Patient-centered spinal cord injury (SCI) care focuses on outcomes that are meaningful to people living with SCI and their families. Use of patient-reported outcome measures (PROMs) is a key element of patient-centered care that captures symptoms, experiences, and function in day-to-day life from the perspectives of patients to assess health and monitor treatment progress. PROMs also facilitate the discussion of patient needs, preferences, and values to guide shared decision-making.
While PROMs are increasingly used for monitoring patient outcomes and to guide and evaluate care across many chronic health conditions, uptake has been slow in SCI care. Part of the challenge is in identifying what to measure, and how to measure outcomes in ways that account for language and cultural differences and are minimally burdensome to patients and providers. PROMs used in diverse patients (e.g., languages, cultures) and settings also must have evidence of the relevance and validity of PROMs (i.e., “fit for purpose”). Over the last 17 years, a state-of-the-science measurement system has been developed for SCI research known as SCI-QOL. SCI-QOL measures 22 aspects of physical, emotional, and social health. There is growing interest in using SCI-QOL in ongoing SCI care. Recently, this team of presenters has received 5 different grants from foundations in the US and Canada to prepare these measures for full integration into SCI clinical practice.
This instructional course will describe research from four grants funded by the Craig H. Neilsen Foundation work examining the feasibility, effectiveness, and sustainability of implementing SCI-QOL PROMs as part of ongoing care in diverse clinical settings. Our diverse, international group of presenters will highlight our work to identify barriers and facilitate implementation of SCI-QOL across different health care systems and settings. Dr. David Tulsky will be presenting the US collaborators' work, including how actionable cut points have been identified for SCI-QOL scales assessing Mobility, Self-Care, Bladder and Bowel Management, Depression, Anxiety, Resilience, and Participation in Social Roles and Activities, attempts to integrate into a clinical rehabilitation setting, and use in self-monitoring/self-management applications [35 minutes]. Drs. Sara Ahmed and Susan Bartlett will discuss efforts to integrate SCI-QOL in SCI clinical care in three Canadian provinces, including efforts to translate SCI-QOL measures into French and compare their performance with English versions [35 minutes]. Throughout these four studies, integrated participatory action approaches have been used to engage patients, families, clinicians, patient advocacy groups, and decision makers at every step of the research process. The course will conclude with a discussion of the benefits of using PROMs in real world settings to improve patient self-management, outcomes, and satisfaction; patient-clinician communication, and shared decision making; and clinical team satisfaction, function, workflow [Discussant: Dr. Denise Tate, 20 minutes].

DISCLOSURES: This work is funded by the Rick Hansen Institute and the Craig H. Neilsen Foundation. Dr. Tulsky holds copyright of the SCI-QOL but the measures are free and Dr. Tulsky does not receive any financial remuneration for this copyright. Drs. Tulsky and Ahmed are on the board of the PROMIS Health Organization but do not receive compensation.