Search

Contains fulltext : 231157.pdf (Publisher’s version ) (Closed access) Objective: To support physical activity among people with systemic sclerosis (SSc; scleroderma), we sought to determine the (1) prevalence and importance of barriers and (2) likelihood of using possible facilitators. Methods: We invited 1,707 participants from an international SSc cohort to rate the (1) importance of 20 barriers (14 medical; 4 social or personal; 1 lifestyle; 1 environmental); and (2) likelihood of using 91 corresponding barrier-specific and 12 general facilitators. Results: Among 721 respondents, 13 barriers were experienced by ≥25% of participants, including 2 (fatigue, Raynaud's) rated 'important' or 'very important' by ≥50% of participants, 7 (joint stiffness and contractures, shortness of breath, gastrointestinal problems, difficulty grasping, pain, muscle weakness and mobility limitations, low motivation) by 26-50%, and 4 by 50% as 'likely' or 'very likely'. Conclusion: Medical-related physical activity barriers were common and considered important. Facilitators considered as most likely to be used involved adapting exercise, taking care of one’s body, keeping warm, and protecting skin. 11 p.

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). 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. 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. 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. 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 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.

Summary 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 Sclerodermie Quebec.

Objective To conduct a scoping review that identifies different nominal group technique (NGT) methods used to elicit items for health surveys, and their advantages and disadvantages. Study design and setting We conducted a comprehensive search process from database inception to July 22, 2019 in Medline, EMBASE, PsychInfo, CINAHL, Cochrane Central and Scopus without language restriction. We screened titles and abstracts. Data from potentially relevant articles were extracted by one reviewer and verified by a second reviewer, with disagreements resolved by consensus or a third reviewer. Results We included 57 studies, which used between 1 and 41 nominal groups that included between 2 and 30 participants per group. We grouped the 30 identified decision points for the NGT process into two stages common to most qualitative group methods [Research objectives; Group characteristics] and three stages related to the nominal groups themselves [Eliciting survey items; Refining survey elicited items from stage 3; Evaluating and selecting final survey items]. We discuss the advantages and disadvantages of each option in relation to specific study contexts. Conclusion Investigators should carefully consider their options for each of the identified decision points and document the reasons for their choices in their protocol to maximize validity and transparency.

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., Highlights • People with chronic diseases may experience high levels of fear due to COVID-19. • We examined factors associated with fears due to COVID-19 in an at-risk population. • We used the validated COVID-19 Fears Questionnaire for Chronic Medical Conditions. • Fears due to COVID-19 among people with SSc differed substantially by country. • Interference of breathing problems and financial adequacy were related to fears.

BackgroundNo studies have reported comparisons of mental health symptoms prior to and during COVID-19 in vulnerable populations. Objectives were to compare anxiety and depression symptoms among people with a pre-existing medical condition, the autoimmune disease systemic sclerosis (SSc; scleroderma), including continuous change scores, proportion with change ≥ 1 minimal clinically important difference (MCID), and factors associated with changes, including country.MethodsPre-COVID-19 Scleroderma Patient-centered Intervention Network Cohort data were linked to COVID-19 data collected April 9 to April 27, 2020. Anxiety symptoms were assessed with the PROMIS Anxiety 4a v1.0 scale (MCID = 4 points) and depression symptoms with the Patient Health Questionnaire-8 (MCID = 3 points). Multiple linear and logistic regression were used to assess factors associated with continuous change and change ≥ 1 MCID.FindingsAmong 435 participants (Canada = 98; France = 159; United Kingdom = 50; United States = 128), 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, adjusted scores from the United States and United Kingdom were 3.8 points (95% CI 1.7 to 5.9) and 2.9 points higher (95% CI 0.0 to 5.7); scores for Canada were not significantly different. Odds of increasing by ≥ 1 MCID were twice as high for the United Kingdom (2.0, 95% CI 1.0 to 4.2) and United States (1.9, 95% CI 1.1 to 3.2). Participants who used mental health services pre-COVID had adjusted increases 3.7 points (95% CI 1.7 to 5.7) less than other participants.InterpretationAnxiety symptoms, but not depression symptoms, increased dramatically during COVID-19 among people with a pre-existing medical condition. Increase was larger in the United Kingdom and United States than in Canada and France but substantially less for people with pre-COVID-19 mental health treatment.RESEARCH IN CONTEXTEvidence before this studyWe referred to a living systematic review that is evaluating mental health changes from pre-COVID-19 to COVID-19 by searching 7 databases, including 2 Chinese language databases, plus preprint servers, with daily updates (https://www.depressd.ca/covid-19-mental-health). As of June 13, 2020, only 5 studies had compared mental health symptoms prior to and during COVID-19. In 4 studies of university students, there were small increases in depression or general mental health symptoms but minimal or no increases in anxiety symptoms. A general population study from the United Kingdom reported a small increase in general mental health symptoms but did not differentiate between types of symptoms. No studies have reported changes from pre-COVID-19 among people vulnerable due to pre-existing medical conditions. No studies have compared mental health changes between countries, despite major differences in pandemic responses.Added value of this studyWe evaluated changes in anxiety and depression symptoms among 435 participants with the autoimmune condition systemic sclerosis and compared results from Canada, France, the United Kingdom, and the United States. To our knowledge, this is the first study to compare mental health symptoms prior to and during COVID-19 in any vulnerable population. These are the first data to document the substantial degree to which anxiety symptoms have increased and the minimal changes in depression symptoms among vulnerable individuals. It is also the first study to examine the association of symptom changes with country of residence and to identify that people receiving pre-COVID-19 mental health services may be more resilient and experience less substantial symptom increases than others.Implications of all the available evidenceAlthough this was an observational study, it provided evidence that vulnerable people with a pre-existing medical condition have experienced substantially increased anxiety symptoms and that these increases appear to be associated with where people live and, possibly, different experiences of the COVID-19 pandemic across countries. By comparing with evidence from university samples, which found that depression symptoms were more prominent, these data underline the need for accessible interventions tailored to specific needs of different populations. They also suggest that mental health treatments may help people to develop skills or create resilience, which may reduce vulnerability to major stressors such as COVID-19.

Objective: People with chronic medical conditions are at risk of complications and mortality during the COVID-19 outbreak. Understanding mental health implications, including effects of isolation and movement restrictions, should consider specific fears and level of fear experienced. No questionnaires or scales, however, have been developed for this purpose. We sought input from people living with the chronic autoimmune disease systemic sclerosis (SSc; scleroderma) on items for inclusion in a preliminary version of the COVID-19 Fears Questionnaire for Systemic Sclerosis, which we also adapted for a preliminary general version, the COVID-19 Fears Questionnaire for Chronic Medical Conditions.Methods: We solicited lists of general and disease-specific fears during COVID-19 from people with SSc via social media and postings by patient organizations. Respondents could provide between 1 and 10 fears via a Qualtrics survey. We used content analysis to generate initial item themes. Selection of items for inclusion, item content, and item wording were done iteratively via email discussion among research team members and the project’s patient advisory team. Items were then adapted for the general chronic diseases version.Results: A total of 121 respondents from 10 countries provided a mean and median of 4 item suggestions. The preliminary COVID-19 Fears Questionnaire for Systemic Sclerosis includes 16 items, and the general version includes 15 items.Conclusion: The COVID-19 Fears Questionnaire for Systemic Sclerosis will be validated via a cohort study, and other researchers are encouraged to validate the general version. Suggestions are made to facilitate rapid sharing of methods and results.

People with systemic sclerosis (scleroderma) face difficulties being physically active. This study identified physical activity barriers and facilitators experienced by people with scleroderma.We conducted nominal group technique sessions with scleroderma patients who shared physical activity barriers, barrier-specific facilitators, and general facilitators. Participants rated importance of barriers and likelihood of using facilitators from 0 to 10, and indicated whether they had tried facilitators. Barriers and facilitators across sessions were merged to eliminate overlap; edited by investigators, patient advisors, and clinicians; and categorized using qualitative content analysis.We conducted 9 sessions (Scleroderma patients reported many barriers related to health and medical aspects of scleroderma and several barriers in other categories. They reported facilitators to remain physically active despite the barriers.Implications for RehabilitationPeople with scleroderma experience difficulty being physically active due to the diverse and often severe manifestations of the disease, including involvement of the skin, musculoskeletal system, and internal organs.In addition to regular care of scleroderma-related symptoms, patients overcome many exercise challenges by selecting physical activities that are comfortable for them, adjusting the intensity and duration of activities, adapting activities, and using adapted equipment or other materials to reduce discomfort.Rehabilitation professionals should help people with scleroderma to tailor activity options to their capacity and needs when providing care and advice to promote physical activity.

Objective Contagious disease outbreaks and related restrictions can lead to negative psychological outcomes, particularly in vulnerable populations at risk due to pre-existing medical conditions. No randomised controlled trials (RCTs) have tested interventions to reduce mental health consequences of contagious disease outbreaks. The primary objective of the Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Trial is to evaluate the effect of a videoconference-based program on symptoms of anxiety. Secondary objectives include evaluating effects on symptoms of depression, stress, loneliness, boredom, physical activity, and social interaction. Methods The SPIN-CHAT Trial is a pragmatic RCT that will be conducted using the SPIN-COVID-19 Cohort, a sub-cohort of the SPIN Cohort. Eligible participants will be SPIN-COVID-19 Cohort participants without a positive COVID-19 test, with at least mild anxiety (PROMIS Anxiety 4a v1.0 T-score ≥ 55), not working from home, and not receiving current counselling or psychotherapy. We will randomly assign 162 participants to intervention groups of 7 to 10 participants each or waitlist control. We will use a partially nested RCT design to reflect dependence between individuals in training groups but not in the waitlist control. The SPIN-CHAT Program includes activity engagement, education on strategies to support mental health, and mutual participant support. Intervention participants will receive the 4-week (3 sessions per week) SPIN-CHAT Program via videoconference. The primary outcome is PROMIS Anxiety 4a score immediately post-intervention. Ethics and dissemination The SPIN-CHAT Trial will test whether a brief videoconference-based intervention will improve mental health outcomes among at-risk individuals during contagious disease outbreak., Highlights • No RCTs have tested mental health interventions in contagious disease outbreaks. • People with scleroderma face fear and isolation during COVID-19. • SPIN-CHAT is designed to improve mental health in SSc patients during COVID-19. • SPIN-CHAT provides 12 group sessions over 4 weeks. • The SPIN-CHAT trial will randomize 162 participants to intervention or waitlist.

PurposeTo identify physical activity barriers and facilitators experienced by people with systemic sclerosis (SSc; scleroderma).Materials and MethodsWe conducted nominal group technique sessions with SSc patients who shared barriers to physical activities, barrier-specific facilitators, and general facilitators. Participants rated importance of barriers and likelihood of using facilitators from 0-10, and indicated whether they had tried facilitators. Barriers and facilitators across sessions were subsequently merged to eliminate overlap; edited based on feedback from investigators, patient advisors, and clinicians; and categorized.ResultsWe conducted nine sessions (n=41 total participants) and initially generated 181 barriers, 457 barrier-specific facilitators, and 20 general facilitators. The number of consolidated barriers (barrier-specific facilitators in parentheses) for each category were: 14 (61) for health and medical; 4 (23) for social and personal; 1 (3) for time, work, and lifestyle; and 1 (4) for environmental. There were 12 consolidated general facilitators. The consolidated items with ≥ 1/3 of participants’ ratings ≥ 8 were: 15 barriers, 69 barrier-specific facilitators, and 9 general facilitators.ConclusionsPeople with SSc reported many barriers related to health and medical aspects of SSc and several barriers in other categories. They reported facilitators to remain physically active despite the barriers.Implications for RehabilitationPeople with scleroderma experience difficulty being physically active due to the diverse and often severe manifestations of the disease, including involvement of the skin, musculoskeletal system, and internal organs.In addition to regular care of scleroderma-related symptoms, patients overcome many exercise challenges by selecting physical activities that are comfortable for them, adjusting the intensity and duration of activities, adapting activities, and using adapted equipment or other materials to reduce discomfort.Rehabilitation professionals should help people with scleroderma to tailor activity options to their capacity and needs when providing care and advice to promote physical activity.

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 (χ2(35) = 311.2, p, Highlights • People with chronic diseases are at risk if infected with the COVID-19 virus. • The COVID-19 Fears Questionnaire assesses fear among people with medical conditions. • 121 people with scleroderma from 10 countries provided item suggestions. • Validity was supported in a sample of 787 scleroderma patients. • The questionnaire is available for use in studies during the COVID-19 crisis.