Patients First: Toward a Patient-Centered Instrument to Measure Impact of Chronic Pain

BACKGROUND: Numerous instruments are available to measure the impact of chronic pain, yet most have been developed with little or no patient involvement. This study seeks to start bridging that gap by determining which health aspects or attributes (to be included in a future instrument) are considered most important by people with chronic pain. OBJECTIVE: The goal of this study was to reveal which attributes reflecting impact of chronic pain are considered most important by people with chronic pain and to analyze differences in importance according to gender, age categories, diagnostic subgroups, and pain intensity categories. DESIGN: This study used a sequential explanatory mixed-methods design: literature search, focus group meetings, and online survey. METHODS: First, a literature search was performed to identify the attributes in existing instruments. In 68 instruments meeting inclusion criteria, 155 unique attributes were identified, 85 of which remained after applying the exclusion criteria. Second, 2 focus group meetings, with 6 and 4 patients, respectively, were held to verify that no attributes had been missed. Three attributes were subsequently added. Third, individuals with chronic pain were then sent an online survey through several patient organizations. RESULTS: A total of 939 patients were asked to select the 8 attributes they deemed most important, which resulted in the following list: fatigue, social life, cramped muscles, sleeping, housekeeping, concentration, not being understood, and control over pain. The importance assigned to these 8 attributes varied slightly according to age, gender, and diagnostic subgroup. LIMITATIONS: Participation rate could not be established because of the online survey. CONCLUSIONS: Attributes reflecting impact of chronic pain deemed most important by patients are revealed. Importance of impact differs according to subgroups. The “patients-first” methodology used here revealed attributes that were not comprehensively covered in currently available instruments for measuring the impact of chronic pain.