Shunted Hydrocephalus Has a Significant Impact on Quality of Life in Children With Spina Bifida

Ramachandra, Puneeta; Palazzi, Kerrin; Skalsky, Andrew J.; Marietti, Sarah; Chiang, George

doi:10.1016/j.pmrj.2013.05.011

Cited by 27 publications

(21 citation statements)

References 21 publications

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“…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: 97%

“…The PedsQL child and parent formats were the most frequently used generic instruments in children. Nearly all of the studies that used the PedsQL found lower scores on all scales in the MMC children group as compared with the reference samples of healthy children (Oddson et al ; Abresch et al ; Flanagan et al ; Sumpter et al, ; Johansen et al ; Freeman et al ; Olesen et al ; Ramachandra et al ; Wide et al ; Murray et al ). The greatest reduction in HRQOL was found in physical functioning and the smallest one was in emotional functioning (Oddson et al ; Abresch et al, ; Sumpter et al ; Johansen et al ; Freeman et al ).…”

Section: Resultsmentioning

confidence: 98%

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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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Section: Resultsmentioning

confidence: 97%

Section: Resultsmentioning

confidence: 98%

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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“…In studies with children and their caregivers, some researchers have noted that poor HRQOL is clinically related to lesion level, age, ambulatory ability, family function, and rehabilitation treatment team integration. 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.…”

Section: Effect Of Demographic Variablesmentioning

confidence: 99%

“…20,22 As such, the importance of studying health-related quality of life (HRQOL) in addition to traditional outcome measures in the spina bifida population is being increasingly recognized. 18 HRQOL focuses on how each patient assesses the influence of a chronic health issue on his/her physical and psychosocial functioning. 17,21 The goal of the present study was to characterize the quality of life (QOL) of pediatric patients with spina bifida who were seen at a multidisciplinary, comprehensive outpatient clinic within a large medical center.…”

mentioning

confidence: 99%

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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“…A previous small study in San Diego9 found that shunted hydrocephalus was significantly associated with poorer self-reported physical health summary scores, but other studies have not replicated this finding 13 18. Hydrocephalus has been associated with increased functional dependence19 and poorer neurocognitive outcomes 20.…”

Section: Discussionmentioning

confidence: 94%

Quality of life among children with spina bifida in Uganda

et al. 2017

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Shunted Hydrocephalus Has a Significant Impact on Quality of Life in Children With Spina Bifida

Abstract: Shunted hydrocephalus has a negative impact on the perception of quality of life, an effect that may be attenuated by age. Further study and more-specific measurement tools are needed to better understand health-related quality of life in children with spina bifida.

Cited by 27 publications

References 21 publications

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

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

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

Quality of life among children with spina bifida in Uganda

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