Health-related quality of life in children and adolescents with spinal dysraphism: results from a Taiwanese sample

Wang, Jia Chi; Lai, Chih Jou; Wong, Tai-Tong; Liang, Muh Lii; Chen, Hsin Hung; Chan, Rai-Chi; Yang, Tsui Fen

doi:10.1007/s00381-013-2117-5

Cited by 20 publications

(14 citation statements)

References 25 publications

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“…The CHQ‐PF50, a parent‐report instrument, was used to measure children's HRQOL in nine studies. Paralleling findings of studies that have used PedsQL, parents of children with MMC reported significantly lower scores on the physical and psychosocial aspects of CHQ‐PF50 than did parents of healthy children (Rendeli et al ; Wood et al ; Bartonek et al ; Tezcan et al ; Wang et al ; Turkucuoglu & Simsek ; Midrio et al ). Few studies indicated that MMC did not affect the following aspects of patient's life: self‐esteem, behaviour (Danielsson et al ) and family cohesion (Danielsson et al ; Law et al ).…”

Section: Resultssupporting

confidence: 55%

“…Six studies using generic HRQOL instruments indicated no significant relationships between bowel or bladder continence and children's HRQOL (Lemelle et al ; Dodson et al ; Ramachandra et al ; Freeman et al ; Muller‐Godeffroy et al ; Rocque et al ). In contrast, another three studies that also used the generic HRQOL measurements confirmed such correlations (Rendeli et al ; Olesen et al ; Wang et al ).…”

Section: Resultsmentioning

confidence: 96%

“…Finally, studies of Wang et al () and Cate et al () emphasized that the number of associated medical problems, indicating their severity, was related to both physical and psychosocial health.…”

Section: Resultsmentioning

confidence: 99%

“…In six studies exploring the relationship of hydrocephalus and shunt status to HRQOL, children who had a history of shunted hydrocephalus had significantly poorer HRQOL across nearly all domains compared with those without shunted hydrocephalus (Kulkarni et al ; Flanagan et al ; Ramachandra et al ; Wang et al ; Rocque et al ; Wide et al ). Prolonged treatment for cerebrospinal fluid shunt obstruction was one of the most important determinants for lower HRQOL in the study of Kulkarni 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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Section: Resultssupporting

confidence: 55%

Section: Resultsmentioning

confidence: 96%

Section: Resultsmentioning

confidence: 99%

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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“…Patients with a MMC had lower scores on physical and psychosocial aspects. Children with a higher lesion level had poorer physical health, but not poorer psychosocial health 13 . Studies have described the capacity, or lack thereof, of ambulation based on the lesion level, cognition, functional independence and quality of life separately, but no studies have described, simultaneously, gross motor function, cognition, functional independence and quality of life, or investigated their relationships in patients with MMC.…”

mentioning

confidence: 84%

The relationship between motor function, cognition, independence and quality of life in myelomeningocele patients

Luz

Moura

Becker

et al. 2017

Arq. Neuro-Psiquiatr.

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Motor function, cognition, functional independence and quality of life have been described in myelomeningocele patients, but no study has investigated their relationships. We aimed to investigate the relationships between motor function, cognition, functional independence, quality of life, age, and lesion level in myelomeningocele patients, and investigate the influence of hydrocephalus on these variables. We assessed 47 patients with the Gross Motor Function Measure (motor function), Raven’s Colored Progressive Matrices (cognition), Pediatric Evaluation of Disability Inventory (functional independence) and the Autoquestionnaire Qualité de vie Enfant Imagé (quality of life). Spearman’s correlation tests determined relationships between the variables. The Friedman ANOVAs determined the influence of hydrocephalus. Motor function was strongly related to mobility and lesion level, and moderately related to cognition, self-care and social function. Cognition and quality of life were moderately related to functional independence. Age correlated moderately with functional independence and quality of life. Hydrocephalus resulted in poorer motor/cognitive outcomes and lower functional independence.

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Maternal-fetal surgery for myelomeningocele: some thoughts on ethical, legal, and psychological issues in a Western European situation

2017

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Health-related quality of life in children and adolescents with spinal dysraphism: results from a Taiwanese sample

Abstract: Children and adolescents with MMC have reduced HRQL compared with those with LMMC. Children and adolescents with more associated medical problems have the greatest risk of diminished physical and psychosocial well-being.

Cited by 20 publications

References 25 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

The relationship between motor function, cognition, independence and quality of life in myelomeningocele patients

Maternal-fetal surgery for myelomeningocele: some thoughts on ethical, legal, and psychological issues in a Western European situation

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