Benchmarking Residual Limb Pain and Phantom Limb Pain in Amputees through a Patient-reported Outcomes Survey

More than 75% of major limb amputees experience chronic pain; however, data on severity and experience of pain are inconsistent. Without a benchmark using quantitative patient-reported outcomes, it is difficult to critically assess the efficacy of novel treatment strategies. Our primary objective is to report quantitative pain parameters for a large sample of amputees using the validated Patient-reported Outcomes Measurement System (PROMIS). Secondarily, we hypothesize that certain patient factors will be associated with worse pain. METHODS: PROMIS and Numerical Rating Scales for residual limb pain (RLP) and phantom limb pain (PLP) were obtained from a cross-sectional survey of upper and lower extremity amputees recruited throughout North America via amputee clinics and websites. Demographics (gender, age, race, and education) and clinical information (cause, amputation level, and time since amputation) were collected. Regression modeling identified factors associated with worse pain scores (P < 0.05). RESULTS: Seven hundred twenty-seven surveys were analyzed, in which 73.4% reported RLP and 70.4% reported PLP. Median residual PROMIS scores were 46.6 [interquartile range (IQR), 41–52] for RLP Intensity, 56.7 (IQR, 51–61) for RLP Behavior, and 55.9 (IQR, 41–63) for RLP Interference. Similar scores were calculated for PLP parameters: 46.8 (IQR, 41–54) for PLP Intensity, 56.2 (IQR, 50–61) for PLP Behavior, and 54.6 (IQR, 41–62) for PLP Interference. Female sex, lower education, trauma-related amputation, more proximal amputation, and closer to time of amputation increased odds of PLP. Female sex, lower education, and infection/ischemia-related amputation increased odds of RLP. CONCLUSION: This survey-based analysis provides quantitative benchmark data regarding RLP and PLP in amputees with more granularity than has previously been reported.