The following is a summary of “Protocol for the Development of a Tool to Map Systemic Sclerosis Pain Sources, patterns, and Management Experiences: A Scleroderma Patient-centered Intervention Network patient-researcher Partnership,” published in the June 2024 issue of Rheumatology by Santo et al.

Systemic sclerosis (SSc) is a rare, multifaceted autoimmune rheumatic disease known for its significant impact on patient quality of life, primarily due to pain. Despite its prevalence, the frequency and relative importance of various pain sources in SSc, as well as patterns and management experiences, have not been systematically studied. This project aims to (1) develop a comprehensive tool in collaboration with researchers, healthcare providers, and patients to map pain sources in SSc, identify pain patterns, and understand pain management experiences, and (2) administer the final tool to participants in the large, multinational Scleroderma Patient-Centered Intervention Network (SPIN) Cohort.

The development of the pain assessment tool will begin by adapting validated pain assessment templates with input from patient advisors to suit the unique context of SSc. The tool will encompass questions addressing pain sources, patterns, intensity, management techniques, and barriers to effective pain management. The researchers will then conduct nominal group technique sessions with patients with SSc and their healthcare providers to further refine the tool. Following this, individual usability testing sessions will be held with participants from the SPIN Cohort. Once finalized, the tool will be administered to over 1,300 active SPIN Cohort participants across 54 sites in seven countries. Unsupervised clustering using the KAy-Means for MIxed LArge data (KAMILA) method will identify participant subgroups based on pain sources, and latent profile analysis will be employed to categorize participants by pain intensity profiles and predict subgroup membership.

The completion of this tool will enable systematic mapping of pain sources and management experiences in individuals with SSc. This understanding will provide a foundation for future research into the pathophysiology of pain in SSc and the development of targeted interventions to enhance pain management strategies. This collaborative effort underscores the importance of patient-centered approaches in addressing the complexities of pain in systemic sclerosis.

Source: bmcrheumatol.biomedcentral.com/articles/10.1186/s41927-024-00398-3