Perspectives of Patients and Providers on Chronic Pain Assessment in Neurofibromatosis Type 1 (NF1): A Qualitative Study

Background and objective Neurofibromatosis type 1 (NF1) typically presents with physical symptoms, neurocognitive impairments, and chronic pain (CP). Existing pain measures, originally developed for cancer pain or other diseases, do not address the specific healthcare needs of NF1 patients. Hence, this study aimed to examine how individuals with NF1-associated CP and their providers characterize the physical and emotional experiences of pain, as well as their perceived needs in assessing NF1-associated CP. Methods We performed a qualitative study, employing thematic analysis of data collected from six focus groups with 37 patients with NF1 and 16 one-on-one interviews with clinicians involved in NF1 care Results We identified three themes: Describing the Pain Experience, Treating and Dealing With NF1-Associated CP, and Attitudes About Current Pain Measures. Participants perceived certain shortcomings in current pain measures, emphasizing that pain tolerance, adaptation of goals and activities, and the presence of multiple concurrent pain sites are intrinsic to NF1. Patients expressed frustration with the need to quantify a highly subjective and individualized experience using existing measures. Similarly, providers reported frustration that current tools inadequately capture the impact of chronic pain on patients' daily lives, with some preferring more open, conversational approaches to pain assessment. Conclusions The data indicated that pain duration, frequency, regularity, and quality need to be clearly defined and operationalized for patients and providers to similarly understand these domains. Incorporating open-ended items that allow patients to describe their pain in their own words or through images may enhance patients' sense of being understood by their providers. There is a clear need for a standardized pain assessment tool that specifically captures the pain experiences of individuals with NF1.