Browsing by Author "Wurz, Amanda"

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    A proof-of-concept sub-study exploring feasibility and preliminary evidence for the role of physical activity on neural activity during executive functioning tasks among young adults after cancer treatment
    (2021-08-04) Wurz, Amanda; Ayson, Gladys; Smith, Andra M.; Brunet, Jennifer
    Abstract Background Executive functioning (EF) deficits are troubling for adolescents and young adults (AYAs) after cancer treatment. Physical activity (PA) may enhance neural activity underlying EF among older adults affected by cancer. Establishing whether PA enhances neural activity among AYAs is warranted. As part of a two-arm, mixed-methods pilot randomized controlled trial (RCT), this proof-of-concept sub-study sought to answer the following questions: (1) is it feasible to use neuroimaging with EF tasks to assess neural activity changes following a 12-week PA intervention? And (2) is there preliminary evidence that a 12-week PA intervention enhances neural activity among AYAs after cancer treatment? Methods AYAs in the pilot RCT were approached for enrollment into this sub-study. Those who were eligible and enrolled, completed functional magnetic resonance imaging (fMRI) with EF tasks (letter n-back, Go/No Go) pre- and post-PA intervention. Sub-study enrollment, adherence to scheduled fMRI scans, outliers, missing data, and EF task performance data were collected. Data were analyzed with descriptive statistics, blood oxygen level dependent (BOLD) analyses, and paired sample t-tests. Results Nine eligible participants enrolled into this sub-study; six attended scheduled fMRI scans. One outlier was identified and was subsequently removed from the analytical sample. Participants showed no differences in EF task performance from pre- to post-PA intervention. Increases in neural activity in brain regions responsible for motor control, information encoding and processing, and decision-making were observed post-PA intervention (p < 0.05; n = 5). Conclusions Findings  show that fMRI scans during EF tasks detected neural activity changes (as assessed by the BOLD signal) from pre- to post-PA intervention. Results thus suggest future trials confirming that PA enhances neural activity underlying EF are needed, though feasibility issues require careful consideration to ensure trial success. Trial registration clinicaltrials.gov, NCT03016728. Registered January 11, 2017, clinicaltrials.gov/ct2/show/NCT03016728.
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    Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial
    (2022-10-28) Thombs, Brett D.; Levis, Brooke; Carrier, Marie-Eve; Dyas, Laura; Nordlund, Julia; Tao, Lydia; Aguila, Kylene; Bourgeault, Angelica; Konrad, Violet; Sauvé, Maureen; Connolly, Kerri; Henry, Richard S.; Østbø, Nora; Levis, Alexander W.; Kwakkenbos, Linda; Malcarne, Vanessa L.; El-Baalbaki, Ghassan; Hudson, Marie; Wurz, Amanda; Culos-Reed, S. N.; Platt, Robert W.; Benedetti, Andrea
    Abstract 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.
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    EXERCISE in pediatric autologous stem cell transplant patients: a randomized controlled trial protocol
    (BioMed Central, 2012-09-10) Khan, Faisal M.; Chamorro-Vina, Carolina; Culos-Reed, S. Nicole; Guilcher, Gregory M.T.; Mazil, Karen; Schulte, Fiona S. M.; Wurz, Amanda; Williamson, Tanya; Reimer, Raylene A.
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    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
    (2023-03-10) Wurz, Amanda; McLaughlin, Emma; Hughes, Kimberly; Ellis, Kelsey; Chen, Amy; Cowley, Lauren; Molina, Heather; Duchek, Delaney; Eisele, Maximilian; Culos-Reed, S. N.
    Abstract 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; $$\eta_{p}{}^{2}s=0.124-0.292$$ η p 2 s = 0.124 - 0.292 ). No other significant changes were observed (all p> 0.050;  $$\eta_{p}{}^{2}s=0.005-0.115$$ η p 2 s = 0.005 - 0.115 ). 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
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    Exploring the feasibility and acceptability of a mixed-methods pilot randomized controlled trial testing a 12-week physical activity intervention with adolescent and young adult cancer survivors
    (2019-12-20) Wurz, Amanda; Brunet, Jennifer
    Abstract Background Adolescent and young adult (AYA) cancer survivors (i.e. individuals diagnosed with cancer between 15 and 39 years and who completed treatment) may benefit from physical activity. Yet, few researchers have explored the effects of physical activity on physical and psychological outcomes among AYA cancer survivors. A pilot study exploring the feasibility and acceptability of a physical activity intervention and proposed trial methods to inform a definitive randomized controlled trial (RCT) is therefore necessary to fill this gap. Methods A two-arm, mixed-methods pilot RCT was conducted. Participants were randomized to a wait-list control group or a 12-week physical activity intervention comprised of 4 weekly aerobic and strength training sessions (intervention group). Feasibility measures included: number of AYA cancer survivors referred/self-referred, eligible, and recruited, retention to the trial (i.e. assessment completion), adherence to the physical activity intervention, and percentage of missing data for baseline (week 0), mid- (week 6), and post-intervention assessments (week 12). The acceptability of trial methods (all participants) and the intervention (intervention group only) was assessed via qualitative interviews post-intervention. Results Over a 12-month period, 31 AYA cancer survivors were referred/self-referred and 16 were eligible and consented to participate. Retention to the trial was 94% and adherence to the physical activity intervention ranged from 50 to 92%. With the exception of the assessment of aerobic capacity and directly measured physical activity behaviour, there were no missing data. Participants generally reported being satisfied with the trial methods and intervention; however, issues related to delivery of the physical activity intervention were identified. Conclusions The methods and intervention piloted require modification and further pilot testing in advance of a definitive RCT. Recruitment strategies identifying a greater number of younger AYA cancer survivors who have different types of cancers and who lack motivation to participate in physical activity-based studies should be explored. Refining the assessments of directly measured physical activity behaviour and aerobic capacity and incorporating behavioural support into the intervention may improve feasibility and acceptability. This study highlights the value of doing pilot work and provides critically useful data that can be used to refine studies seeking to assess causation and optimize physical activity interventions for AYA cancer survivors. Trial registration clinicaltrials.gov, NCT03016728. Registered January 11, 2017.
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    Physical activity behaviors and attitudes among women with an eating disorder: a qualitative study
    (2021-02-10) Brunet, Jennifer; Del Duchetto, Francis; Wurz, Amanda
    Abstract Background Physical activity (PA) is an integral part of healthcare for the general population and individuals with psychiatric disorders. However, PA is significantly more complex for and related to both healthy (e.g., reduced anxiety and depressive symptoms) and unhealthy outcomes (e.g., intrusive, repetitive thoughts that lead to abnormally high levels of PA) among women with an eating disorder (ED). Consequently, many healthcare professionals recommend abstinence from PA during ED treatment. Despite this, women may remain engaged in PA during ED treatment or resume PA shortly thereafter. Little has been done to understand women’s PA behaviors and attitudes and to explore how they integrate PA into their lives during and after ED treatment. Thus, this study sought to explore PA behaviors and attitudes among women with an ED. Methods Nine women who self-reported receiving an ED diagnosis participated in semi-structured interviews, which were transcribed and analysed thematically. Results Six interrelated themes were constructed to represent participants’ PA experiences: PA as a lifestyle, PA can be beneficial, How I feel when I can’t do PA, Being cautious about PA, Reactions to healthcare professionals’ practice of recommending abstinence from PA during ED treatment, and PA programming thoughts. Conclusions Overcoming dysfunctional PA behaviors (e.g., engaging in abnormally high levels of PA) and attitudes (e.g., associating PA with caloric expenditure) can be a long and complicated journey for women with an ED. Nevertheless, women with an ED want PA to be integrated into their ED treatment protocol for two key reasons, namely to accrue the benefits associated with PA and to learn how to engage in PA in adaptive and healthy ways.
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    Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews
    (2024-01-27) Wurz, Amanda; Ellis, Kelsey; Nordlund, Julia; Carrier, Marie-Eve; Cook, Vanessa; Gietzen, Amy; Adams, Claire; Nassar, Elsa-Lynn; Rice, Danielle B.; Fortune, Catherine; Guillot, Genevieve; Mieszczak, Tracy; Richard, Michelle; Sauve, Maureen; Thombs, Brett D.
    Abstract 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.
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    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
    (2021-11-27) Nordlund, Julia; Henry, Richard S.; Kwakkenbos, Linda; Carrier, Marie-Eve; Levis, Brooke; Nielson, Warren R.; Bartlett, Susan J.; Dyas, Laura; Tao, Lydia; Fedoruk, Claire; Nielsen, Karen; Hudson, Marie; Pope, Janet; Frech, Tracy; Gholizadeh, Shadi; Johnson, Sindhu R.; Piotrowski, Pamela; Jewett, Lisa R.; Gordon, Jessica; Chung, Lorinda; Bilsker, Dan; Levis, Alexander W.; Turner, Kimberly A.; Cumin, Julie; Welling, Joep; Fortuné, Catherine; Leite, Catarina; Gottesman, Karen; Sauve, Maureen; Rodríguez-Reyna, Tatiana S.; Larche, Maggie; van Breda, Ward; Suarez-Almazor, Maria E.; Wurz, Amanda; Culos-Reed, Nicole; Malcarne, Vanessa L.; Mayes, Maureen D.; Boutron, Isabelle; Mouthon, Luc; Benedetti, Andrea; Thombs, Brett D.
    Abstract 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
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    Yoga for Children and Adolescents Affected by Cancer or Blood Disease
    (2021-07-12) Ellis, Kelsey; Culos-Reed, Nicole; Sung, Lillian; Schulte, Fiona; Wurz, Amanda
    Children and adolescents (≤18 years of age) affected by cancer or blood disease face significant negative effects due to their disease and treatments. Yoga is one strategy that has been highlighted as safe, feasible, and potentially beneficial in experimental studies for this population. However, significant gaps and limitations exist in the current evidence and practice. First, efforts to collate a growing body of experimental evidence reporting on the effects of yoga are scarce, leaving the breadth of available evidence, the possible effects of yoga, and gaps and limitations in the evidence unknown. Second, despite the potential benefits of yoga, there are relatively few programs being delivered. Moving evidence to practice may be fostered by gathering feedback from key stakeholders, including the yoga instructors - who play a critical role in the safe and effective delivery of these programs. Therefore, the studies comprising this thesis sought to lay a foundation for future research and practice by summarizing the evidence to date reporting on the effects of yoga, and exploring yoga instructors’ lived experiences preparing for and facilitating yoga, for children and adolescents affected by cancer or blood disease. First, a systematic review was conducted wherein eight electronic databases and one trial registry were searched for experimental articles reporting on the effects of yoga for children and adolescents affected by cancer or blood disease. Results were summarized narratively. Across the eleven included studies, wide variability in the literature exists, and while yoga may promote benefits, several limitations in the current evidence were identified. Second, an interpretive description study was conducted via semi-structured interviews with fourteen yoga instructors who had experience facilitating yoga for this population. Data were analyzed using principles of interpretive description and thematic analysis. Findings from this interpretive description study highlight limitations in the yoga instructor training, and the necessity of prioritizing safe, effective, and accessible yoga delivery. Collectively, the studies in this thesis offer important foundational research and practical information, support the continued study and use of yoga as a supportive care resource for children and adolescents affected by cancer or blood disease.
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    Yoga for Pediatric Cancer Out-Patients
    (2013-12-05) Wurz, Amanda; Culos-Reed, S. Nicole
    The aggressive treatments necessary for survival in pediatric oncology are associated with adverse psychosocial and physical side effects. Physical activity (PA) has been shown to be a safe and effective strategy to positively impact the sequelae of cancer and its treatments. Although there are many types of PA, yoga is increasingly being recognized as a beneficial component of care. The objectives of this 12-week theory-based yoga intervention were to: (i) determine the feasibility and impact on health-related quality of life (HRQL); (ii) explore the potential benefits on fatigue, select fitness indices and PA behaviour; and, (iii) determine the influence on theory of planned behaviour (TPB) factors in a mixed-cancer sample of pediatric out-patients. The results provide preliminary support for the feasibility and efficacy of yoga, as well as support the utility of the TPB as framework to build and evaluate interventions for pediatric cancer out-patients.