Happiness and well‐being: surgical outcomes for families and children with severe cerebral palsy

Abstract

even in basic understanding of how age, sex, and function interact with HRQOL for children with CP. The more we understand about HRQOL, the more we may be able to maximize it for our patients.Of course, there are arguments about how to measure HRQOL accurately -or, indeed, just how to conceptualize HRQOL. Findlay et al. employed the DISABKIDS measure in part because it provides a single overall score for HRQOL and in part because it is worded in such a way that children with significant physical impairment may obtain high scores if they are satisfied with their status. The finding that GMFCS and HRQOL are not related probably reflects the item wording and underlying constructs for functional status/mobility as a component of HRQOL within DISAB-KIDS. Given the weight that physical functioning has within some other HRQOL measures, results from DISABKIDS may be more accurate for populations with CP.3 The presence of a relationship between age and HRQOL is harder to explain, but sparks many questions for future research.While the construct of pain can be as challenging to assess as HRQOL, Findlay et al. used the Health Utilities Index 3 and proxy report with some success and further utilized physician report to postulate on the source of pain. Not surprisingly, physicians did not recognize pain as an issue for over a quarter of the study participants who experienced significant pain. The authors wisely remind us that pain escaping the notice of providers cannot be treated, so careful assessment for pain is very important in clinical settings. Truly, this point cannot be overstated.In a diverse and sizable population of children with CP, Findlay et al. report that half have pain and one in four have pain that limits their activity. The strong correlation between pain and HRQOL is not surprising, but the strength of the relationship along with the frequency of co-occurring pain and reduced HRQOL deserve attention. Providers should consider if better pain control might result in improved HRQOL. Pain is under-recognized and under-treated, but often quite amenable to intervention. 4 If children with CP who have pain can obtain relief, perhaps their HRQOL will also increase. The largest etiological classification for pain was musculoskeletal which is encouraging because a sizable array of medical, therapeutic, and surgical interventions exists to address musculoskeletal concerns in CP. At the same time, even unrecognized or poorly understood pain deserves treatment. Findlay et al.'s findings should lead us to explore the presence and source of pain for all of our patients with CP and to strive to treat that pain. If the CP community can also study the outcomes of these interventions, we may uncover fruitful paths for improving HRQOL. Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study.