INTERnational Project for the Evaluation of “activE Rehabilitation” (inter-PEER) – a protocol for a prospective cohort study of community peer-based training programmes for people with spinal cord injury

Abstract

Background: Active Rehabilitation (AR) is a community peer-based concept for people with spinal cord injury (SCI) that is primarily delivered through brief residential training programmes. Despite a plethora of positive anecdotal evidence of AR programmes as life-changing experiences, the effects of AR-programmes have not been evaluated scientifically. Here, we present the protocol of the INTERnational Project for the Evaluation of "activE Rehabilitation" (inter-PEER) aiming to evaluate the effects of AR training programmes on community-dwelling individuals with SCI. Methods: International prospective cohort study that recruits consecutive participants in AR training programmes. Evaluation is conducted through a web-based survey at 3 time-points: at the commencement and completion of the training programme, and 3 months after the end of the training programme. Evaluation also includes a practical wheelchair skills test at the first two time-points. The primary outcome measures are the Spinal Cord Independence Measure Self-report (SCIM-SR), the Queensland Evaluation of Wheelchair Skills test (QEWS), the Wheelchair Skills Test Questionnaire (WST-Q) and the Moorong Self-Efficacy Scale (MSES). The secondary outcome measures are the 11-item Life Satisfaction Questionnaire (LiSat-11), the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation), the Leisure Time Physical Activity Questionnaire for people with SCI (LTPAQ-SCI) and the 10-item Connor-Davidson Resilience Scale (CD-RISC-10). We piloted the implementation of the protocol in Sweden in 7 participants with diverse SCI and sociodemographic characteristics and collected feedback from participants and peer-mentors about study procedures through interviews, a workshop and field observations.

Sound psychometric properties of the Swedish version of the Spinal Cord Independence Measure Self-Report

“…The Inter-PEER commenced in Sweden in 2018 and includes participants in AR training programmes that last for a minimum of 7 days. The research project is designed to be fully integrated into the AR programmes (for details, see Divanoglou et al ( 14 )). All participants in the Swedish AR training programmes are invited to participate in the Inter-PEER, providing they meet the following inclusion criteria: ( i ) having a SCI (traumatic, non-traumatic, or congenital, e.g.…”

“…All participants in the Swedish AR training programmes are invited to participate in the Inter-PEER, providing they meet the following inclusion criteria: ( i ) having a SCI (traumatic, non-traumatic, or congenital, e.g. spina bifida); ( ii ) being 16 years or older; ( iii ) being able to comprehend and answer written questions in Swedish and ( iv ) being able to independently push a manual wheelchair for at least 25 m on an even surface (applicable for wheelchair users) ( 14 ).…”

“…At the first and second evaluation points, a research assistant was available to clarify any issues when completing the online survey. Based on feedback during the pilot implementation of the Inter-PEER survey, and with the aim of reducing the complexity and time for survey completion, we chose to keep the format of the online questionnaire as simple as possible ( 14 ). Therefore, we removed any logic rules, such as making it mandatory to answer specific questions, and applying jump-rules for items in bladder, bowel and mobility.…”

“…We recently initiated the INTERnational Project for the Evaluation of “activE Rehabilitation” (Inter-PEER) ( 14 ), a collaboration between an international team of researchers and the non-profit organizations using the Active Rehabilitation (AR) concept. AR is a community rehabilitation concept, based on the use of peer mentors as trainers and educators.…”

“…AR is a community rehabilitation concept, based on the use of peer mentors as trainers and educators. Inter-PEER is a prospective cohort study with the primary aim to assess the effects of AR training programmes on community-dwelling individuals with SCI with regard to physical independence, wheelchair skills, participation, life satisfaction, level of physical activity, resilience, and self-efficacy ( 14 ). As part of Inter-PEER, we translated and culturally adapted the SCIM-SR into Swedish (s-SCIM-SR).…”