Perspectives on quality-of-life priorities for caregivers and children with neuromuscular, syndromic, and skeletal dysplasia scoliosis: a CPCHILD questionnaire analysis.

BACKGROUND

Literature is scarce regarding health-related quality of life priorities between caregivers and children with scoliosis with an underlying neuromuscular, syndromic, or skeletal dysplasia diagnosis (NSSD). Section 7 of the CPCHILD offers a tool for assessing unique QoL concerns in this population with a 36-item assessment. Our objective was to identify areas of agreement/disagreement between caregivers and children regarding QoL priorities.

METHODS

A retrospective review of prospectively, consecutively enrolled NSSD patients who underwent scoliosis surgery from 2016 to 2022. Descriptive statistics were performed to rank the responses in order of priority. Based on rankings, the 36 QoL items were grouped into concordant agreement (high/low priority) and discordant agreement (high priority to caregiver or children). The cohort was further analyzed by diagnosis and ambulatory status.

RESULTS

195 CPCHILD questionnaires were analyzed. "Overall health", "Happiness", and "Comfort while sitting" were items both caregivers and children agreed were high priorities. Conversely, items such as "Putting on/taking off upper clothes", "Putting on/wearing footwear", "Hair care/grooming", "Transferring into/out of a wheelchair/chair", "Standing for exercise/transfers", and "Able to play alone" were low priorities.

CONCLUSION

NSSD families share global QoL priorities, however, distinct priorities can be identified between diagnostic and functional groups. Understanding these areas of concordance and discordance may help providers address and assess the outcomes of scoliosis surgery. Our findings recognize that the impact of scoliosis surgery extends beyond improving spinal alignment and function. Factors such as emotional well-being, social engagement, and functional independence clearly influence perceptions of QoL in anticipation of scoliosis surgery.