Perceptions of phantom limb pain in lower limb amputees and its effect on quality of life: a qualitative study

Background: Phantom limb pain (PLP) is a prevalent complication post-amputation. Currently, qualitative literature exploring the experience of PLP in amputees is sparse, and little is known about whether the educational needs of amputees are being met. Objectives: To explore lower limb amputees' descriptive lived experiences of PLP, to understand how PLP affects quality of life and to determine whether amputees feel they are provided with adequate information about PLP. Methods: A qualitative descriptive approach, situated under the constructivist paradigm was taken, consisting of cross-sectional semi-structured interviews. A purposive sample of 15 lower limb amputees, 1-3 months post-surgery with past or current experience of PLP were interviewed once about their experience of PLP. Interviews were audio-recorded, transcribed verbatim and analysed using Framework Analysis. Interviews were conducted while participants were inpatients at an amputee rehabilitation unit in London. Results: Six key themes were identified during analysis, of which three were related to PLP and are reported on in this article (real and physical phantoms, living with a phantom and being informed). PLP had numerous painful qualities. The phantom felt real, with kinetic and kinaesthetic properties. PLP had multiple meanings to amputees, was considered a reminder of circumstances and could affect quality of life. Information provided about PLP was inadequate. Conclusion: PLP can be a severe and annoying experience acting as a reminder of amputees' circumstances. Information provided about PLP is inadequate, with some amputees stilt perceiving PLP as mental and imaginary. Education about PLP and awareness and accessibility to non-pharmacological interventions needs to be improved.