Describing and exploring physical activity experiences among adults with cancer during the COVID-19 pandemic: a mixed-methods survey study.

Understanding if (and how) adults with cancer perceived their physical activity (PA) levels have changed (or not) since the COVID-19 pandemic and why this may have occurred is important. Given current gaps in knowledge, the purpose of this study was to explore PA experiences among adults with cancer amidst the COVID-19 pandemic. Individuals were eligible if they were currently ≥19 years of age, had been diagnosed with cancer ≥18 years of age, and were living in Canada. 113 adults affected by cancer (Mage = 61.9 ± 12.7 years; 68% female) completed the survey which asked closed- and open-ended questions about PA levels and PA engagement experiences. Most participants (n = 76, 67.3%) were not meeting PA guidelines, and reported engaging in, on average, 89.2 ± 138.2 minutes per week of moderate-to-vigorous PA. Participants indicated their PA declined (n = 55, 38.7%), did not change (n = 40, 35.4%), or increased (n = 18, 15.9%) since the start of the pandemic. Participants described their changed PA as due to public health restrictions, lowered motivation during the pandemic, or cancer- and treatment-related effects. For those engaging in similar or greater PA, online home-based and outdoor PA were shared as main forms of PA. Findings suggest PA behavior change support and ongoing access to online, home-based and outdoor PA options will be required as pandemic restrictions ease in this population.

Describing Supportive Care Programming Access and Comfort Gathering through the COVID-19 Pandemic: An Observational Mixed Methods Study with Adults Affected by Cancer.

Supportive care programming helps many adults affected by cancer manage concerns related to their disease. Public health restrictions imposed by the COVID-19 pandemic have undoubtedly changed the nature of supportive care programming delivery. Yet, access to supportive care programming and comfort gathering through the pandemic are unknown. As a first step towards informing ongoing supportive care programming for adults affected by cancer, this observational, mixed methods study described supportive care programming access through the COVID-19 pandemic and comfort returning to in-person supportive care programming as restrictions eased. Adults affected by cancer (n = 113; mean age = 61.9 ± 12.7 years; 68% female) completed an online survey, and descriptive statistics were computed. A purposeful sample of survey participants (n = 12; mean age = 58.0 ± 14.5 years; 58% female) was subsequently recruited to complete semi-structured interviews. Interviews were analyzed using reflexive thematic analysis. Less than half (41.6%) of the survey sample reported accessing supportive care programming during the pandemic, and of those who had accessed supportive care programming, most (65.6%) perceived similar or greater access than pre-pandemic. During interviews, participants described the ways online delivery enhanced their access and reduced barriers to supportive care programming. However, physical activity programming was described as challenging to navigate online. With restrictions easing, most of the survey sample (56.6%) reported being apprehensive about returning to in-person supportive care programming and identified the protocols that would make them feel safe to gather. During interviews, participants recounted struggling to balance their need for social connection with their health and safety. This study provides evidence to inform supportive care programming for adults affected by cancer through the COVID-19 pandemic. Findings suggest online delivery can enhance access to some types of supportive care programming for some adults affected by cancer, and that efforts are needed to ensure all adults affected by cancer feel comfortable gathering in-person.

Exploring research team members' and trial participants' perceptions of acceptability and implementation within one videoconference-based supportive care program for individuals affected by systemic sclerosis during COVID-19: a qualitative interview study.

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 Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Program, a videoconference-based supportive care program, was designed to protect and enhance mental health in individuals affected by systemic sclerosis (commonly known as scleroderma) with at least mild anxiety symptoms during the COVID-19 pandemic. A trial was conducted to evaluate the SPIN-CHAT Program, and results were generally positive. However, important gaps in knowledge remained. Specifically, research team members' and participants' perceptions of SPIN-CHAT Trial acceptability (including satisfaction) and factors impacting implementation of the SPIN-CHAT Program had not yet been explored. To fill this gap, we conducted one-on-one, videoconference-based, semi-structured interviewed with 22 research team members and 30 purposefully recruited trial participants. Interviews sought to gain insights into research team members' and trial participants' experiences within the SPIN-CHAT Program, delivery preferences, and aspects that were/were not beneficial. Findings suggest research team members and participants valued the SPIN-CHAT Program and found the trial to be acceptable. Results also highlight important factors to consider when designing, developing, and/or refining videoconference-based supportive care programs.

A qualitative interview study exploring the psychological health impacts of the SPIN-CHAT program among people with systemic sclerosis at the onset of COVID-19: perceptions of trial participants and research team members.

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.

"I feel like my body is broken": exploring the experiences of people living with long COVID.

PURPOSE: Long COVID, an illness affecting a subset of individuals after COVID-19, is distressing, poorly understood, and reduces quality of life. The objective of this sub-study was to better understand and explore individuals' experiences with long COVID and commonly reported symptoms, using qualitative data collected from open-ended survey responses. METHODS: Data were collected from adults living with long COVID who participated in a larger observational online survey. Participants had the option of answering seven open-ended items. Data from the open-ended items were analyzed following guidelines for reflective thematic analysis. RESULTS: From 213 participants who were included in the online survey, 169 participants who primarily self-identified as women (88.2%), aged 40-49 (33.1%), who had been experiencing long COVID symptoms for ≥ 6 months (74%) provided open-ended responses. Four overlapping and interconnected themes were identified: (1) Long COVID symptoms are numerous and wearing, (2) The effects of long COVID are pervasive, (3) Physical activity is difficult and, in some cases, not possible, and (4) Asking for help when few are listening, and little is working. CONCLUSION: Findings reaffirm prior research, highlighting the complex nature of long COVID. Further, results show the ways individuals affected by the illness are negatively impacted and have had to alter their daily activities. Participants recounted the challenges faced when advocating for themselves, adapting to new limitations, and navigating healthcare systems. The varied relapsing-remitting symptoms, unknown prognosis, and deep sense of loss over one's prior identity suggest interventions are needed to support this population.

The Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program: protocol for a two-arm parallel partially nested randomized controlled feasibility trial with progression to full-scale trial.

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.

Current Evidence and Directions for Future Research in eHealth Physical Activity Interventions for Adults Affected by Cancer: Systematic Review.

BACKGROUND: Physical activity (PA) interventions can increase PA and improve well-being among adults affected by cancer; however, most adults do not meet cancer-specific PA recommendations. Lack of time, facility access, and travel distances are barriers to participation in PA interventions. eHealth technologies may address some of these barriers, serving as a viable way to promote PA behavior change in this population. However, no review from July 2018 has synthesized available evidence across eHealth and cancer types or examined the use of behavioral theory and behavior change techniques (BCTs), leaving important gaps in knowledge. OBJECTIVE: This review aims to provide a comprehensive, updated overview of evidence on eHealth PA interventions for adults with cancer by describing the current state of the literature, exploring associations between intervention characteristics and effectiveness, and identifying future research needs. METHODS: MEDLINE, Embase, CINAHL, SportDiscus, Scopus, and CENTRAL were searched for eHealth PA interventions for adults affected by cancer. Study selection and data extraction were performed in duplicate, with consultation from the senior author (NCR). BCT coding, risk of bias, and completeness of reporting were performed using standardized tools. Results were summarized via narrative synthesis and harvest plots. Weight analyses were conducted to explore the associations between intervention characteristics and effectiveness. RESULTS: A total of 71 articles (67 studies) involving 6655 participants (mean age 56.7 years, SD 8.2) were included. Nearly 50% (32/67) of the articles were published after July 2018. Significant postintervention PA increases were noted in 52% (35/67) of the studies, and PA maintenance was noted in 41% (5/12) of the studies that included a follow-up. Study duration, primary objectives, and eHealth modality (eg, websites, activity trackers, and SMS text messaging) varied widely. Social cognitive theory (23/67, 34%) was the most used theory. The mean number of BCTs used across the studies was 13.5 (SD 5.5), with self-monitoring, credible sources, and goal setting being used in >90% of studies. Weight analyses showed the greatest associations between increased PA levels and PA as a primary outcome (0.621), interventions using websites (0.656) or mobile apps (0.563), interventions integrating multiple behavioral theories (0.750), and interventions using BCTs of problem solving (0.657) and action planning (0.645). All studies had concerns with high risk of bias, mostly because of the risk of confounding, measurement bias, and incomplete reporting. CONCLUSIONS: A range of eHealth PA interventions may increase PA levels among adults affected by cancer, and specific components (eg, websites, use of theory, and action planning) may be linked to greater effectiveness. However, more work is needed to ascertain and optimize effectiveness, measure long-term effects, and address concerns with bias and incomplete reporting. This evidence is required to support arguments for integrating eHealth within PA promotion in oncology.

Effects of a multi-faceted education and support programme on anxiety symptoms among people with systemic sclerosis and anxiety during COVID-19 (SPIN-CHAT): a two-arm parallel, partially nested, randomised, controlled trial.

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.