Complex regional pain syndrome: A comprehensive qualitative research study on unmet needs in the “patient journey”

Abstract

Purpose: This qualitative research study aimed to characterize the “patient journey” for patients with complex regional pain syndrome (CRPS) and identify the unmet needs related to the management and treatment of the condition for healthcare providers (HCPs), patients, and their caregivers. Materials and Methods: Multifaceted, dynamic methodology, iteratively gathering cognitive, emotional and social insights, was used to support and conduct in-depth, immersion interviews across the USA with 59 HCPs in-office and in roundtable discussions, and 20 patient-support partner dyads in-home. Results: Patients were aged >18 years, primarily female, and all were diagnosed with CRPS (limited to type 1 in this patient cohort). Results show that the current state of CRPS treatment may fall short in multiple key areas. In some cases, poor awareness of CRPS causes delayed diagnoses impacting the opportunity for early treatment, resulting in long-term poor health outcomes. Consequently, the CRPS “patient journey” may be characterized by clinical frustration of physicians and disappointment for some patients. The poor treatment experiences and outcomes for some patients and HCPs may build the perception of a non-collaborative relationship. HCPs and patients agree that an effective treatment would be one that addresses CRPS rather than its symptoms, and the availability of such an option would transform the treatment experience. Conclusion: CRPS leads to cognitive, social and emotional burdens for patients and their caregivers. There is an unmet need for improved CRPS disease awareness and successful therapeutic options to aid in earlier diagnoses, effective treatment and better outcomes for HCPs, patients, and their caregivers.