Quality of Life in Children and Adolescents With Cerebral Palsy and Myelomeningocele

Okurowska-Zawada, Bożena; Kułak, Wojciech; Otapowicz, Dorota; Sienkiewicz, Dorota; Paszko-Patej, Grażyna; Wojtkowski, Janusz

doi:10.1016/j.pediatrneurol.2011.04.006

Cited by 19 publications

(14 citation statements)

References 36 publications

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“…9,12,14,18,20,22,23,25 Meanwhile, other studies have noted that HRQOL in spina bifida patients is unrelated to age, functional ability, lesion level, sex, obesity, or sexual function. 1,8,13,14,15,20 Our investigation of several variables that were applicable to the entire clinic population found none that correlated with HRQOL score. These variables included whether the survey was completed by patient or caregiver, type of insurance, and patient sex and race.…”

Section: Effect Of Demographic Variablesmentioning

confidence: 75%

Assessing health-related quality of life in children with spina bifida

Rocque

Bishop

Scogin

et al. 2015

PED

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OBJECT The purpose of this study is to explore various aspects of health-related quality of life (HRQOL) in children with spinal dysraphism. METHODS The authors enrolled a prospective cohort of 159 patients from the multidisciplinary spina bifida clinic. Surveys were distributed to caregivers of patients with spina bifida who were 5 years old and older. Data were collected using the Health Utilities Index Mark 3 focusing on vision, speech, hearing, dexterity, ambulation, cognition, emotions, and pain. Each participant received an overall HRQOL utility score and individual domain subscores. These were correlated with demographic and treatment variables. Analysis was done using SPSS statistics (version 21). RESULTS There were 125 patients with myelomeningocele, 25 with lipomyelomeningocele, and 9 with other dysraphisms. Among patients with myelomeningocele, 107 (86%) had CSF shunts in place, 14 (11%) had undergone Chiari malformation Type II decompression, 59 (47%) were community ambulators, and 45 (36%) were nonambulatory. Patients with myelomeningocele had significantly lower overall HRQOL scores than patients with closed spinal dysraphism. Among patients with myelomeningocele, younger patients had higher HRQOL scores. Patients with impaired bowel continence had lower overall HRQOL scores. History of a ventriculoperitoneal shunt was associated with worse HRQOL (overall score, ambulation, and cognition subscores). History of Chiari malformation Type II decompression was associated with worse overall, speech, and cognition scores. Patients who could ambulate in the community had higher overall and ambulation scores. A history of tethered cord release was correlated with lower pain subscore. No association was found between sex, race, insurance type, or bladder continence and HRQOL. CONCLUSIONS Patients with myelomeningocele have significantly lower HRQOL scores than those with other spinal dysraphisms. History of shunt treatment and Chiari decompression correlate with lower HRQOL scores.

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Section: Effect Of Demographic Variablesmentioning

confidence: 75%

Assessing health-related quality of life in children with spina bifida

Rocque

Bishop

Scogin

et al. 2015

PED

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“…In the Sawin et al () study, the age was significantly related to only the parents' perceived overall HRQOL. In contrast, five small sample studies ( n =31–68) did not find a correlation between age and QOL (Cate et al ; Padua et al ; Oddson et al ; MacNeily et al ; Okurowska‐Zawada et al ). Furthermore, two other small sample studies (Muller‐Godeffroy et al ; Ramachandra et al ) have found that older children reported even less impact of their condition on HRQOL.…”

Section: Resultsmentioning

confidence: 95%

“…Revidierter Kinder Lebens qualitätsfragebogen (KINDL‐R, a German generic HRQOL instrument) was employed in two studies from Germany (Muller‐Godeffroy et al ) and on a study from Poland (Okurowska‐Zawada et al ). The German study reported diminished overall HRQOL compared with norm data, specifically in dimensions of emotional well‐being, self‐esteem and peer relations (Muller‐Godeffroy et al ).…”

Section: Resultsmentioning

confidence: 99%

“…The German study reported diminished overall HRQOL compared with norm data, specifically in dimensions of emotional well‐being, self‐esteem and peer relations (Muller‐Godeffroy et al ). Okurowska‐Zawada et al () compared HRQOL of children with MMC and cerebral palsy. Total results of HRQOL in both groups were comparable and lower than in the healthy population.…”

Section: Resultsmentioning

confidence: 99%

“…Total results of HRQOL in both groups were comparable and lower than in the healthy population. Children with MMC had lower scores in the domains of physical well‐being, emotional well‐being, self‐esteem and school compared with CP patients (Okurowska‐Zawada et al ).…”

Section: Resultsmentioning

confidence: 99%

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Health‐related quality of life in children with myelomeningocele: a systematic review of the literature

Bakanienė

Prasauskienė

Vaičienė-Magistris

2016

Child

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Myelomeningocele (MMC) is the most complex congenital birth defect compatible with life. To provide the best health care for children with MMC, clinicians and researchers have to understand health and functional status of their patients as well as factors influencing their quality of life (QOL). The objective is to review studies that assess health-related quality of life (HRQOL) and determinants of HRQOL in children with MMC. The data sources include MEDLINE, along with reference lists of relevant reviews and included articles. Study eligibility criteria are quantitative studies that assess HRQOL using validated HRQOL instrument. Participants include children aged 0-18 years with diagnosis of MMC or spina bifida. Risk of bias was assessed using the Hayden system for non-randomized studies. Narrative synthesis and tables of results of HRQOL studies were conducted. Children with MMC have decreased HRQOL compared with normative population. Physical HRQOL is the most exposed aspect of QOL, while discrepancies in psychosocial domains vary by study. Many determinants of QOL have been found, and it is still not clear which determinant can be described as the strongest predictor. Psychosocial factors are the most consistent determinants of HRQOL.Heterogeneous study sample size, study designs, determinant and outcomes measures limited synthesis of findings. The HRQOL in children with MMC is complex and mediated by a number of associated medical problems, together with a variety of psychosocial and environmental factors. Future research is needed (a) on the relation between complex medical problems, functional independence, parent's and clinician's expectation and HRQOL in children and (b) to assess the differences in HRQOL by social environment and healthcare system.

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Evaluating the Economic Impact of Neurodevelopmental Disability Intervention on the Family and Community

Zwicker¹,

Lamsal²

2023

Neurodevelopmental Pediatrics

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Quality of Life in Children and Adolescents With Cerebral Palsy and Myelomeningocele

Cited by 19 publications

References 36 publications

Assessing health-related quality of life in children with spina bifida

Assessing health-related quality of life in children with spina bifida

Health‐related quality of life in children with myelomeningocele: a systematic review of the literature

Evaluating the Economic Impact of Neurodevelopmental Disability Intervention on the Family and Community

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