The burden of back pain varies in family members – an exploratory study

Objective
Diagnosing and treating patients with back pain is a complex challenge. One aspect which is often overlooked is the importance of social support and assistance from family members. While the burden on family members of other diseases, such as mental health and cancer, has been studied before, no research has explored how back pain burdens family members. The “Family Reported Outcome Measurement-16” (FROM-16) tool is a generic instrument that can measure the impact on family members regardless of the disease. The purpose of this study was (a) to investigate the applicability of FROM-16 to family members of patients with back pain and (b) to provide a preliminary description of how back pain influences the burden on family members.

Methods
To assess the applicability of using FROM-16, we recruited adult family members who accompanied patients visiting the Spine Centre of Southern Denmark. This outpatient specialized department receives approximately 12,000 patients in the medical department and 3,000 patients in the surgical department annually. Flyers and secretaries invited participants from the shared waiting room. Family members who agreed to participate completed FROM-16 and participated in semi-structured interviews.

A cross -sectional convenience cohort was used to explore the burden of low back pain experienced by family members. Specifically, we recruited family members accompanying back pain patients to complete FROM-16 and provide their demographic information. Demographic and clinical data from back pain patients were acquired through our clinical registry. We assessed associations between burden and a-priori selected variables through univariable and multivariable linear regression. The analysis plan used in this study was uploaded a priori to OSF (https://osf.io/rqnvz/).

Results
The applicability of FROM-16 was assessed on 12 family members. All participants comprehended the FROM-16 items, while some deemed certain items as irrelevant (e.g., sex life for non-partners).

Data on 237 family members was collected. While some participants experienced much burden, others experienced little. The most prevalent high-burden items were worry, family activities, and frustration, while the least burdensome items were expenses, work/study, eating habits, and anger.

We detected an association between the burden of back pain and family members for the following: age (lower burden with higher age) and relation (partners had the most burden). Minor but statistically significant associations were found for patient factors related to pain intensity and distress. Family burden was mainly associated with patients' disability, with a 3.1% increase in burden for every 10% increase in the Oswestry Disability Index.

Conclusion
To the best of our knowledge, this study is the first to assess the burden of family members to patients with back pain. Back pain negatively impacts family members but to varying degrees. Age, partnership, and disability appear to drive the burden. While FROM-16 captures the domain of ‘burden’ to some extent, a questionnaire specifically targeted family members to back pain patients is needed.