Developing Rehabilitation Treatment Decision Aid for People Living with Complex Regional Pain Syndrome (CRPS)
Abstract
This Ph.D. dissertation aimed to develop a treatment decision aid for people with Complex Regional Pain Syndrome (CRPS) using the Ottawa Decision Support Framework (ODSF). The decision aid was developed throughout a two-phase process.
The first phase involved understanding the existing evidence and the factors influencing decision-making in CRPS rehabilitation: priorities and preferences of patients and therapists were considered. This phase encompassed the integration of diverse sources of evidence, including systematic reviews, overview of systematic reviews, critical appraisal of guidelines, and a survey exploring patients' and therapists' priorities and preferences for CRPS rehabilitation interventions. All forms of evidence were used to inform a draft decision aid. The second phase involved evaluating the content validity of the developed decision aid through cognitive interviews conducted with patients and therapists. These findings were presented in separate chapters.
The evidence suggested that specific interventions, including mirror therapy and the graded motor imagery program can significantly improve pain and disability for patients with CRPS. However, the most evidence is available in the post-stroke CRPS population, and these interventions showed promising outcomes when used as additions to conventional stroke rehabilitation interventions compared to common rehabilitation approaches. The effectiveness of other targeted interventions compared to conventional physical therapy or sham treatments remains to be determined due to limited evidence. Furthermore, the appraisal of guidelines highlighted that clinical practice guidelines for CRPS management rely mostly on expert opinion and clinical experience rather than robust empirical evidence. Based on the findings of evidence, clinical guidelines, and the patients’ and therapists’ opinion, recommendations for conservative management primarily focus on pain management, functional restoration, and inter/multidisciplinary care. Both patients and therapists emphasized the importance of reducing pain and improving overall function as critical outcomes. Shared decision-making emerged as the preferred approach for selecting a rehabilitation intervention among most patients and therapists.
The developed decision aid consists of two sections: an educational section and a decision aid section. The educational section provides patients with the concept of decision aid, the definition and diagnosis of CRPS, and a simple explanation of the available rehabilitation interventions. The decision aid section addresses key topics across seven subsections: 1. identifying important outcomes, 2. evaluating the effectiveness of interventions on specific outcomes, 3. weighing the pros and cons of each rehabilitation intervention, 4. highlighting key points to remember, 5. reflecting on priorities and preferences, 6. fact-checking information about CRPS, and 7. determining the patients' leaning towards making a final decision.
The development of this treatment decision aid represents a significant step forward in addressing the complexities of decision-making in CRPS rehabilitation. By incorporating evidence-based recommendations and the perspectives of patients and therapists, the decision aid aims to improve patient outcomes and facilitate collaborative decision-making processes. Implementing this decision aid in clinical settings is expected to empower patients, enhance their engagement in their care, and ultimately lead to more personalized and effective treatment approaches for individuals with CRPS.