An online self-management program for spinal cord injury: a pilot randomised controlled trial of the SCI&U peer health coaching intervention

Background: The spinal cord injury and you (SCI&U) intervention aims to improve self-management skills for persons living with SCI using a web-based, peer health-coaching model. This study assessed the feasibility of conducting a future definitive trial of SCI&U, specifically the feasibility of recruitment and retention, usability and quality of the program, and estimates of effect sizes for a variety of self-management outcomes. Methods: A two-group, randomised, controlled, pilot trial with prospective recruitment, concealed group allocation, blinded outcome evaluation, and waitlist control was conducted in Canada. We aimed to recruit 60 participants who were 18 years and older living in the community at least six months post-injury, were able to speak and read English, and had a primary care physician. The intervention included online client-coach videoconferencing sessions, goal setting, action planning, and a sortable resource library. Data were collected at baseline, 2, 6 and 12 months post-randomisation. SCI&U was offered to the waitlist group at 12 months. Primary short-term self-management outcome was Skill and Technique Acquisition (STA), a subscale of the Health Education Impact Questionnaire. Primary long-term outcome was cumulative days rehospitalised. Results: Of 65 eligible individuals, 34 were randomised to waitlist control and 31 to intervention. Mean time since injury was 25.6 years for intervention and 20.2 years for control. Outcome data were gathered for 86% of participants at 6 months and 89% at 12 months. The usability and quality of the program were highly rated. The difference in STA between intervention and control was 0.56 (95% CI -0.41, 1.52) at 6 months and 0.72 (95% CI -0.28, 1.72) at 12 months. Other subscales also had large effect sizes: Self-monitoring and insight 1.51 (95% CI 0.39, 2.69); and Emotional distress -1.40 (95% CI -3.04, 0.23). In the 12 months following recruitment, 5 intervention and 4 control participants spent median 11 (3-19) and 24 (5-95) nights in hospital, respectively. Conclusions: The trial methodology and procedures were feasible; the SCI&U intervention was acceptable to participants. The program positively impacted an individual’s ability to self-manage. Further research is needed to confirm these findings and evaluate the program on those with recently acquired SCI. Trial registration: ClinicalTrials.gov, NCT04474171, retrospectively registered 07/13/2020; https://clinicaltrials.gov/study/NCT04474171#study-record-dates