Development of a tool to map systemic sclerosis pain sources, characteristics, and management experiences: the SPIN pain assessment tool

Objective People with systemic sclerosis (SSc) emphasize the effect pain from multiple sources has on their quality of life. Objectives were to develop a tool to map sources of pain in SSc, determine characteristics of pain from different sources, and understand pain management experiences. Methods We referred to existing research and clinical pain assessment tools and partnered with a 4-member Patient Advisory Team to develop an initial tool version. The tool included questions on SSc pain sources and, for each source, questions on pain source intensity and interference, temporality and predictability, sensory experience, and attempted pain management techniques. To further refine the tool, we conducted nominal group technique (NGT) sessions with people living with SSc and received feedback from healthcare providers who care for people with SSc. Finally, we conducted individual usability testing sessions with people living with SSc. Results We conducted 6 NGT sessions (5 English, 1 French; 22 total participants). We received feedback from 18 healthcare providers, and conducted 5 individual usability testing sessions. The final version of our Scleroderma Patient-centered Intervention Network (SPIN) Pain Assessment Tool included 18 items on pain sources (plus an “other” category), and for each pain source, 12 questions on pain intensity and interference, temporality and predictability, sensory experience, and management. Conclusion The SPIN Pain Assessment Tool includes critical information on pain sources important to people with SSc. It provides a useful tool to study the epidemiology of the complex pain experience in SSc, including pain sources and how pain is experienced.