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

## TL;DR

This study explores how patients with NF1 and their providers describe and assess chronic pain, highlighting the need for better tools tailored to NF1.

## Contribution

The study identifies specific limitations of current pain measures for NF1 and proposes the need for a new, standardized assessment tool.

## Key findings

- Current pain measures fail to capture the unique aspects of NF1-associated chronic pain.
- Patients and providers both express frustration with existing tools that do not reflect the subjective and multifaceted nature of NF1 pain.
- Open-ended or image-based methods may improve communication and understanding of pain in NF1 patients.

## Abstract

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.