An Evaluation of Racial and Ethnic Representation in Research Conducted with Young Adults Diagnosed with Cancer: Challenges and Considerations for Building More Equitable and Inclusive Research Practices.

The psychosocial outcomes of adolescents and young adults (AYAs) diagnosed with cancer are poorer compared to their peers without cancer. However, AYAs with cancer from diverse racial and ethnic groups have been under-represented in research, which contributes to an incomplete understanding of the psychosocial outcomes of all AYAs with cancer. This paper evaluated the racial and ethnic representation in research on AYAs diagnosed with cancer using observational, cross-sectional data from the large Young Adults with Cancer in Their Prime (YACPRIME) study. The purpose was to better understand the psychosocial outcomes for those from diverse racial and ethnic groups. A total of 622 participants with a mean age of 34.15 years completed an online survey, including measures of post-traumatic growth, quality of life, psychological distress, and social support. Of this sample, 2% (n = 13) of the participants self-identified as Indigenous, 3% (n = 21) as Asian, 3% (n = 20) as "other," 4% (n = 25) as multi-racial, and 87% (n = 543) as White. A one-way ANOVA indicated a statistically significant difference between racial and ethnic groups in relation to spiritual change, a subscale of post-traumatic growth, F(4,548) = 6.02, p < 0.001. Post hoc analyses showed that those under the "other" category endorsed greater levels of spiritual change than those who identified as multi-racial (p < 0.001, 95% CI = [2.49,7.09]) and those who identified as White (p < 0.001, 95% CI = [1.60,5.04]). Similarly, participants that identified as Indigenous endorsed greater levels of spiritual change than those that identified as White (p = 0.03, 95% CI = [1.16,4.08]) and those that identified as multi-racial (p = 0.005, 95% CI = [1.10,6.07]). We provided an extensive discussion on the challenges and limitations of interpreting these findings, given the unequal and small sample sizes across groups. We concluded by outlining key recommendations for researchers to move towards greater equity, inclusivity, and culturally responsiveness in future work.

The association of resilience and positive mental health in systemic sclerosis: A Scleroderma Patient-centered Intervention Network (SPIN) cohort cross-sectional study.

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.

Yoga Therapy as an Intervention to Improve Patient-Reported Outcomes Among Adults After Treatment for Cancer: Preliminary Findings From a Trial Using Single-Subject Experimental Design.

BACKGROUND: Cancer is a chronic condition associated with a substantial symptom burden, which can impair recovery after treatment. Investigating interventions with potential to improve self-reported disease and/or treatment effects-known as patient-reported outcomes (PROs)-is paramount to inform cancer care. The objective of this study was to evaluate the effects of a yoga therapy (YT) intervention on key PROs (ie, cancer-related fatigue, anxiety, cognitive function, depression, stress, quality of life [QoL]) among adults after treatment for cancer. METHODS: Data from 20 adults (Mage = 55.74 years, 85% female; Mtime since diagnosis = 2.83 years) who had completed treatment for cancer were analyzed for this study. In this single-subject exploratory experimental study, the YT intervention comprised a 1:1 YT session (ie, 1 participant with 1 yoga therapist) followed by 6 weekly small (ie, 2-3 participants) group YT sessions. Group sessions were facilitated by the same yoga therapist who delivered participants' 1:1 session to ensure an in-depth personalized approach. PROs were assessed before (ie, pre-intervention) and after the 1:1 YT session (ie, during the intervention), as well as after the last group YT session (ie, post-intervention). Hierarchical linear modeling was used to analyze the data. RESULTS: Participants showed improvements in cancer-related fatigue, state anxiety, trait anxiety, perceived cognitive impairments, impacts of perceived cognitive impairments on QoL, and 1 dimension of QoL (ie, functional wellbeing) over time. Notably, cancer-related fatigue and state anxiety increased immediately after the 1:1 session, but showed greater improvements over time afterward (ie, during the intervention phase). No changes were observed for the remaining PROs. CONCLUSION: Although results require confirmation in future trials, this study highlights the importance of continuing to investigate YT as an intervention to enhance important PROs (ie, cancer-related fatigue and state anxiety) after treatment for cancer. More research is needed to identify additional beneficial effects and factors that influence participants' responses to 1:1 and group YT (ie, moderators and mediators). REGISTRATION NUMBER: ISRCTN64763228. DATE OF REGISTRATION: December 12, 2021. This trial was registered retrospectively. URL OF TRIAL REGISTRY RECORD: https://www.isrctn.com/ISRCTN64763228. PUBLISHED PROTOCOL: Brunet, J., Wurz, A., Hussien, J., Pitman, A., Conte, E., Ennis, J. K., . . . & Seely, D. (2022). Exploring the Effects of Yoga Therapy on Heart Rate Variability and Patient-Reported Outcomes After Cancer Treatment: A Study Protocol. Integrative Cancer Therapies, 21, 15347354221075576.

Describing and Exploring Coping Strategies among Those Diagnosed with Cancer as an Adolescent or Young Adult: A YACPRIME Study.

A greater understanding of how young people cope with a cancer diagnosis is needed in order to inform age-appropriate supportive care. This paper describes the coping strategies used and explores relationships between coping strategies and personal, medical, and psychological variables among young adults (YAs) diagnosed with cancer. YAs (n = 547, mean age = 34.05 ± 6.00 years) completed an online survey, including the Brief COPE and measures of psychological functioning. Descriptive statistics and bivariate correlations were computed. Acceptance, self-distraction, positive reframing, and planning were the most used coping strategies by this sample. There were small (r = -0.09) to large (r = 0.51) significant relationships between personal, medical, and psychological variables and selected coping strategies. Coping with a cancer diagnosis early in life remains poorly understood. Identifying additional correlates and exploring inter- and intrapersonal variation in coping strategy use is required.

Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews.

BACKGROUND: Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. METHODS: Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. RESULTS: Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. CONCLUSIONS: Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success.

Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success.

Experiences of young adults affected by cancer within an 8-week yoga intervention delivered by videoconference: a qualitative interview study.

BACKGROUND: Yoga may reduce negative cancer- and treatment-related effects and help improve a range of outcomes, including flexibility, mindfulness, and quality of life among adults affected by cancer. Yet there is little evidence for the role of yoga among young adults (18-39 years) affected by cancer. PURPOSE: The purpose of this study was to explore the experiences of young adults affected by cancer in an 8-week yoga intervention delivered by videoconference. METHODS: Young adults who were diagnosed with cancer between the ages of 18 and 39 years, at any stage of the cancer trajectory, who were living in Canada, and who completed an 8-week yoga intervention were approached to complete a semi-structured interview. A social constructivist paradigm was adopted. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis. RESULTS: Twenty-eight young adults (Mean age = 34.67 ± 5.11 years; n = 25 female) with varied cancer diagnoses participated. Participants' perspectives were represented across 6 themes: (1) I was juggling a number of challenges and changes throughout the yoga intervention; (2) I noticed some improvements in my mental and physical health; (3) I made time to discover new strategies to take care of myself; (4) I was able to see what my body is capable of; (5) I was held accountable and I appreciated that, and; (6) I was able to be around similar others in a safe (virtual) space. CONCLUSIONS: Findings suggest that an 8-week yoga intervention may offer some benefits for young adults affected by cancer. Self-care, self-compassion, mindfulness, feelings of physical competence, establishing a routine, and being around similar others were viewed as important components of the intervention and may have contributed to the benefits experienced. Findings underscore the potential utility of yoga as a supportive care intervention for young adults affected by cancer.

Young adults affected by cancer described changed physical and mental health after an 8-week yoga intervention delivered by videoconference.Taking time for oneself, practicing self-compassion and mindfulness, enhanced feelings of physical competence, and establishing a routine were important elements of the intervention.Young adults appreciated being around similar others (i.e., other young adults affected by cancer) and felt connected in this videoconference-based intervention.

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.

Rural-urban differences in distress, quality of life, and social support among Canadian young adult cancer survivors: A Young Adults with Cancer in Their Prime (YACPRIME) study.

PURPOSE: Geographic location plays a significant role in the health and wellbeing of those with cancer. This project explored the impact of rurality and social support on distress and quality of life in young adults (YAs) with cancer in Canada. METHODS: The current research analyzed data from the Young Adults with Cancer in Their Prime (YACPRIME) study. Participants completed measures of emotional distress (10-item Kessler Psychological Distress Scale), quality of life (12-item Short-form Health Survey), and social support (Medical Outcomes Study-Social Support Survey). Rural and urban-dwelling survivors were compared using MANOVAs. Bivariate analyses were conducted to explore associations between distress and social support. FINDINGS: Of the sample (N = 379), 26% identified their location as rural. Rural YA cancer survivors reported higher distress and worse physical health-related quality of life (HRQOL) than survivors from urban areas but similar levels of mental-health-related quality of life. Social support appeared to have a marginally greater effect on psychosocial outcomes for urban participants. All types of social support were associated with lower levels of distress. However, different types of social support were associated more strongly with distress depending on a participant's geography. CONCLUSIONS: Rural-dwelling YA cancer survivors experience significantly more distress and poorer physical HRQOL than urban-dwelling survivors. Different needs and preferences for social support may influence the psychological health of rural cancer survivors. Additional research is needed to determine how best to understand and address distress in rural YAs with cancer.

Making sense of the cancer journey: Pediatric cancer survivors' and their parents' autobiographical memories.

PURPOSE: Youth diagnosed with acute lymphoblastic leukemia (ALL) and their caregiver's experience a myriad of challenges in all domains of health that extend beyond treatment. Yet, little is known about how the cancer experience, and recollections associated with the experience, impact survivorship. We explored pediatric ALL survivors' and their caregivers' autobiographical memories of the cancer experience from diagnosis onwards. METHODS: Survivors of ALL, and one of their caregivers, were recruited through a local clinic. Survivors and their caregivers completed a demographic survey and semi-structured, private, one-on-one interviews. Demographic information were analyzed using descriptive statistics. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis at the level of the individual and dyad. RESULTS: Insights from survivors (N = 19; Mage = 15.3 years) and their caregivers (n = 19; Mage = 45.4 years) were captured. Analyses generated two themes contingent on role (i.e., survivor or caregiver): (1) It is hard to recall my cancer experience and (2) We did as much as we could to manage our child's cancer experience and two unified themes (present in both survivors and their caregivers): (3) It took a village to get through the cancer experience and (4) The cancer diagnosis and experience has had a lasting impact. CONCLUSIONS: Findings highlight the varied and long-lasting ways cancer impacts survivors of pediatric ALL and their caregivers. Survivors had difficultly remembering their experience or felt that information was withheld and were acutely aware of their caregiver's distress. Caregivers were cautious and intentionally limited the information they shared. IMPLICATIONS FOR CANCER SURVIVORS: Survivors desired to be included within, or told about, decisions related to their healthcare and were acutely aware of their caregiver's distress. Efforts should be made to communicate with survivors (from diagnosis onward) openly and to consider strategies to minimize the short- and long-term impacts of pediatric ALL among survivors and their caregivers.

Participant Bias in Community-Based Physical Activity Research: A Consistent Limitation?

Physical activity is a beneficial, yet complex, health behavior. To ensure more people experience the benefits of physical activity, we develop and test interventions to promote physical activity and its associated benefits. Nevertheless, we continue to see certain groups of people who choose not to, or are unable to, take part in research, resulting in "recruitment bias." In fact, we (and others) are seemingly missing large segments of people and are doing little to promote physical activity research to equity-deserving populations. So, how can we better address recruitment bias in the physical activity research we conduct? Based on our experience, we have identified 5 broad, interrelated, and applicable strategies to enhance recruitment and engagement within physical activity interventions: (1) gain trust, (2) increase community support and participation, (3) consider alternative approaches and designs, (4) rethink recruitment strategies, and (5) incentivize participants. While we recognize there is still a long way to go, and there are broader community and societal issues underlying recruitment to research, we hope this commentary prompts researchers to consider what they can do to try to address the ever-present limitation of "recruitment bias" and support greater participation among equity-deserving groups.

Physical activity and physical fitness assessments in adolescents and young adults diagnosed with cancer: a scoping review.

PURPOSE: This scoping review describes the assessment methodologies for physical activity (PA) and physical fitness assessments used in studies focusing on adolescents and young adults (AYAs) diagnosed with cancer. METHODS: A search of the literature was conducted in PubMed, CINAHL, Web of Science, and Cochrane Library following the PRISMA-ScR statement. A total of 34 studies were included in this review. RESULTS: PA was primarily assessed via self-reported questionnaires (30/34) either completed in-person (n = 17) or online (n = 13) at different time points and different stages along the cancer trajectory (i.e., from diagnosis onward). A total of 9 studies conducted a physical fitness assessment. CONCLUSIONS: PA and physical fitness measurements are key when trying to describe outcomes, assess for associations, track changes, measure intervention adherence, and test intervention efficacy and effectiveness. Considerable heterogeneity across studies was reported limiting the generation of formal recommendations or guidance for researchers, healthcare providers, and policy makers.

An Investigation of Social Status among Adolescents and Young Adults Who Have Been Diagnosed with Cancer in Canada.

BACKGROUND: Aims were to: (1) compare social status among AYAs diagnosed with cancer to a community population; (2) describe AYAs' change in employment/education status; and (3) examine predictors of social status. METHOD: Social status (i.e., education, employment, relationship status, and living arrangement) was captured from young adults diagnosed with cancer recruited via social media through a community-based organization from across Canada and randomly matched to a community sample by sex, age, province of residence, total household income and race/ethnicity at a ratio of 1:3. RESULTS: AYAs with cancer (N = 622) were an average of 4.45 (SD = 5.42) years from the completion of treatment and were less likely to be employed (χ2 = 96.35, p < 0.001) and more likely to be living at home with parents (χ2 = 17.00, p < 0.001). There were no differences in education or relationship status. Overall, 41% and 45% of AYAs reported quitting school or work, respectively. Non-metastatic disease (AOR 3.23, 95% CI 1.08-9.62), and better physical (AOR 1.07 95% CI 1.04-1.10) and mental quality of life (QOL)(AOR 1.06 95% CI 1.03-1.09), were associated with employment. Worse mental QOL (AOR 1.04 95% CI 1.01-1.07), less post-traumatic growth (AOR 1.01 95% CI 1.00-1.03), and social support (AOR 0.27, 95% CI 0.18-0.41) were associated with being single. Non-White race (AOR 3.19 95% CI 1.02-9.97) and less post-traumatic growth (AOR 0.97 95% CI 0.95-0.99) were associated with living with parents. CONCLUSIONS: AYAs diagnosed with cancer experience differences in attainment of employment and independent living compared to a community sample. These challenges may have implications for physical and mental QOL.

Exploring pain among young people who have completed treatment for acute lymphoblastic leukemia: experiences of youth and caregivers.

PURPOSE: Acute lymphoblastic leukemia (ALL) is the most common cancer diagnosed among individuals <14 years of age. The disease and its treatments are associated with negative side effects, including pain, which is both prevalent and distressing. Little is known about pain experiences in this population, which has slowed efforts to identify strategies to mitigate and cope with this adverse effect. This study sought to explore youth's and their caregiver's experiences with, and perspectives of, pain in the context of pediatric cancer treatment. METHODS: Youth and one of their caregivers were recruited through (omitted for peer review). Following completion of a demographic survey, youth and one of their caregivers were interviewed separately using a semi-structured, one-on-one interview guide. Demographic information was analyzed with descriptive statistics, and interviews were transcribed verbatim and analyzed using reflexive thematic analysis. RESULTS: Youth (n = 19; Mage = 15.3 years) and caregiver (n = 19; Mage = 45.4 years) perspectives informed 4 themes: (1) my pain experience is nuanced, multidimensional, and is changing over time; (2) the cancer experience has changed the way I experience and respond to pain; (3) I used strategies to manage pain, and not all of them worked; and (4) my pain experience was influenced by people around me. CONCLUSIONS: Findings extend prior work, suggesting that pain is common, distressing, multidimensional, and influenced by social context. Results highlight the number of ways in which youth and their caregivers attempt to manage their pain and factors influencing pain experiences. Greater efforts are needed to address pain during cancer treatment and survivorship.

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.

Exploring feasibility, perceptions of acceptability, and potential benefits of an 8-week yoga intervention delivered by videoconference for young adults affected by cancer: a single-arm hybrid effectiveness-implementation pilot study.

BACKGROUND: Young adults affected by cancer face physical and psychological challenges and desire online supportive care. Yoga can be delivered online and may improve physical and psychological outcomes. Yet, yoga has rarely been studied with young adults affected by cancer. To address this, an 8-week yoga intervention was developed, and a pilot study was deemed necessary to explore feasibility, acceptability, implementation, and potential benefits. METHODS: A mixed-methods, single-arm hybrid effectiveness-implementation pilot study evaluating the yoga intervention was conducted. Feasibility was assessed by tracking enrollment, retention, attendance, completeness of data, and adverse events. Acceptability was explored through interviews. Implementation metrics included training time, delivery resources, and fidelity. Potential effectiveness was evaluated by exploring changes in physical (i.e., balance, flexibility, range of motion, functional mobility) and psychological (i.e., quality of life, fatigue, resilience, posttraumatic growth, body image, mindfulness, perceived stress) outcomes at pre- (week 0), post- (week 8), and follow-up (week 16) time points. Data were analyzed with descriptive statistics, repeated measures analysis of variance, and content analysis. RESULTS: Thirty young adults participated in this study (recruitment rate = 33%). Retention to study procedures was 70%, and attendance ranged from 38 to 100%. There were little missing data (< 5%) and no adverse events. Though most participants were satisfied with the yoga intervention, recommendations for improvement were shared. Sixty study-specific training hours and > 240 delivery and assessment hours were accrued and fidelity was high. Functional mobility, flexibility, quality of life (energy/fatigue, social well-being), body image (appearance evaluation), mindfulness (non-reactivity), and perceived stress improved significantly over time (all p< 0.050; [Formula: see text]). No other significant changes were observed (all p> 0.050; [Formula: see text]). CONCLUSIONS: The yoga intervention may confer physical and psychological benefits, though intervention and study-specific modifications are required to improve feasibility and acceptability. Requiring study participation and providing greater scheduling flexibility could enhance recruitment and retention. Increasing the frequency of classes offered each week and offering more opportunities for participant interaction could improve satisfaction. This study highlights the value of doing pilot work and provides data that has directly informed intervention and study modifications. Findings could also be used by others offering yoga or supportive care by videoconference to young adults affected by cancer. TRIAL REGISTRATION: Not available-not registered.

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.

The physicAl aCtivity Counselling for young adult cancEr SurvivorS (ACCESS) trial: A protocol for a parallel, two-arm pilot randomized controlled trial.

BACKGROUND: Young adults aged 18-39 years commonly experience persistent side effects following cancer treatment that can impair their quality of life. Physical activity (PA) holds promise as a behavioral intervention to mitigate persistent side effects and improve quality of life. Yet, few young adults are active enough to incur these benefits and efforts to promote PA after cancer treatment ends are lacking. Therefore, we developed a novel theory-driven behavior change intervention to promote PA via videoconferencing technology in young adults who have completed cancer treatment, and are undertaking a pilot randomized controlled trial (RCT) to gather evidence to inform the design of a large, full-scale RCT. The specific aims of this parallel, two-arm pilot RCT are to: (1) assess intervention and trial protocol feasibility and acceptability; and (2) generate data on PA behavior. To promote transparency, improve reproducibility, and serve as a reference for forthcoming publication of results, we present the study protocol for this pilot RCT (version 7) within this paper. METHODS: Young adults who have completed cancer treatment are being recruited from across Canada. After informed consent is obtained and baseline assessments are completed, participants are randomized to the intervention group (i.e., a 12-week behavior change intervention delivered via videoconferencing technology by trained PA counsellors) or usual care group (i.e., no intervention). Several feasibility outcomes covering enrollment, allocation, follow-up, and analysis are tracked by study staff. Acceptability is assessed through interviews exploring participants' experiences, thoughts, and perspectives of the trial protocol (i.e., intervention and usual care groups), as well as participants' views of the intervention and its mode of delivery (i.e., intervention group only) and PA counsellors' experiences delivering the intervention. PA behavior is measured using accelerometers at baseline (pre-randomization), post-intervention, and at follow-up (24 weeks post-baseline). DISCUSSION: There are growing calls to develop interventions to support young adults' motivation to engage in PA and adopt an active lifestyle to improve their quality of life after cancer treatment ends. Real-time videoconferencing shows promise for disseminating behavior change interventions to young adults and addressing participation barriers. Considering the importance of establishing intervention and trial protocol feasibility and acceptability prior to evaluating intervention efficacy (or effectiveness), this pilot RCT is critical to understand how participants embrace, engage with, and complete the intervention and trial protocol. Indeed, these data will help to determine which refinements, if any, are required to the intervention and trial protocol (e.g., implementation approach, evaluation methods) prior to a large, full-scale RCT aiming to test the effects of the intervention on PA behavior. Additionally, the PA behavior data collected will be useful to inform the sample size calculation for a large, full-scale RCT. TRIAL REGISTRATION: The trial was registered with the ClinicalTrials.gov database (ID: NCT04163042) on November 14, 2019, prior to the start of the trial in February, 2021.