Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program.

Cohort multiple RCT Feasibility trial Internet intervention Scleroderma Self-management Systemic sclerosis

Journal

Pilot and feasibility studies
ISSN: 2055-5784
Titre abrégé: Pilot Feasibility Stud
Pays: England
ID NLM: 101676536

Informations de publication

Date de publication:
26 Feb 2022
Historique:
received: 10 05 2021
accepted: 27 01 2022
entrez: 27 2 2022
pubmed: 28 2 2022
medline: 28 2 2022
Statut: epublish

Résumé

The Scleroderma Patient-centered Intervention Network (SPIN) developed an online self-management program (SPIN-SELF) designed to improve disease-management self-efficacy in people with systemic sclerosis (SSc, or scleroderma). The aim of this study was to evaluate feasibility aspects for conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF Program. This feasibility trial was embedded in the SPIN Cohort and utilized the cohort multiple RCT design. In this design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about the trial. Participants in the intervention arm are informed and provide consent, but not the control group. Forty English-speaking SPIN Cohort participants from Canada, the USA, or the UK with low disease-management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale [SEMCD] score ≤ 7) who were interested in using an online self-management program were randomized (3:2 ratio) to be offered the SPIN-SELF Program or usual care for 3 months. Program usage was examined via automated usage logs. User satisfaction was assessed with semi-structured interviews. Trial personnel time requirements and implementation challenges were logged. Of 40 SPIN Cohort participants randomized, 26 were allocated to SPIN-SELF and 14 to usual care. Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly, except that two participants with SEMCD scores > 7 (scores of 7.2 and 7.3, respectively) were included, which was caused by a system programming error that rounded SEMCD scores. Of 26 SPIN Cohort participants offered the SPIN-SELF Program, only 9 (35%) consented to use the program. Usage logs showed that use of the SPIN-SELF Program was low: 2 of 9 users (22%) logged into the program only once (median = 3), and 4 of 9 (44%) accessed none or only 1 of the 9 program's modules (median = 2). The results of this study will lead to substantial changes for the planned full-scale RCT of the SPIN-SELF Program that we will incorporate into a planned additional feasibility trial with progression to a full-scale trial. These changes include transitioning to a conventional RCT design with pre-randomization consent and supplementing the online self-help with peer-facilitated videoconference-based groups to enhance engagement. clinicaltrials.gov , NCT03914781 . Registered 16 April 2019.

Sections du résumé

BACKGROUND BACKGROUND
The Scleroderma Patient-centered Intervention Network (SPIN) developed an online self-management program (SPIN-SELF) designed to improve disease-management self-efficacy in people with systemic sclerosis (SSc, or scleroderma). The aim of this study was to evaluate feasibility aspects for conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF Program.
METHODS METHODS
This feasibility trial was embedded in the SPIN Cohort and utilized the cohort multiple RCT design. In this design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about the trial. Participants in the intervention arm are informed and provide consent, but not the control group. Forty English-speaking SPIN Cohort participants from Canada, the USA, or the UK with low disease-management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale [SEMCD] score ≤ 7) who were interested in using an online self-management program were randomized (3:2 ratio) to be offered the SPIN-SELF Program or usual care for 3 months. Program usage was examined via automated usage logs. User satisfaction was assessed with semi-structured interviews. Trial personnel time requirements and implementation challenges were logged.
RESULTS RESULTS
Of 40 SPIN Cohort participants randomized, 26 were allocated to SPIN-SELF and 14 to usual care. Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly, except that two participants with SEMCD scores > 7 (scores of 7.2 and 7.3, respectively) were included, which was caused by a system programming error that rounded SEMCD scores. Of 26 SPIN Cohort participants offered the SPIN-SELF Program, only 9 (35%) consented to use the program. Usage logs showed that use of the SPIN-SELF Program was low: 2 of 9 users (22%) logged into the program only once (median = 3), and 4 of 9 (44%) accessed none or only 1 of the 9 program's modules (median = 2).
CONCLUSIONS CONCLUSIONS
The results of this study will lead to substantial changes for the planned full-scale RCT of the SPIN-SELF Program that we will incorporate into a planned additional feasibility trial with progression to a full-scale trial. These changes include transitioning to a conventional RCT design with pre-randomization consent and supplementing the online self-help with peer-facilitated videoconference-based groups to enhance engagement.
TRIAL REGISTRATION BACKGROUND
clinicaltrials.gov , NCT03914781 . Registered 16 April 2019.

Identifiants

pubmed: 35219340
doi: 10.1186/s40814-022-00994-5
pii: 10.1186/s40814-022-00994-5
pmc: PMC8881754
doi:

Banques de données

ClinicalTrials.gov
['NCT03914781']

Types de publication

Journal Article

Langues

eng

Pagination

45

Subventions

Organisme : CIHR
ID : TR3-119192
Pays : Canada
Organisme : CIHR
ID : PJT-148504
Pays : Canada

Investigateurs

Laura K Hummers (LK)
Robert Riggs (R)
Shervin Assassi (S)
Ghassan El-Baalbaki (G)
Carolyn Ells (C)
Kim Fligelstone (K)
Amy Gietzen (A)
Geneviève Guillot (G)
Daphna Harel (D)
Monique Hinchcliff (M)
Christelle Nguyen (C)
François Rannou (F)
Karen Nielsen (K)
Michelle Richard (M)
Anne A Schouffoer (AA)
Christian Agard (C)
Nassim Ait Abdallah (NA)
Alexandra Albert (A)
Marc André (M)
Elana J Bernstein (EJ)
Sabine Berthier (S)
Lyne Bissonnette (L)
Alessandra Bruns (A)
Marion Casadevall (M)
Benjamin Chaigne (B)
Chase Correia (C)
Benjamin Crichi (B)
Robyn Domsic (R)
James V Dunne (JV)
Bertrand Dunogue (B)
Regina Fare (R)
Dominique Farge-Bancel (D)
Paul R Fortin (PR)
Brigitte Granel-Rey (B)
Genevieve Gyger (G)
Eric Hachulla (E)
Ariane L Herrick (AL)
Sabrina Hoa (S)
Alena Ikic (A)
Niall Jones (N)
Nader Khalidi (N)
Marc Lambert (M)
David Launay (D)
Hélène Maillard (H)
Nancy Maltez (N)
Joanne Manning (J)
Isabelle Marie (I)
Maria Martin (M)
Thierry Martin (T)
Ariel Masetto (A)
François Maurier (F)
Arsene Mekinian (A)
Sheila Melchor (S)
Mandana Nikpour (M)
Louis Olagne (L)
Vincent Poindron (V)
Susanna Proudman (S)
Alexis Régent (A)
Sébastien Rivière (S)
David Robinson (D)
Esther Rodriguez (E)
Sophie Roux (S)
Perrine Smets (P)
Vincent Sobanski (V)
Robert Spiera (R)
Virginia Steen (V)
Evelyn Sutton (E)
Carter Thorne (C)
Pearce Wilcox (P)
Angelica Bourgeault (A)
Mara Cañedo Ayala (MC)
Andrea Carboni Jiménez (AC)
Marie-Nicole Discepola (MN)
Maria Gagarine (M)
Julia Nordlund (J)

Informations de copyright

© 2022. The Author(s).

Références

Clin Psychol Rev. 2017 Nov;57:129-140
pubmed: 28934623
BMC Psychiatry. 2014 Apr 11;14:109
pubmed: 24725765
Ann Behav Med. 2003 Aug;26(1):1-7
pubmed: 12867348
Nat Rev Dis Primers. 2015 Apr 23;1:15002
pubmed: 27189141
Arch Gen Psychiatry. 2006 May;63(5):484-9
pubmed: 16651505
BMJ. 2021 Apr 29;373:n857
pubmed: 33926904
Arthritis Rheum. 2013 Nov;65(11):2737-47
pubmed: 24122180
Arthritis Care Res (Hoboken). 2010 Aug;62(8):1181-9
pubmed: 20235217
BMJ. 2020 Aug 18;370:m2521
pubmed: 32816816
Eff Clin Pract. 2001 Nov-Dec;4(6):256-62
pubmed: 11769298
Rheumatology (Oxford). 2011 Apr;50(4):762-7
pubmed: 21149249
Rheumatology (Oxford). 2017 Aug 1;56(8):1302-1311
pubmed: 28431140
BMJ. 2008 Nov 11;337:a2390
pubmed: 19001484
JMIR Ment Health. 2017 Jun 30;4(2):e26
pubmed: 28666976
BMC Med Res Methodol. 2016 Aug 26;16(1):109
pubmed: 27566594
Qual Life Res. 2018 Jul;27(7):1885-1891
pubmed: 29569016
Arthritis Care Res (Hoboken). 2011 Nov;63(11):1620-8
pubmed: 22034123
Trials. 2019 Dec 12;20(1):717
pubmed: 31831073
Int J Nurs Stud. 2020 Oct;110:103689
pubmed: 32679402
Disabil Rehabil. 2019 Oct;41(21):2506-2515
pubmed: 29741963
J Clin Epidemiol. 2018 Mar;95:111-119
pubmed: 29277558
BMJ Open. 2013 Aug 07;3(8):
pubmed: 23929922
Prev Chronic Dis. 2013;10:120112
pubmed: 23327828
BMJ. 2016 Oct 24;355:i5239
pubmed: 27777223
Int J Behav Med. 2017 Feb;24(1):42-53
pubmed: 27469998
Health Educ Behav. 2013 Feb;40(1):67-77
pubmed: 22491008
West J Emerg Med. 2017 Oct;18(6):1075-1078
pubmed: 29085540
Lancet Rheumatol. 2021 Jun;3(6):e427-e437
pubmed: 33899008
Syst Rev. 2018 Jun 13;7(1):84
pubmed: 29898785
Health Educ Q. 1993 Spring;20(1):17-28
pubmed: 8444622
BMJ. 2010 Mar 19;340:c1066
pubmed: 20304934
Arthritis Rheum. 1985 Jun;28(6):680-5
pubmed: 4004977
NPJ Prim Care Respir Med. 2020 Apr 1;30(1):11
pubmed: 32238810
Arthritis Care Res (Hoboken). 2016 Aug;68(8):1195-200
pubmed: 26619042
JMIR Res Protoc. 2020 Apr 24;9(4):e16799
pubmed: 32329747
Arthritis Rheum. 1993 Apr;36(4):439-46
pubmed: 8457219
Trials. 2017 Jun 30;18(1):299
pubmed: 28666463
Circulation. 2016 Mar 22;133(12):1189-98
pubmed: 26873943
BMJ Open. 2018 Dec 14;8(12):e024262
pubmed: 30552277
Eur J Hum Genet. 2020 Feb;28(2):165-173
pubmed: 31527858
J Clin Epidemiol. 2012 Mar;65(3):301-8
pubmed: 22169081
Arthritis Care Res (Hoboken). 2019 Mar;71(3):435-447
pubmed: 29741230
Patient Educ Couns. 2014 Sep;96(3):395-403
pubmed: 24973195
J Psychosom Res. 2020 Aug;135:110132
pubmed: 32521358
J Clin Epidemiol. 2014 Nov;67(11):1265-73
pubmed: 25091546

Auteurs

Linda Kwakkenbos (L)

Department of Clinical Psychology, Radboud University, Montessorilaan 3, 6525, HR, Nijmegen, The Netherlands. kwakkenbosl@gmail.com.

Nora Østbø (N)

Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.

Marie-Eve Carrier (ME)

Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.

Warren R Nielson (WR)

St. Joseph's Health Care, London, Ontario, Canada.

Claire Fedoruk (C)

Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.

Brooke Levis (B)

Centre for Prognosis Research, School of Medicine, Keele University, Staffordshire, UK.

Richard S Henry (RS)

Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.
Department of Psychiatry, McGill University, Montreal, Quebec, Canada.

Janet Pope (J)

Department of Medicine, University of Western Ontario, London, Ontario, Canada.

Tracy Frech (T)

Department of Internal Medicine, University of Utah, Salt Lake City, UT, USA.

Shadi Gholizadeh (S)

California School of Professional Psychology/Alliant, Los Angeles, CA, USA.

Sindhu R Johnson (SR)

Toronto Scleroderma Program, Mount Sinai Hospital & Toronto Western Hospital, Toronto, Ontario, Canada.
Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, Ontario, Canada.

Pamela Piotrowski (P)

Private practice - Nutrition, Hamilton, Ontario, Canada.

Lisa R Jewett (LR)

Department of Psychology, Institute of Community and Family Psychiatry, Jewish General Hospital, Montreal, Quebec, Canada.

Jessica Gordon (J)

Department of Medicine, Hospital for Special Surgery, New York City, NY, USA.

Lorinda Chung (L)

Department of Medicine, Stanford University, Palo Alto, CA, USA.
Department of Medicine Palo Alto VA Health Care System, Palo Alto, CA, USA.

Dan Bilsker (D)

Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada.
Department of Psychiatry, University of British Columbia, Vancouver, British Columbia, Canada.

Lydia Tao (L)

Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.

Kimberly A Turner (KA)

Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.

Julie Cumin (J)

Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.

Joep Welling (J)

NVLE Dutch patient organization for Systemic Autoimmune Diseases, Utrecht, The Netherlands.

Catherine Fortuné (C)

Ottawa Scleroderma Support Group, Ottawa, Ontario, Canada.

Catarina Leite (C)

University of Minho, Braga, Portugal.

Karen Gottesman (K)

Scleroderma Foundation, Los Angeles, CA, USA.

Maureen Sauvé (M)

Scleroderma Canada, Hamilton, Ontario, Canada.
Scleroderma Society of Ontario, Hamilton, Ontario, Canada.

Tatiana Sofia Rodriguez Reyna (TSR)

Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico, Mexico.

Marie Hudson (M)

Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.
Department of Medicine, McGill University, Montreal, Quebec, Canada.

Maggie Larche (M)

Department of Medicine, McMaster University and St Joseph's Healthcare, Hamilton, Ontario, Canada.

Ward van Breda (W)

Faculty of Behavioural and Movement Sciences, Vrije University, Amsterdam, The Netherlands.

Maria E Suarez-Almazor (ME)

Department of General Internal Medicine, University of Texas MD Anderson Cancer Center, Houston, TX, USA.

Susan J Bartlett (SJ)

Department of Medicine, McGill University, Montreal, Quebec, Canada.
Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada.

Vanessa L Malcarne (VL)

Department of Psychology, San Diego State University, San Diego, CA, USA.
Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California San Diego, San Diego, CA, USA.

Maureen D Mayes (MD)

Department of Internal Medicine, University of Texas McGovern School of Medicine, Houston, TX, USA.

Isabelle Boutron (I)

Université de Paris, Centre of Research Epidemiology and Statistics (CRESS), Inserm, INRA, Paris, France.
Centre d'Épidémiologie Clinique, Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Hôtel Dieu, Paris, France.

Luc Mouthon (L)

Service de Médecine Interne, Centre de Référence Maladies Autoimmunes Systémiques Rares d'Ile de France, Hôpital Cochin, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France.
APHP-CUP, Hôpital Cochin, Université de Paris, F-75014, Paris, France.

Andrea Benedetti (A)

Department of Medicine, McGill University, Montreal, Quebec, Canada.
Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, Quebec, Canada.
Respiratory Epidemiology and Clinical Research Unit, McGill University Health Centre, Montreal, Quebec, Canada.

Brett D Thombs (BD)

Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.
Department of Psychiatry, McGill University, Montreal, Quebec, Canada.
Department of Medicine, McGill University, Montreal, Quebec, Canada.
Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, Quebec, Canada.
Department of Psychology, McGill University, Montreal, Quebec, Canada.
Department of Educational and Counselling Psychology, McGill University, Montreal, Quebec, Canada.
Biomedical Ethics Unit, McGill University, Montreal, Quebec, Canada.

Classifications MeSH