Differences in health‐related quality of life and caregiver burden after hip and spine surgery in non‐ambulatory children with severe cerebral palsy

DiFazio, Rachel; Vessey, Judith A.; Zurakowski, David; Snyder, Brian D.

doi:10.1111/dmcn.12872

Cited by 29 publications

(22 citation statements)

References 26 publications

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“…An important commonality in children with CCC are functional limitations and pain due to serious musculoskeletal problems, including hip disease 3–5 . Hip reconstruction surgeries (soft tissue release with varus derotation osteotomy and/or pelvic osteotomy) optimize hip alignment, stability, and function, and improve pain and health‐related quality of life 6,7 . Postoperative hospitalization after hip reconstruction is required for pain control and recovery because of the physiological stress of the surgery, lengthy anesthesia exposure, and the underlying health fragility that many children with neurological CCCs experience 8 …”

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confidence: 99%

“…[3][4][5] Hip reconstruction surgeries (soft tissue release with varus derotation osteotomy and/or pelvic osteotomy) optimize hip alignment, stability, and function, and improve pain and health-related quality of life. 6,7 Postoperative hospitalization after hip reconstruction is required for pain control and recovery because of the physiological stress of the surgery, lengthy anesthesia exposure, and the underlying health fragility that many children with neurological CCCs experience. 8 Children with neurological CCCs are also at risk of developing multiple, co-existing, chronic conditions that cause impairments in the digestive, respiratory, cardiac, and other body systems.…”

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Hospital resource use after hip reconstruction surgery in children with neurological complex chronic conditions

Berry

DiFazio

Melvin

et al. 2020

Develop Med Child Neuro

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To assess how co-occurring conditions influence recovery after hip reconstruction surgery in children with neurological complex chronic conditions (CCCs). METHOD This was a retrospective analysis of 4058 children age 4 years or older with neurological CCCs who underwent hip reconstructive surgery between 1st January 2015 and 31st December 2018 in 49 children's hospitals. The presence of co-occurring chronic conditions was assessed using the Agency for Healthcare Research Chronic Condition Indicator system. Multivariable, hierarchical regression was used to assess the relationship between co-existing conditions and postoperative hospital length of stay (LOS), cost, and 30day readmission rate. RESULTS The most common co-occurring conditions were digestive (60.1%) and respiratory (37.9%). As the number of co-existing conditions increased from one to four or more, median LOS increased 67% (3d [interquartile range {IQR} 2-4d] to 5d [IQR 3-8d]); median hospital cost increased 41%

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Hospital resource use after hip reconstruction surgery in children with neurological complex chronic conditions

Berry

DiFazio

Melvin

et al. 2020

Develop Med Child Neuro

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“…The Dutch, German, Scandinavian, and Korean versions of the CPCHILD have shown relevant validity in terms of known-group validity, convergent validity, internal consistency, and test-retest reliability [6][7][8][9]. Recently, the CPCHILD questionnaire was used to evaluate QOLrelated outcomes after hip reconstructive surgery among children with CP, and previous studies have used the CPCHILD questionnaire to report improved HRQOL after surgery [10,11].…”

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confidence: 99%

Differences in responses to English and Korean versions of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD)

Sung

Kwon

Cho

et al. 2020

Health Qual Life Outcomes

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Background: The purpose of this study was to identify differences in caregiver responses to Korean-language and English-language versions of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) questionnaire. Methods: Patient data were acquired from the Cerebral Palsy Hip Outcomes Project database, which was established to run a large international multicenter prospective cohort study of the outcomes of hip interventions in cerebral palsy. Thirty-three children whose caregivers had completed the Korean version of CPCHILD were matched by propensity scoring with 33 children whose parents completed the English version. Matching was performed on the basis of 12 covariates: age, gender, gross motor function classification system level, migration percentage of right and hip, seizure status, feeding method, tracheostomy status, pelvic obliquity, spinal deformity, parental report of hip pain and contracture interfering with care. Results: There were no significant differences in CPCHILD scores for section 4 (Communication and Social Interaction), and section 5 (Health) between two groups. Korean-language CPCHILD scores were significantly lower than English-language CPCHILD scores for section 1 (Personal Care/Activities of Daily Living), section 2 (Positioning, Transferring and Mobility), section 3 (Comfort and Emotions) and section 6 (Overall Quality of Life) as well as in terms of total score. Conclusions: Cultural influences, and the community or social environment may impact the caregivers' perception of the health-related quality of life of their children. Therefore, physicians should consider these differences when interpreting the study outcomes across different countries.

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“…The study by DiFazio et al . is an important first step towards increasing our understanding about the treatment response of families and children with severe physical impairments who undergo corrective hip and spine surgery.…”

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“…The study by DiFazio et al 6 is an important first step towards increasing our understanding about the treatment response of families and children with severe physical impairments who undergo corrective hip and spine surgery. The authors assess the HRQOL of 44 children with severe CP before and at four time points after corrective spine (n=14) or hip surgery (n=30).…”

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

Gannotti

2015

Develop Med Child Neuro

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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.

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Differences in health‐related quality of life and caregiver burden after hip and spine surgery in non‐ambulatory children with severe cerebral palsy

Cited by 29 publications

References 26 publications

Hospital resource use after hip reconstruction surgery in children with neurological complex chronic conditions

Hospital resource use after hip reconstruction surgery in children with neurological complex chronic conditions

Differences in responses to English and Korean versions of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD)

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

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