network (SPIN) Cohort data identified five classes of people with systemic sclerosis (also known as scleroderma) based on patient-reported somatic (fatigue, pain, sleep) and mental health (anxiety, depression) symptoms and compared indicators of disease severity between classes. Across four classes ("low", "normal", "high", "very high"), there were progressively worse somatic and mental health outcomes and greater disease severity. The fifth ("high/low") class, however, was characterized by high disease severity, fatigue, pain, and sleep but low mental health symptoms. We evaluated resilience across classes and compared resilience between classes., Methods: Cross-sectional study. SPIN Cohort participants completed the 10-item Connor-Davidson-Resilience Scale (CD-RISC) and PROMIS v2.0 domains between August 2022 and January 2023. We used latent profile modeling to identify five classes as in the previous study and multiple linear regression to compare resilience levels across classes, controlling for sociodemographic and disease variables., Results: Mean CD-RISC score (N = 1054 participants) was 27.7 (standard deviation = 7.3). Resilience decreased progressively across "low" to "normal" to "high" to "very high" classes (mean 4.7 points per step). Based on multiple regression, the "high/low" class exhibited higher resilience scores than the "high" class (6.0 points, 95% confidence interval [CI] 4.9 to 7.1 points; standardized mean difference = 0.83, 95% CI 0.67 to 0.98)., Conclusions: People with worse disease severity and patient-reported outcomes reported substantially lower resilience, except a class of people with high disease severity, fatigue, pain, and sleep disturbance but positive mental health and high resilience., Competing Interests: Declaration of competing interest The authors have no competing interests to report., (Copyright © 2023. Published by Elsevier Inc.)

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.

Objective: Some individuals with systemic sclerosis (SSc) report positive mental health, despite severe disease manifestations, which may be associated with resilience, but no resilience measure has been validated in SSc. This study was undertaken to assess the validity, reliability, and differential item functioning (DIF) between English- and French-language versions of the 10-item Connor-Davidson Resilience Scale (CD-RISC-10) in SSc., Methods: Eligible participants were enrolled in the Scleroderma Patient-centered Intervention Network Cohort and completed the CD-RISC-10 between August 2022 and January 2023. We used confirmatory factor analysis (CFA) to evaluate the CD-RISC-10 factor structure and conducted DIF analysis across languages with Multiple Indicators Multiple Causes models. We tested convergent validity with another measure of resilience and measures of self-esteem and depression and anxiety symptoms. We assessed internal consistency and test-retest reliability using Cronbach's alpha and intraclass correlation coefficient (ICC)., Results: A total of 962 participants were included in this analysis. CFA supported a single-factor structure (Tucker-Lewis index = 0.99, comparative fit index = 0.99, root mean square error of approximation = 0.08 [90% confidence interval (90% CI) 0.07, 0.09]). We found no meaningful DIF. Internal consistency was high (α = 0.93 [95% CI 0.92, 0.94]), and we found that correlations with other measures of psychological functioning were moderate to large (|r| = 0.57-0.78) and confirmed study hypotheses. The scale showed good 1-2-week test-retest reliability (ICC 0.80 [95% CI 0.75, 0.85]) in a subsample of 230 participants., Conclusion: The CD-RISC-10 is a valid and reliable measure of resilience in SSc, with score comparability across English and French versions., (© 2023 The Authors. Arthritis Care & Research published by Wiley Periodicals LLC on behalf of American College of Rheumatology.)

Background: How support and informational needs of people with systemic sclerosis (SSc) may differ by time since diagnosis is not known. Our objective was to determine if informational and support needs of recently diagnosed individuals with systemic sclerosis differ from people diagnosed for longer periods of time., Methods: The North American Scleroderma Support Group Members survey included 30 items on reasons for attending support groups. Respondents were classified by time since diagnosis of 0-3 years, 4-9 years or 10+ years. Survey item responses were dichotomized into Not Important or Somewhat Important versus Important or Very Important . We conducted Chi-square tests with Hochberg's Sequential Method to identify item differences by time since diagnosis., Results: A total of 175 respondents completed the survey. Most support needs were rated as Important or Very Important by respondents, regardless of disease duration, particularly needs related to interpersonal and social support (10 items; median 81%) and learning about disease treatment and management strategies (11 items; median 82%). Discussing other aspects of living with systemic sclerosis (e.g. spirituality, discussing disease with family and friends) was rated lower (9 items; 44%). Respondents with 0-3 years since diagnosis were the highest on 29 of 30 items. Respondents with 0-3 years since diagnosis were significantly higher on items related to discussing medical care and 4 items on other aspects (spirituality, talking with family and friends, financial issues, sexual issues)., Conclusion: People with systemic sclerosis have a wide range of information and support needs, regardless of their disease duration, but people with recent diagnoses have greater needs., Competing 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) 2023.)

Objective: Loneliness has been associated with poorer health-related quality of life but has not been studied in patients with systemic sclerosis (SSc). The current study was undertaken to examine and compare the psychometric properties of the English and French versions of the University of California, Los Angeles, Loneliness Scale-6 (ULS-6) in patients with SSc during the COVID-19 pandemic., Methods: This study used baseline cross-sectional data from 775 adults enrolled in the Scleroderma Patient-Centered Intervention Network (SPIN) COVID-19 Cohort. Reliability and validity of ULS-6 scores overall and between languages were evaluated using confirmatory factor analysis (CFA), differential item functioning (DIF) through the multiple-indicator multiple-cause (MIMIC) model, omega/alpha calculation, and correlations of hypothesized convergent relationships., Results: CFA for the total sample supported the single-factor structure (comparative fit index [CFI] 0.96, standardized root mean residual [SRMR] 0.03), and all standardized factor loadings for items were large (0.60-0.86). The overall MIMIC model with language as a covariate fit well (CFI 0.94, SRMR 0.04, root mean square error of approximation 0.11). Statistically significant DIF was found for 3 items across language (β item2  = 0.14, P < 0.001; β item4  = -0.07, P = 0.01; β item6  = 0.13, P < 0.001), but these small differences were without practical measurement implications. Analyses demonstrated high internal consistency with no language-based convergent validity differences., Conclusion: Analyses demonstrated evidence of acceptable reliability and validity of ULS-6 scores in English- and French-speaking adults with SSc. DIF analysis supported use of the ULS-6 to examine comparative experiences of loneliness without adjusting for language., (© 2023 The Authors. Arthritis Care & Research published by Wiley Periodicals LLC on behalf of American College of Rheumatology.)

Objectives: People with systemic sclerosis (SSc) are vulnerable in COVID-19 and face challenges related to shifting COVID-19 risk and protective restrictions. We evaluated mental health symptom trajectories in people with SSc through March 2022., Methods: The longitudinal Scleroderma Patient-centred Intervention Network (SPIN) COVID-19 cohort was launched in April 2020 and included participants from the ongoing SPIN Cohort and external enrolees. Analyses included estimated means with 95% CIs for anxiety and depression symptoms pre-COVID-19 for ongoing SPIN Cohort participants and anxiety, depression, loneliness, and fear of COVID-19 for all participants across 28 COVID-19 assessments up to March 2022. We conducted sensitivity analyse including estimating trajectories using only responses from participants who completed >90% of items for ≥21 of 28 possible assessments ("completers") and stratified analyses for all outcomes by sex, age, country, and SSc subtype., Results: Anxiety symptoms increased in early 2020 but returned to pre-COVID-19 levels by mid-2020 and remained stable through March 2022. Depression symptoms did not initially change but were slightly lower by mid-2020 compared to pre-COVID-19 and were stable through March 2022. COVID-19 fear started high and decreased. Loneliness did not change across the pandemic. Results were similar for completers and for all subgroups., Conclusions: People with SSc continue to face COVID-19 challenges related to ongoing risk, the opening of societies, and removal of protective restrictions. People with SSc, in aggregate, appear to be weathering the pandemic well, but health care providers should be mindful that some individuals may benefit from mental health support.

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.)

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).)

Purpose/objective: This study evaluated the relationships among pain, mental health symptom severity, life satisfaction, and understanding from others in veterans with spinal cord injury (SCI)., Research Method/design: A sample of 221 individuals with SCI were interviewed by a psychologist during their annual evaluation in a Veterans Affairs medical center in an urban Mid-Atlantic region. Participants completed single-item, Likert-scale measures of life satisfaction (McGuire Health Impact on Participation [M-HIP]), pain severity (M-HIP), and understanding of others (from a modified Appraisals of DisAbility Primary and Secondary Scale-Short Form [ADAPSS-sf]), along with the Patient Health Questionnaire-4 (PHQ-4), a measure of mental health symptom severity., Results: In linear regression models, pain (β = .29, p < .001) and understanding from others (β = -.28, p < .001) were significantly associated with mental health symptom severity with a marginally significant interaction effect (β = -.32, p = .099). Pain (β = -.33, p < .001) and understanding from others (β = .32, p < .001) were also significantly associated with life satisfaction; however, there was no significant interaction (β = .22, p = .234)., Conclusion/implications: This study showed that understanding from others and pain are important factors related to mental health and life satisfaction for veterans with SCI and highlights interventions targeting these relations. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Competing Interests: Funding for this study was provided by the Canadian Institutes of Health Research (CIHR; GA4-177764). Additionally, the Scleroderma Patient-centered Intervention Network (SPIN) has received funding for the SPIN Cohort and to support studies, including the present study, from the Arthritis Society; the Lady Davis Institute for Medical Research of the Jewish General Hospital, Montreal, Canada; the Jewish General Hospital Foundation, Montreal, Canada; McGill University, Montreal, Canada; the Scleroderma Society of Ontario; Scleroderma Canada; Sclérodermie Québec; Scleroderma Manitoba; Scleroderma Atlantic; the Scleroderma Association of BC; Scleroderma SASK; Scleroderma Australia; Scleroderma New South Wales; Scleroderma Victoria; and Scleroderma Queensland. YW was supported by a Fonds de recherche du Québec—Santé Postdoctoral Training Fellowship, RSH was supported by a CIHR Postdoctoral Training Award, and BDT was supported by a Tier 1 Canada Research Chair, all outside of the present work. No sponsor or funder was involved in the study design; in the collection, analysis, and interpretation of the data; in the writing of the report; or in the decision to submit the paper for publication. JKG, KS, LK, M-EC, RSH, CPD, LM, BDT, RFS, and members of the SPIN SARS-CoV-2 Vaccination Patient Advisory Team contributed to the conception and design of study. M-EC, RSH, NØ, JN, AB, MC-A, AC-J, and BDT contributed to oversight and management of data collection. YW and BDT contributed to data analysis and accessed and verified the underlying data. All authors contributed to the interpretation of results. JKG and KS drafted the manuscript. All authors provided a critical review and approved the final manuscript. JKG is the guarantor. A full list of the SPIN investigators is listed in the appendix. JKG and KS are joint first authors; BDT and RFS are joint senior authors. JKG reports grants from Cumberland and Eicos, outside of the submitted work. CPD reports personal fees from Janssen, GlaxoSmithKline (GSK), Bayer, Sanofi-Aventis, Galapagos, Boehringer Ingelheim, Roche, CSL Behring, Corbus Pharmaceuticals, Acceleron Pharma, Horizon Therapeutics, and ARXX Therapeutics, all outside the submitted work. LM reports personal fees from Actelion/Johnson & Johnson, grants from LFB, non-financial support from Octapharma, and non-financial support from Grifols, all outside of the submitted work. RFS reports grants from Roche-Genentech, GSK, Boehringer Ingelheim, Chemocentryx, Corbus Pharmaceuticals, Formation Biologics, InflaRx, Kadmon, AstraZeneca, and Principia Biopharma, and consulting fees from AbbVie, Roche-Genentech, GSK, Sanofi, Janssen, Chemocentryx, Formation Biologics, and Chemomab Therapeutics, all outside the submitted work. All other authors declare no competing interests. De-identified individual participant data will be made available 12 months after publication upon request to the corresponding author and presentation of a methodologically sound proposal that is approved by the SPIN Data Access and Publications Committee.

Background: The Scleroderma Patient-centered Intervention Network (SPIN) developed an online self-management program (SPIN-SELF) designed to improve disease-management self-efficacy in people with systemic sclerosis (SSc, or scleroderma). The aim of this study was to evaluate feasibility aspects for conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF Program., Methods: This feasibility trial was embedded in the SPIN Cohort and utilized the cohort multiple RCT design. In this design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about the trial. Participants in the intervention arm are informed and provide consent, but not the control group. Forty English-speaking SPIN Cohort participants from Canada, the USA, or the UK with low disease-management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale [SEMCD] score ≤ 7) who were interested in using an online self-management program were randomized (3:2 ratio) to be offered the SPIN-SELF Program or usual care for 3 months. Program usage was examined via automated usage logs. User satisfaction was assessed with semi-structured interviews. Trial personnel time requirements and implementation challenges were logged., Results: Of 40 SPIN Cohort participants randomized, 26 were allocated to SPIN-SELF and 14 to usual care. Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly, except that two participants with SEMCD scores > 7 (scores of 7.2 and 7.3, respectively) were included, which was caused by a system programming error that rounded SEMCD scores. Of 26 SPIN Cohort participants offered the SPIN-SELF Program, only 9 (35%) consented to use the program. Usage logs showed that use of the SPIN-SELF Program was low: 2 of 9 users (22%) logged into the program only once (median = 3), and 4 of 9 (44%) accessed none or only 1 of the 9 program's modules (median = 2)., Conclusions: The results of this study will lead to substantial changes for the planned full-scale RCT of the SPIN-SELF Program that we will incorporate into a planned additional feasibility trial with progression to a full-scale trial. These changes include transitioning to a conventional RCT design with pre-randomization consent and supplementing the online self-help with peer-facilitated videoconference-based groups to enhance engagement., Trial Registration: clinicaltrials.gov , NCT03914781 . Registered 16 April 2019., (© 2022. The Author(s).)

Competing Interests: RSH, LK, M-EC, SP, SJB, LM, JV, ABe, BDT, and members of the SPIN-COVID-19 patient advisory team were responsible for study concept and design. RSH, LK, M-EC, ABo, ABe, and BDT were responsible for data acquisition. RSH and LK directly accessed and verified the data. RSH, ZN, and ABe were responsible for statistical analysis. RSH and BDT drafted the manuscript. All authors provided critical revision of the manuscript for important intellectual content, approved the final version, and agree to be accountable for all aspects of the work. LM reports 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 competing interests. De-identified individual participant data with a data dictionary and analysis codes that were used to generate the results reported in this Comment will be made available upon request to the corresponding author and presentation of a methodologically sound proposal that is approved by the SPIN data access and publications committee. Data will be available after publication. Data requesters will need to sign a data transfer agreement. The study was funded by the Canadian Institutes of Health Research (number VR4-172745, GA4-177764), 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; Scleroderma Society of Ontario; Scleroderma Manitoba; Scleroderma Atlantic; Scleroderma Australia; Scleroderma New South Wales; Scleroderma Victoria; Scleroderma Queensland; Scleroderma SASK; Scleroderma Association of BC; and Sclérodermie Québec. RSH and ZN were supported by Mitacs post-doctoral fellowship awards, ABe was supported by a Fonds de recherche du Québec—Santé senior researcher salary award, and BDT was supported by a tier 1 Canada Research Chair, all outside of the submitted work. No sponsor had any role in the study design, data collection, data analysis, or interpretation, writing of the report, or in the decision to submit for publication.

Background: Systemic sclerosis (scleroderma; SSc) is a rare autoimmune connective tissue disease. We completed an initial feasibility trial of an online self-administered version of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program using the cohort multiple randomized controlled trial (RCT) design. Due to low intervention offer uptake, we will conduct a new feasibility trial with progression to full-scale trial, using a two-arm parallel, partially nested RCT design. The SPIN-SELF Program has also been revised to include facilitator-led videoconference group sessions in addition to online material. We will test the group-based intervention delivery format, then evaluate the effect of the SPIN-SELF Program on disease management self-efficacy (primary) and patient activation, social appearance anxiety, and functional health outcomes (secondary)., Methods: This study is a feasibility trial with progression to full-scale RCT, pending meeting pre-defined criteria, of the SPIN-SELF Program. Participants will be recruited from the ongoing SPIN Cohort ( http://www.spinsclero.com/en/cohort ) and via social media and partner patient organizations. Eligible participants must have SSc and low to moderate disease management self-efficacy (Self-Efficacy for Managing Chronic Disease (SEMCD) Scale score ≤ 7.0). Participants will be randomized (1:1 allocation) to the group-based SPIN-SELF Program or usual care for 3 months. The primary outcome in the full-scale trial will be disease management self-efficacy based on SEMCD Scale scores at 3 months post-randomization. Secondary outcomes include SEMCD scores 6 months post-randomization plus patient activation, social appearance anxiety, and functional health outcomes at 3 and 6 months post-randomization. We will include 40 participants to assess feasibility. At the end of the feasibility portion, stoppage criteria will be used to determine if the trial procedures or SPIN-SELF Program need important modifications, thereby requiring a re-set for the full-scale trial. Otherwise, the full-scale RCT will proceed, and outcome data from the feasibility portion will be utilized in the full-scale trial. In the full-scale RCT, 524 participants will be recruited., Discussion: The SPIN-SELF Program may improve disease management self-efficacy, patient activation, social appearance anxiety, and functional health outcomes in people with SSc. SPIN works with partner patient organizations around the world to disseminate its programs free-of-charge., Trial Registration: ClinicalTrials.gov NCT04246528 . Registered on 27 January 2020., (© 2021. The Author(s).)

Lesbian, gay, bisexual, and transgender (LGBT) individuals experience intimate partner violence (IPV) at high rates, even bidirectionally, yet no studies to date have investigated IPV among LGBT individuals in Latin America. Thus, this study explored discrimination and IPV victimization and perpetration among LGBT individuals in Latin America. Participants ( N = 99) were recruited for this online, cross-sectional survey via convenience sampling and completed measures of LGBT discrimination and lifetime IPV victimization and perpetration. Results indicated that 60.61% of the sample reported at least one form of IPV victimization at some point in their life, and 56.57% reported at least one form of perpetration. Psychological aggression was the most common type of IPV victimization and perpetration. Physical assault victimization was positively correlated with work/school heterosexism. Perpetration and victimization of physical assault, psychological aggression, and sexual coercion were correlated with the "other" heterosexism subscale. Cluster analysis revealed a three-cluster solution: participants in Cluster 1 were high in IPV victimization and perpetration; Cluster 2 participants were low in IPV victimization and perpetration; and Cluster 3 participants were moderate on psychological aggression perpetration and victimization, but low on the other three forms of IPV. Cluster 1 participants had a higher score for the "other" heterosexism subscale than Cluster 2. This study highlights the need to address certain aspects of IPV, such as bidirectionality, in clinical encounters such as safety planning. Future research should examine the role of Latinx identity in LGBT individuals' experiences of discrimination and IPV.

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.)

Introduction: Systemic sclerosis (SSc; scleroderma) is a rare, chronic, autoimmune disease with a high level of burden, a significant impact on the ability to carry out daily activities, and a considerable negative impact on health-related quality of life. Non-pharmacological interventions could be provided to potentially improve mental and physical health outcomes. However, the effectiveness of non-pharmacological interventions on health and well-being among individuals with SSc has not been well established. The proposed living systematic review aims to identify and evaluate randomised controlled trial (RCT) evidence on the effectiveness of non-pharmacological and non-surgical interventions on mental and physical health outcomes and on the delivery of such services in SSc., Methods and Analysis: Eligible studies will be RCTs that examine non-pharmacological and non-surgical interventions aimed at improving health outcomes among individuals with SSc or the delivery of services intended to improve healthcare or support of people with SSc (eg, support groups). All RCTs included in a previous systematic review that sought studies published between 1990 and March 2014 will be evaluated for inclusion. Additional trials will be sought from January 2014 onwards using a similar, augmented search strategy developed by a health sciences librarian. We will search the MEDLINE, Embase, CINAHL, PsycINFO, Cochrane Library and Web of Science databases and will not restrict by language. Two independent reviewers will determine the eligibility of identified RCTs and will extract data using a prespecified standardised form in DistillerSR. Meta-analyses will be considered if ≥2 eligible RCTs report similar non-pharmacological interventions and comparable health outcomes. We will conduct a qualitative synthesis for interventions that cannot be synthesised via meta-analysis., Ethics and Dissemination: We will post initial and ongoing results via a website, publish results periodically via peer-reviewed journal publication, and present results at patient-oriented events., Prospero Registration Number: CRD42020219914., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

There is significant evidence to suggest that intimate partner violence (IPV) is associated with mental health problems including anxiety and depression. However, this research has almost exclusively been conducted through heteronormative and cisgender lenses. The current study is an exploratory, quantitative analysis of the relationship between experiences of IPV and mental health among transgender/gender nonconforming (TGNC) adults. A national sample of 78 TGNC individuals completed a survey online measuring participants' experiences with IPV and depression, anxiety, and satisfaction with life. Of the sample, 72% reported at least one form of IPV victimization in their lifetime: 32% reported experiencing sexual IPV, 71% psychological IPV, 42% physical IPV, and 29% IPV assault with injury. All four types of IPV were positively associated with anxiety, and all but physical abuse was significantly associated with depression. None of the four types of IPV was associated with satisfaction with life. In a canonical correlation, IPV victimization and mental health had 31% overlapping variance, a large-sized effect. Sexual IPV and anxiety were the highest loading variables, suggesting that TGNC individuals who have experienced sexual IPV specifically tended to have higher levels of anxiety. These findings support previous qualitative, small-sample studies suggesting that IPV is a pervasive problem in the TGNC community. TGNC individuals who have experienced IPV may be at increased risk for mental health problems, and therefore, IPV history may trigger appropriate mental health screenings and referrals for this population in health care settings.

Introduction: No studies have examined factors associated with fear in any group of people vulnerable during COVID-19 due to pre-existing medical conditions., Objective: To investigate factors associated with fear of consequences of COVID-19 among people living with a pre-existing medical condition, the autoimmune disease systemic sclerosis (SSc; scleroderma), including country., Methods: Pre-COVID-19 data from the Scleroderma Patient-centered Intervention Network (SPIN) Cohort were linked to COVID-19 data collected in April 2020. Multivariable linear regression was used to assess factors associated with continuous scores of the 10-item COVID-19 Fears Questionnaire for Chronic Medical Conditions, controlling for pre-COVID-19 anxiety symptoms., Results: Compared to France (N = 156), COVID-19 Fear scores among participants from the United Kingdom (N = 50) were 0.12 SD (95% CI 0.03 to 0.21) higher; scores for Canada (N = 97) and the United States (N = 128) were higher, but not statistically significant. Greater interference of breathing problems was associated with higher fears due to COVID-19 (Standardized regression coefficient = 0.12, 95% CI 0.01 to 0.23). Participants with higher financial resources adequacy scores had lower COVID-19 Fear scores (Standardized coefficient = -0.18, 95% CI -0.28 to -0.09)., Conclusions: Fears due to COVID-19 were associated with clinical and functional vulnerabilities in this chronically ill population. This suggests that interventions may benefit from addressing specific clinical issues that apply to specific populations. Financial resources, health policies and political influences may also be important. The needs of people living with chronic illness during a pandemic may differ depending on the social and political context in which they live., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Background and Objective: Research has documented the stigma that individuals with degenerative neurological diseases experience, but caregivers also experience stigma by association (i.e., affiliate stigma). In order to shed light on the stigma of caregivers of people with degenerative neurological diseases, the current study aimed to explore cross-cultural differences in the prevalence of Parkinson's disease (PD) caregiver affiliate stigma, as well as the relationship between PD symptoms and caregiver affiliate stigma. Applications for Alzheimer's disease are discussed., Methods: Survey data were collected in PD clinics at public, academic medical centers. Informal caregivers of an individual with PD from the US (n = 105) and from Mexico (n = 148) participated in the study. Caregivers completed a questionnaire that included the MDS Unified PD Rating Scale to describe the symptoms of the individual with PD, as well as the Affiliate Stigma Scale and demographic information., Results: A series of multiple regressions was run to examine whether PD symptoms were associated with affiliate stigma and if these differed by country. These regressions suggested that different patterns of PD symptoms predicted affiliate stigma in each country. Stigma was higher in the US compared to Mexico, and the relationship between bowel/bladder symptoms and affiliate stigma was significantly stronger in the US., Conclusion: Symptoms of individuals with neurodegenerative diseases are related to affiliate stigma experienced by caregivers, and these relationships may differ cross-culturally. Negative public attitudes concerning bowl and bladder issues and the physical symptoms that accompany PD remain a source of stigma for caregivers and families, particularly in the US. Interventions for caregivers of individuals with neurodegenerative diseases should include strategies for coping with stigma concerning bladder and bowel problems, as well as other physical and mental health issues., (Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.net.)

Background : Research from high-income countries on substance use among lesbian, gay, bisexual, and transgender (LGBT) adults is growing; however, limited empirical research exists on LGBT adults in Mexico. Filling this gap is critical as LGBT adults experience unique stressors that may place them at risk for substance use-related health outcomes. Objectives : This study sought to characterize substance use prevalence and magnitude among a convenience sample of Mexican LGBT adults. Methods : A cross-sectional online survey was conducted using a sample of Spanish-speaking, self-identified LGBT adults ( n  = 92) residing in Mexico who were recruited through online forums of LGBT-focused organizations. Descriptive and frequency analyses were conducted. Results: Participants predominantly identified as cisgender men ( n  = 44) and gay/lesbian (n = 68). Participants reported high rates of past 90-day legal substance use (>93% for alcohol and >57% for tobacco). The most commonly reported illicit drug used in the past 90 days was marijuana (>29%). Conclusions : While the sample reported lower prevalence and magnitude of substance use relative to other Mexican or United States LGBT samples, the findings highlight that legal and illicit substance use presents health risks for Mexican LGBT individuals. LGBT identity-affirming substance use treatment may reduce substance use-related health burden among this population.

Introduction: No studies have reported mental health symptom comparisons prior to and during COVID-19 in vulnerable medical populations., Objective: To compare anxiety and depression symptoms among people with a pre-existing medical condition and factors associated with changes., Methods: Pre-COVID-19 Scleroderma Patient-centered Intervention Network Cohort data were linked to COVID-19 data from April 2020. Multiple linear and logistic regression were used to assess factors associated with continuous change and ≥ 1 minimal clinically important difference (MCID) change for anxiety (PROMIS Anxiety 4a v1.0; MCID = 4.0) and depression (Patient Health Questionnaire-8; MCID = 3.0) symptoms, controlling for pre-COVID-19 levels., Results: Mean anxiety symptoms increased 4.9 points (95% confidence interval [CI] 4.0 to 5.7). Depression symptom change was negligible (0.3 points; 95% CI -0.7 to 0.2). Compared to France (N = 159), adjusted anxiety symptom change scores were significantly higher in the United Kingdom (N = 50; 3.3 points, 95% CI 0.9 to 5.6), United States (N = 128; 2.5 points, 95% CI 0.7 to 4.2), and Canada (N = 98; 1.9 points, 95% CI 0.1 to 3.8). Odds of ≥1 MCID increase were 2.6 for the United Kingdom (95% CI 1.2 to 5.7) but not significant for the United States (1.6, 95% CI 0.9 to 2.9) or Canada (1.4, 95% CI 0.7 to 2.5). Older age and adequate financial resources were associated with less continuous anxiety increase. Employment and shorter time since diagnosis were associated with lower odds of a ≥ 1 MCID increase., Conclusions: Anxiety symptoms, but not depression symptoms, increased dramatically during COVID-19 among people with a pre-existing medical condition., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objective: Fear associated with medical vulnerability should be considered when assessing mental health among individuals with chronic medical conditions during the COVID-19 pandemic. The objective was to develop and validate the COVID-19 Fears Questionnaire for Chronic Medical Conditions., Methods: Fifteen initial items were generated based on suggestions from 121 people with the chronic autoimmune disease systemic sclerosis (SSc; scleroderma). Patients in a COVID-19 SSc cohort completed items between April 9 and 27, 2020. Exploratory factor analysis (EFA) and item analysis were used to select items for inclusion. Cronbach's alpha and Pearson correlations were used to evaluate internal consistency reliability and convergent validity. Factor structure was confirmed with confirmatory factor analysis (CFA) in follow-up data collection two weeks later., Results: 787 participants completed baseline measures; 563 of them completed the follow-up assessment. Ten of 15 initial items were included in the final questionnaire. EFA suggested that a single dimension explained the data reasonably well. There were no indications of floor or ceiling effects. Cronbach's alpha was 0.91. Correlations between the COVID-19 Fears Questionnaire and measures of anxiety (r = 0.53), depressive symptoms (r = 0.44), and perceived stress (r = 0.50) supported construct validity. CFA supported the single-factor structure (χ 2 (35) = 311.2, p < 0.001, Tucker-Lewis Index = 0.97, Comparative Fit Index = 0.96, Root Mean Square Error of Approximation = 0.12)., Conclusion: The COVID-19 Fears Questionnaire for Chronic Medical Conditions can be used to assess fear among people at risk due to pre-existing medical conditions during the COVID-19 pandemic., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Background: Heterosexism has been identified as being a contributing factor of suicidality in sexual minority adults (SMA), and social support is believed to be important for mitigating these effects. Research evaluating racial/ethnic differences in suicidality among SMA is limited despite racial/ethnic minorities being at greater risk. Aims: We aimed to examine the associations between heterosexism, suicidal ideation, and social support in a sample of racially/ethnically diverse SMA. Method: SMA ( N = 239) were recruited as part of an online survey on sexuality and health based in the United States. Results: There were significant positive main effects of heterosexism and significant negative main effects for non-White racial/ethnic identity on suicidal ideation. There were significant negative main effects for social support from family and a significant other but not from friends. A significant interaction of social support from a significant other and racial ethnic identity was qualified by a significant three-way interaction with heterosexism. Social support from a significant other buffered the effect of heterosexism on suicidal ideation among non-White but not among White SMA. All other interactions were not significant. Limitations: Within-group differences of racial/ethnic groups and other domains of social support were not examined, and the cross-sectional nature of the data precludes causal inference. Conclusion: Support from a significant other may be important for suicidality, particularly for racial/ethnic minority SMA.

Objective: The population of individuals with Parkinson's disease (PD) is growing in Mexico and the United States, and there is an increasing need for family members to provide caregiving. This study examined the connections between family dynamics and coping, or sense of coherence, among PD caregivers in Mexico (n = 148) and the United States (n = 105)., Methods: Caregivers completed measures of family dynamics and sense of coherence across indices of comprehensibility, manageability, and meaningfulness., Results: Although caregivers in Mexico and the United States had similar levels of sense of coherence and family dynamics reflecting strengths/adaptability and being overwhelmed with difficulties, caregivers in Mexico had worse disrupted communication. Family dynamics explained: 24.2% of the variance in caregiver comprehensibility in the United States and 17.5% in Mexico; 34.1% in manageability in the United States and 23.5% in Mexico; and 22.6% in meaningfulness in the United States and 22.7% in Mexico (all P s < 0.001). In both Mexico and the United States, family strengths/adaptability uniquely predicted caregiver comprehensibility, manageability, and meaningfulness. Being overwhelmed with difficulties uniquely predicted comprehensibility in Mexico and manageability and meaningfulness in the United States., Conclusion: The development of family-systems interventions for PD caregivers to improve family strengths/adaptability and help families deal with difficulties may increase caregiver coping., Competing Interests: The authors report no conflicts of interest., (© 2020 The Authors. Aging Medicine published by Beijing Hospital and John Wiley & Sons Australia, Ltd.)

Objectives: The aim of this study was to examine potential racial/ethnic disparities in community integration for the 2 yrs after burn injury., Design: A sample of 1773 adults with burn injury from the Burn Model Systems database was used with data on community integration collected at discharge (preinjury recall), 6, 12, and 24 mos after discharge., Methods: Four sets of hierarchal linear models determined the most appropriate model for understanding racial/ethnic differences in Community Integration Questionnaire trajectories over time., Results: Data indicated a decrease in community integration between discharge and 6 mos, a slight increase between 6 mos and 1 yr, and then a plateau between 1 and 2 yrs. White individuals had higher community integration score trajectories over time than black (b = 0.53, P < 0.001) and Hispanic (b = 0.58, P < 0.001) individuals, and community integration scores were similar between black and Hispanic individuals (b = -0.05, P = 0.788). These racial/ethnic disparities remained after accounting for age, sex, total burned surface area, number of days in rehabilitation, and active range of motion deficits., Conclusions: Additional rehabilitation resources should be targeted to helping black and Hispanic individuals integrate back into their communities after burn injury.

Objective: Caregivers for individuals with Parkinson's disease (PD) can experience high burden, which underlies the importance of examining the needs of caregivers to be able to support them in the caregiving role. The current study aims to assess the relationships among PD symptoms and four measures of caregiver quality of life (QOL; i.e., personal and social activities, anxiety and depression, self-care, and strain)., Method: Data from 181 caregiver/care recipient dyads ( N = 362) were collected at a multidisciplinary PD clinic in a public, academic medical center in the southeastern United States at the time of the care recipient's first neuropsychological evaluation., Results: All PD symptoms were positively correlated with each other, as were all forms of caregiver QOL, and all PD symptoms were associated with each measure of caregiver QOL. A series of regressions suggested that demographics and PD symptoms predicted all four types of caregiver QOL, explaining 33% of the variance in caregiver personal and social activities, 24% in anxiety and depression, 28% in self-care, and 36% in strain. Female caregivers and those who provided care to male care recipients generally had worse QOL. Greater PD-related symptoms including difficulties with mobility, decreased emotional well-being, and greater nonmotor functioning impairment were unique predictors of reduced caregiver QOL., Conclusions: PD symptoms are robustly related to caregiver QOL, with mobility and nonmotor symptoms as the primary drivers of this relationship. Interventions for PD caregivers should include strategies for managing mobility and nonmotor symptoms, as well as their QOL effects on caregivers. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Background: The 3P model proposes that predisposing, precipitating, and perpetuating factors all play a role in sleep disturbance., Objective: The purpose of the current study is to investigate social determinants of sleep disturbance by applying the 3P model to a safety-net primary care setting, specifically by evaluating the role of classism and unmet needs as precipitating factors for sleep disturbance, and anxiety as a perpetuating factor for sleep disturbance., Methods: Participants (N = 210) were a convenience sample of racially/ethnically diverse adults over the age of 18 (age M = 44.7 years) recruited from a safety-net primary care clinic in an urban area. The study employed a cross-sectional design. Participants completed a survey assessing sleep disturbances, anxiety, unmet needs, classism, social support, and a researcher-generated demographic form., Results and Conclusions: The unmet need for affordable long-term housing and greater experiences of classism were associated with more sleep disturbance, suggesting that both acted as precipitating factors. In a structural equation model with adequate fit indices, anxiety mediated the relationships with sleep disturbance for both the unmet need for affordable long-term housing and classism, suggesting that it serves as a perpetuating factor. Medical providers are recommended to explore these potential needs in safety-net primary care when patients present with sleep disturbance or anxiety. Assisting with connections to long-term housing and helping patients counteract and cope with classist discrimination may be effective in improving sleep in safety-net primary care., (© The Author(s) 2019. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

This study examined relationships among wellness behaviors, physical health conditions, mental health, health insurance, and access to care among a sample of 317 lesbian, gay, bisexual, and transgender (LGBT) adults. Participants completed a web-administered survey from May 2013 to April 2014. Of the sample, 41.6% of the participants reported having one or more health conditions. Most participants (92.1%) reported access to a health care facility and current health insurance coverage (84.9%), though 24.9% of those with health insurance reported being incapable of paying the copayments. Physical health conditions, age, and self-esteem explained 24% of the variance in engagement in wellness behaviors; older age, a greater number of health conditions, higher self-esteem, possession of health insurance, and ability to access to care were associated with increased wellness behaviors. Providing affordable insurance coverage, improving access to care, and properly treating mental health in LGBT individuals could improve wellness behaviors., Competing Interests: The authors declare that they have no conflicts of interest., (Copyright © 2020 Richard S. Henry et al.)

Only scant literature has focused on social support in Parkinson's disease (PD) caregivers, and no studies to date have examined resilience in this population, despite both variables having been shown to be important in other caregiving populations. As a result, the purpose of the current study was to construct and validate a theoretical structural equation model whereby social support is associated with higher levels of resilience in PD caregivers and increased resilience is related to decreased mental health symptoms. Two hundred fifty three PD caregivers from two clinics in the United States and Mexico completed self-report measures of these constructs. Results suggested that the hypothesized pattern was robustly supported with the structural equation model showing generally good fit indices. Higher levels of social support were associated with increased resilience, which in turn was associated with reduced mental health symptoms. Resilience partially mediated social support's effect on mitigating mental health symptoms. The model explained 11% of the variance in resilience and 35% in mental health symptoms. These findings have implications for future research on the development and tailoring of interventions to improve social support, resilience, and mental health in PD caregivers., Competing Interests: The authors report no conflicts of interest., (Copyright © 2020 Carmen M. Tyler et al.)

Objective: The minority stress model and much research based upon it tend to adopt and reinforce a deficit-based approach. This study created and initially validated the minority strengths model, which by contrast outlines how personal and collective strengths in minority populations create resilience and positive mental and physical health., Materials and Method: A sample of 317 lesbian, gay, bisexual, transgender, and queer individuals from diverse racial/ethnic backgrounds completed a national online survey., Results: A minority strengths path model was generated with statistically significant paths and good fit indices, including all possible significant indirect effects. The model explained 16.8% of the variance in identity pride, 19.7% in self-esteem, 32.9% in resilience, 41.6% in mental health, and 13.0% in positive health behaviors., Conclusions: The minority strengths model holds promise to stimulate research on the personal and collective strengths of minority populations and the ways in which strengths generate resilience and positive mental and physical health., (© 2019 Wiley Periodicals, Inc.)