Browsing by Author "Nordlund, Julia"

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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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    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