Background and aims:  Neuropathic pain (NP) is described as one of the most challenging conditions for individuals with spinal cord injury (SCI) and is primarily managed pharmacologically. However, knowledge is lacking on the patient’s experiences of using these drugs. This study aimed to explore patient’s expectations, experiences and desires with drugs prescribed for SCI NP.

Methods: 18 informants with SCI and NP were interviewed in focus groups consisting of 4-5 participants in four separate sessions. The informants originated from 6 large and small cities in southern Sweden. An emergent design was used using an interview guide containing 6 open questions. The interviews were transcribed verbatim and data was analyzed according to qualitative content analysis.

Results: Initially expectations of drugs giving pain relief were described as rather high but these decreased over time due to negative experiences. Cognitive side-effects and/or insufficient pain-relief decreased further expectations and willingness to try new drugs. Still the informants described a remaining hope for a truly effective drug without side-effects. Since cognitive side-effects were described to impair relations and ability to work/study the informants described having to choose pain for cognitive clarity.
Competence in SCI pain management and a functional dialogue with the treating physician, improved accessibility to health care, and an individually tailored treatment plan and follow–up of prescribed medication were factors desired by the informants. Further, peer support and alternatives to a pharmacological approach were highlighted. 

Conclusions: The need for efficacious drugs, improved inter-personal health care relations and a patient-centred approach emerged.

EXPERIENCES OF PAIN-RELIEVING DRUGS IN INDIVIDUALS WITH SPINAL CORD INJURY AND NEUROPATHIC PAIN - A QUALITATIVE STUDY