Factors associated with patient-reported likelihood of using online self-care interventions: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study

Kwakkenbos, Linda; Cumin, Julie; Carrier, Marie‐Eve; Bartlett, Susan J.; Malcarne, Vanessa L.; Mouthon, Luc; Nielson, Warren R.; Rannou, François; Welling, Joep; Thombs, Brett D.

doi:10.1136/bmjopen-2019-029542

Cited by 6 publications

(6 citation statements)

References 40 publications

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“…First, the SPIN Cohort constitutes a convenience sample of SSc patients receiving treatment at a SPIN recruiting centre, and patients at these centres may differ from those in other settings. Additionally, SSc patients in the SPIN Cohort complete questionnaires online, which may further limit the generalizability of findings, as all participants already have Internet access and are comfortable using it in a research setting ( Kwakkenbos et al, 2019 ). Third, we were only able to include English-speaking SPIN Cohort participants in this study.…”

Section: Discussionmentioning

confidence: 99%

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND)

Kwakkenbos

Carrier

Welling³

et al. 2022

PeerJ

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Purpose The Scleroderma Patient-centered Intervention Network (SPIN) online hand exercise program (SPIN-HAND), is an online self-help program of hand exercises designed to improve hand function for people with scleroderma. The objective of this feasibility trial was to evaluate aspects of feasibility for conducting a full-scale randomized controlled trial of the SPIN-HAND program. Materials and Methods The feasibility trial was embedded in the SPIN cohort and utilized the cohort multiple randomized controlled trial (cmRCT) design. In the cmRCT design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about trials conducted using the cohort. When trials were conducted in the cohort, participants randomized to the intervention were informed and consented to access the intervention. Participants randomized to control were not informed that they have not received an intervention. All participants eligible and randomized to participate in the trial were included in analyses on an intent-to-treat basis. Cohort participants with a Cochin Hand Function Scale score ≥ 3/90 and an interest in using an online hand-exercise intervention were randomized (1:1 ratio) to be offered as usual care plus the SPIN-HAND Program or usual care for 3 months. User satisfaction was assessed with semi-structured interviews. Results Of the 40 randomized participants, 24 were allocated to SPIN-HAND and 16 to usual care. Of 24 participants randomized to be offered SPIN-HAND, 15 (63%) consented to use the program. Usage of SPIN-HAND content among the 15 participants who consented to use the program was low; only five (33%) logged in more than twice. Participants found the content relevant and easy to understand (satisfaction rating 8.5/10, N = 6). Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly. The required technical support was minimal. Conclusions Trial methodology functioned as designed, and the SPIN-HAND Program was feasibly delivered; however, the acceptance of the offer and use of program content among accepters were low. Adjustments to information provided to potential participants will be implemented in the full-scale SPIN-HAND trial to attempt to increase offer acceptance.

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Section: Discussionmentioning

confidence: 99%

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND)

Kwakkenbos

Carrier

Welling³

et al. 2022

PeerJ

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“…We collected information on the out-of-pocket costs incurred by people with scleroderma as part of an international online survey (primarily Canada, the United States, France and the United Kingdom), which aimed to understand the preferences of people with scleroderma for autologous stem-cell transplant treatment (results reported elsewhere). 16 Participants were recruited to an open survey sent to the mailing list of the Scleroderma Patient-centered Intervention Network (SPIN) cohort (a group of people with scleroderma from around the world who participate in SPIN’s online studies) 17 and 2 patient organizations, the Scleroderma Association of British Columbia and the Sclérodermie Québec. Participants were eligible if they reported having a diagnosis of scleroderma.…”

Section: Methodsmentioning

confidence: 99%

The financial burden of accessing care for people with scleroderma in Canada: a patient-oriented, cross-sectional survey

Trenaman

Kaal

Laba

et al. 2023

cmajo

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Background: Patients with scleroderma require a lifetime of treatment and frequent contacts with rheumatologists and other health care professionals. Although publicly funded health care systems in Canada cover many costs, patients may still face a substantial financial burden in accessing care. The purpose of this study was to quantify out-of-pocket costs borne by people with scleroderma in Canada and compare this burden for those living in large communities and smaller communities. Methods: We analyzed responses to a Web-based survey of people living in Canada with scleroderma. Respondents reported annual out-of-pocket medical, travel and accommodation and other nonmedical costs (2019 Canadian dollars). We used descriptive statistics to describe travel distance and out-of-pocket costs. We used a 2-part model to estimate the impact on out-of-pocket costs of living in a large urban centre (≥ 100 000 population), compared with smaller urban centres or rural areas (< 100 000 population). We generated combined mean estimates from the 2-part models using predictive margins. Results: The survey included 120 people in Canada with scleroderma. The mean, annual, total out-of-pocket costs were $3357 (standard deviation $5580). Respondents living in smaller urban centres and rural areas reported higher mean total costs ($4148, 95% confidence interval [CI] $3618–$4680) and travel or accommodation costs ($1084, 95% CI $804–$1364) than those in larger urban centres (total costs $2678, 95% CI $2252–$3104; travel or accommodation costs $332, 95% CI $207–$458). Interpretation: Many patients with scleroderma incur considerable out-of-pocket costs, and this burden is exacerbated for those living in smaller urban centres and rural areas. Health care systems and providers should consider ways to alleviate this burden and support equitable access to care.

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“…The SPIN Cohort was established in 2013 to collect patient-reported data to better understand the problems faced by patients with SSc and to develop and test interventions to improve quality of life for patients with SSc (Kwakkenbos et al, 2019). The SPIN Cohort includes adult patients with SSc from 45 SPIN Centers in the United States, Canada, the United Kingdom, France, Spain, Mexico, and Australia.…”

Section: Methodsmentioning

confidence: 99%

“…The SPIN Cohort was established in 2013 to collect patient-reported data to better understand the problems faced by patients with SSc, and to develop and test interventions to improve quality of life for patients with SSc (Kwakkenbos et al, 2019) (2) 18 years of age or older, (3) ability to give informed consent, and (4) fluent in English, French, or Spanish. Exclusion criteria included not having access to the internet or otherwise not being able to respond to the patient-reported measures via the internet.…”

Section: Pain In Systemic Sclerosismentioning

confidence: 99%

Pain and Self-Efficacy Among Patients With Systemic Sclerosis

et al. 2021

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Background: Pain is one of the most common symptoms affecting patients with systemic sclerosis, however, little is known about the relationship between self-efficacy and pain and changes in pain over time. Objectives:The purpose of this study was to describe the relationships between self-efficacy and pain in patients with systemic sclerosis, as well as determine whether changes in self-efficacy mediate changes in pain.Methods: A prospective longitudinal study was conducted using data from the Scleroderma Patient-centered Intervention Network Cohort. The baseline sample included 1903 adults, with a trajectory subsample of 427 who completed three-month assessments across three-years. Hierarchical (sequential) forward multivariable regression, covarying for participant characteristics, was conducted to determine the association between self-efficacy and patient characteristics on pain outcomes. Trajectory models, covarying for participant characteristics, were used to examine changes in self-efficacy and pain outcomes across time, and whether selfefficacy mediated the pain trajectories.Results: Mean time since diagnosis was 9.5 years with 39.2% diagnosed with diffuse cutaneous systemic sclerosis. Greater self-efficacy was associated with less pain interference and intensity.Increasing age, female gender, finger ulcers, and small joint contractures were related to greater pain interference and intensity. Esophageal gastrointestinal symptoms were associated with more pain interference. Self-efficacy and pain trajectories remained stable across time, and selfefficacy did not mediate the pain trajectories.Discussion: This study identified self-efficacy, age, gender, finger ulcers, small joint contractures, and esophageal gastrointestinal symptoms as important correlates associated with pain in patients PAIN IN SYSTEMIC SCLEROSIS with systemic sclerosis. Additionally, this study found that self-efficacy and pain outcomes remained stable over time, providing important insights into the longitudinal pain experiences of patients with systemic sclerosis.

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Factors associated with patient-reported likelihood of using online self-care interventions: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study

Cited by 6 publications

References 40 publications

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND)

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND)

The financial burden of accessing care for people with scleroderma in Canada: a patient-oriented, cross-sectional survey

Pain and Self-Efficacy Among Patients With Systemic Sclerosis

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