Patient Perspectives of Skeletal Muscle Cramping in Dialysis: A Focus Group Study.

Abstract

Skeletal muscle cramping is a common, painful and debilitating symptom experienced by people receiving dialysis. Neither a standardized, patient-endorsed definition of skeletal muscle cramping nor full understanding of patients' perspectives of skeletal muscle cramping exist. We conducted focus groups, within a Kidney Health Initiative (KHI) project, to elicit skeletal muscle cramping experiences of people receiving dialysis as the basis for patient-reported outcome measure (PROM) development. Eligible participants (English-speaking adults aged 18-85 treated by dialysis and a skeletal muscle cramping episode within 30 days) were purposively recruited from a panel (L&E Research) of people receiving dialysis at home or in-center. Standard qualitative methods were used to conduct virtual 90-minute sessions discussing: skeletal muscle cramping clinical characteristics; participants' skeletal muscle cramping experiences; and feedback on a draft skeletal muscle cramping definition and a patient-facing conceptual model developed by the KHI project workgroup. We used qualitative thematic analysis. There were 20 diverse participants in three focus groups. Universally-experienced skeletal muscle cramping attributes differed by dialysis setting in onset, worst pain rating, duration and timing. Variably-experienced attributes (applied to home and in-center dialysis) were: gross and fine motor impact, sleep disruption, mood-related themes of fear and annoyance/frustration/irritability. Avoidance/adaptive behaviors included reluctance or avoiding movement; adjusting what they ate or drink (e.g., yellow mustard, pickles, pickle juice, tonic water); heat application; massage; and cannabidiol use. The skeletal muscle cramping definition was endorsed and insightful suggestions for conceptual model collected. This qualitative study of in-center and home patients' skeletal muscle cramping experiences identified universally- and variably-experienced attributes. The patient-endorsed skeletal muscle cramping definition can serve as a standard for assessment. These results provide the foundation to develop a PROM for regulatory use with people receiving maintenance dialysis who experience skeletal muscle cramping.