Patients' Values, Perspectives, and Priorities on Outcome Domains for Persistent Spinal Pain Syndrome Type 2: A Focus Group Study.

Rationale: Monitoring clinical outcomes in persistent spinal pain syndrome type 2 (PSPS-T2) varies widely owing to the refractory nature and diverse treatment strategies. Furthermore, it is unclear which outcome domains are most important from the perspective of the patient with PSPS-T2. In a previous scoping review, we identified patient-relevant outcome domains. The objective of this study was to prioritize patient-relevant outcome domains for PSPS-type 2.

Materials And Methods: Four focus groups with patients with PSPS-T2 were conducted; two groups comprised patients who were treated with spinal cord stimulation (SCS), and two groups comprised patients without SCS. Outcome domains identified through prior research and newly emerged ones were discussed and prioritized using a Nominal Group Technique. Results from the ranking assignments were analyzed, and a qualitative content analysis was performed to value important outcome domains.

Results: Overall, 34 patients with PSPS-T2 participated, 18 of whom were treated with SCS. The five highest ranked outcome domains were "pain," "daily activities," "sleep," "social participation," and "self-reliance." In the qualitative analysis, specific outcome domains emerged as prominent themes: pain, "physical activities," "coping with the illness," "acceptance," and "social participation". In addition, the participants expressed a desire for increased understanding, better acknowledgment of their condition, and gaining perspective during the care process.

Conclusions: The highest valued outcome domains for patients with PSPS-T2 are pain, daily/physical activities, sleep, social participation, self-reliance, coping with the illness, and acceptance. These can be considered for future health care evaluation of patients with PSPS-T2. More research is needed to determine adequate measurement tools for the development of a core outcome set.