A focus group study to inform phantom limb pain assessment strategies after lower limb amputation

Background: Phantom limb pain is challenging for clinicians and researchers to measure accurately. Objective(s): The objective of this study was to use focus groups to inform phantom limb pain assessment through exploring first-hand experiences of individuals with lower limb amputation. Study Design: Focus groups were conducted virtually with individuals with lower limb amputation and phantom limb pain across the United States. Methods: Sessions were recorded and transcribed, and qualitative data were analyzed using thematic analysis. Results: Participants (n=13, 54% women, mean age: 61) were involved in one of four focus groups. Six themes were identified that inform measurement strategies for phantom limb pain: 1) phantom limb pain is a moving target, 2) phantom limb pain disrupts my life, 3) I make choices and trade-offs because of phantom limb pain, 4) phantom limb pain makes me feel isolated and unsure, 5) waiting out the storm, and 6) I cope with phantom limb pain by pushing forward and holding hope. Descriptions of phantom limb pain varied between participants and from episode to episode. Conclusions: The heterogeneity of phantom limb pain presentation, intensity, frequency, duration, and interference in daily life suggests comprehensive assessment with traditional pain measures can be challenging. Clinicians and patients would benefit from measurement strategies developed specifically for people with limb amputation that can accurately describe and differentiate pain experiences. Accurate measurement of pain, specifically phantom limb pain, will facilitate development and testing of patient-specific treatments to reduce the impact of pain on the day-to-day life of people with limb amputation.