The impact of spinal pain on family members' burden: a cross-sectional study

Spinal pain is highly prevalent and associated with substantial individual burden. Qualitative studies suggest that family members of individuals with spinal pain may also experience burden; however, quantitative data on family-member burden remain limited. This study had two linked objectives. First, we conducted a pragmatic cognitive debriefing study to evaluate the content validity of the Family-Reported Outcome Measure-16 (FROM-16) in a spinal pain context. Second, we conducted an exploratory cross-sectional survey using FROM-16 to estimate family-member burden in a Danish secondary-care hospital department and explore associations with family-member and patient characteristics.

Content validity of FROM-16 was assessed by semi-structured interviews of family members to patients with spinal pain at The Spine Center of Southern Denmark. The burden of spinal pain was assessed in a cohort of family members to spinal pain patients using FROM-16. Family members were asked about descriptive characteristics, and patient characteristics were extracted from a clinical registry. Summary statistics were reported, and regression modeling was used to explore associations.

12 family members were interviewed and raised concerns about some item relevance (e.g., spare time, work and study, sex life). The cohort study included 291 family members, revealing varying burdens, with the highest burden in the emotional domain. However, some items had low response rates. The multivariable model indicated that the burden was highest among younger partners with poor self-rated health and was associated with clinical characteristics, notably disability and pain duration.

The burden of spinal pain on family members varied greatly and was predominantly related to the emotional domain of younger partners with poor self-rated health. However, FROM-16's generic nature may underestimate this burden. Developing a more tailored questionnaire could better capture the impact of spinal pain on family members and inform improved care and support interventions for informal caregivers.