Medical and socioeconomic predictors of quality of life in myelomeningocele patients with shunted hydrocephalus

Karmur, Brij; Kulkarni, Abhaya V.

doi:10.1007/s00381-017-3691-8

Cited by 17 publications

(10 citation statements)

References 48 publications

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“…Studies have confirmed the association between the severity of the condition and QoL. In our analysis, the percentage of patients with hydrocephalus was 43%, which is well below the usual range of 70-86% [30]. The explanation for this is that other studies included all spinal dysraphisms, while our sample only focused on myelomeningocele.…”

Section: Discussioncontrasting

confidence: 41%

The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study

Rozensztrauch

Iwańska

Bagłaj

2021

IJERPH

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Objectives: To investigate the relationship between the defects and symptoms caused by myelomeningocele (MMC) and quality of life. Design: A cross-sectional questionnaire survey. Methods: The subjects were 52 parents of children with MMC. Structured questionnaires were used: the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQLTM 4.0) and a Study-Specific Questionnaire (SSQ). Results: The overall PedsQLTM 4.0 score was 56.4 (SD ± 14.7). A strong, significant negative correlation was found between the children’s age and emotional functioning. Functioning in this area deteriorated with age by a mean of 1.5 points per year of age. Children with no hydrocephalus functioned significantly better than those with this defect in the physical, social, and school areas (p < 0.05). Foot deformities significantly (p = 0.033) adversely affected the children’s physical functioning. Living in a single-parent family had no statistically significant impact on functioning in any of the areas analyzed (p > 0.05). Conclusion: Understanding the QoL of children with MMC and identifying its determinants may help in planning interventions to minimize the adverse impact of the illness.

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Section: Discussioncontrasting

confidence: 41%

The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study

Rozensztrauch

Iwańska

Bagłaj

2021

IJERPH

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“…The HOQ has been used in a number of studies that have examined health outcomes in children with hydrocephalus. 8,[23][24][25] Scoring of the HOQ provides scores from 0.0 (worse health status) to 1.0 (better health status). 26 Internal consistency from the initial test development, measured with Cronbach α, was 0.94 for overall health, 0.93 for physical health, 0.82 for socialemotional health, and 0.91 for cognitive health.…”

Section: Methodsmentioning

confidence: 99%

Social-emotional functioning in pediatric hydrocephalus: comparison of the Hydrocephalus Outcome Questionnaire to the Behavior Assessment System for Children

Wall

Kestle

Fulton

et al. 2021

Journal of Neurosurgery: Pediatrics

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OBJECTIVE Hydrocephalus can impact all areas of health, including physical, cognitive, and social-emotional functioning. The social-emotional health of children who have had surgery for hydrocephalus is not well characterized. In this study, the authors sought to examine social-emotional functioning using the Behavior Assessment System for Children, Third Edition (BASC-3) and the Hydrocephalus Outcome Questionnaire (HOQ) in 66 children aged 5 to 17 years. METHODS Caregivers of pediatric patients with hydrocephalus completed the BASC-3 and the HOQ. BASC-3 internalizing, externalizing, and executive functioning caregiver-reported scores were compared with the BASC-3 normative sample using one-sample t-tests to evaluate overall social-emotional functioning. BASC-3 scores were correlated with the social-emotional domain of the HOQ using Pearson’s r to determine if the HOQ accurately captured the social-emotional functioning of children with hydrocephalus in a neurosurgery setting. BASC-3 and HOQ scores of children with different etiologies of hydrocephalus were compared using the Kruskal-Wallis one-way analysis of variance to determine if differences existed between the following etiologies: intraventricular hemorrhage secondary to prematurity, myelomeningocele, communicating congenital hydrocephalus, aqueductal stenosis, or other. RESULTS Children with hydrocephalus of all etiologies had more difficulties with social-emotional functioning compared with normative populations. Children with different hydrocephalus etiologies differed in executive functioning and overall HOQ scores but not in internalizing symptoms, externalizing symptoms, or social-emotional HOQ scores. The social-emotional domain of the HOQ correlated more strongly with the BASC-3 than did the physical and cognitive domains. CONCLUSIONS These results have provided evidence that children who have had surgery for hydrocephalus may be at increased risk of social-emotional and behavioral difficulties, but etiology may not be particularly helpful in predicting what kinds or degree of difficulty. The results of this study also support the convergent and divergent validity of the social-emotional domain of the HOQ.

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“…Tilford et al [56] reported that lesion location in childhood SB had a significant impact on overall utility (p < 0.01); individuals with sacral lesions had the highest overall mean utility (0.61; ±0.26). Two studies reported correlation between clinical factors and utility scores in SB [21,38]. Anatomical myelomeningocele level was found to have a significant effect on the HUI utility scores of children with myelomeningocele and shunted hydrocephalus (mean HUI score = 0.03; 95% CI 0.01 to 0.05; p = 0.01) [38], with lower myelomeningocele level showing association with higher utility scores.…”

Section: Spina Bifida Known-group Analysesmentioning

confidence: 98%

“…Two studies reported correlation between clinical factors and utility scores in SB [21,38]. Anatomical myelomeningocele level was found to have a significant effect on the HUI utility scores of children with myelomeningocele and shunted hydrocephalus (mean HUI score = 0.03; 95% CI 0.01 to 0.05; p = 0.01) [38], with lower myelomeningocele level showing association with higher utility scores. A similar trend was reported by Young et al [21], who found that the most important single factor contributing to utility outcomes in SB was surgical lesion level, which was responsible for between 18% (AQoL) and 40% (HUI3) of variance in utility scores.…”

Section: Spina Bifida Known-group Analysesmentioning

confidence: 98%

“…The sample sizes of relevant study groups ranged from 13 [15] to 770 [44]. Fourteen studies included data relating to CP [22, 33, 35, 36, 39, 46, 48-51, 53, 55, 57, 58], six included data relating to SB [21,38,51,52,54,56] and five included data relating to childhood hydrocephalus [40][41][42][43]45]. Data for a range of other relevant conditions were also found in either single studies or from extractable subgroups, these included muscular dystrophy [34,44], spinal muscular atrophy [47], Morquio A syndrome [37], congenital clubfoot [59] and microcephaly [51].…”

Section: Study and Patient Characteristicsmentioning

confidence: 99%

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Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness

2020

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Introduction: Mobility impairment is the leading cause of disability in the UK. Individuals with congenital mobility impairments have unique experiences of health, quality of life and adaptation. Preference-based outcomes measures are often used to help inform decisions about healthcare funding and prioritisation, however the applicability and accuracy of these measures in the context of congenital mobility impairment is unclear. Inaccurate outcome measures could potentially affect the care provided to these patient groups. The aim of this systematic review was to examine the performance of preference-based outcome measures for the measurement of utility values in various forms of congenital mobility impairment. Methods: Ten databases were searched, including Science Direct, CINAHL and PubMed. Screening of reference lists and hand-searching were also undertaken. Descriptive and narrative syntheses were conducted to combine and analyse the various findings. Results were grouped by condition. Outcome measure performance indicators were adapted from COSMIN guidance and were grouped into three broad categories: validity, responsiveness and reliability. Screening, data extraction and quality appraisal were carried out by two independent reviewers. Results: A total of 31 studies were considered eligible for inclusion in the systematic review. The vast majority of studies related to either cerebral palsy, spina bifida or childhood hydrocephalus. Other relevant conditions included muscular dystrophy, spinal muscular atrophy and congenital clubfoot. The most commonly used preference-based outcome measure was the HUI3. Reporting of performance properties predominantly centred around construct validity, through known group analyses and assessment of convergent validity between comparable measures and different types of respondents. A small number of studies assessed responsiveness, but assessment of reliability was not reported. Increased clinical severity appears to be associated with decreased utility outcomes in congenital mobility impairment, particularly in terms of gross motor function in cerebral palsy and lesion level in spina bifida. However, preference-based measures exhibit limited correlation with various other condition-specific and clinically relevant outcome measures.(Continued on next page) Conclusion: Preference-based measures exhibit important issues and discrepancies relating to validity and responsiveness in the context of congenital mobility impairment, thus care must be taken when utilising these measures in conditions associated with congenital mobility impairments.

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Medical and socioeconomic predictors of quality of life in myelomeningocele patients with shunted hydrocephalus

Abstract: Myelomeningocele patients with shunted hydrocephalus can have a poor health-related quality of life. Our results indicate a strong association of income and family functioning on quality of life, along with younger age and lower level of myelomeningocele.

Cited by 17 publications

References 48 publications

The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study

The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study

Social-emotional functioning in pediatric hydrocephalus: comparison of the Hydrocephalus Outcome Questionnaire to the Behavior Assessment System for Children

Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness

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