Medical, Social, and Economic Factors Associated with Health-Related Quality of Life in Canadian Children with Hydrocephalus

Kulkarni, Abhaya V.; Cochrane, D. Douglas; McNeely, P. Daniel; Shams, Iffat

doi:10.1016/j.jpeds.2008.04.068

Cited by 71 publications

(56 citation statements)

References 43 publications

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“…36 Previous work has suggested that the utility score for children with brain tumors is approximately 0.80 20 and for medulloblastoma survivors it is 0.94. 26 Those results are comparable to our cohort (with a HUI3 utility mean of 0.83 and median of 0.91), and they indicate a QOL that is substantially better than for children with hydrocephalus, 21 for example, and roughly similar to that of adolescents who were born with extremely low birth weight 33 and of the general population. 7 Although it is heartening that, on average, survivors of PFBT in this cohort have QOL outcomes within the range of the general population, it is also possible that, having survived the early treatment of a PFBT, this cohort holds a different view of outcome than the general population, which has not had to endure a life-threatening disease.…”

Section: Discussionsupporting

confidence: 80%

“…Previous studies in other populations have documented similar relationships of these socioeconomic variables with pediatric health outcome. 5,17,21 Caution needs to be exercised, however, in interpreting these factors, since Our study has important limitations. Our sample size, although one of the largest reported in a QOL study of PFBT, still limited the statistical power of our analyses, and so it is certainly possible that other important predictor variables were not identified in our study.…”

Section: Discussionmentioning

confidence: 99%

“…In children with hydrocephalus, some studies have observed an association between ventricle size and specific brain morphometric and cognitive changes, [8][9][10] but others have found no association with overall QOL outcome. 21,23 It is possible that a large current ventricular size is a marker for long-standing hydrocephalus prior to presentation (and, thus, for ventriculomegaly that is less likely to fully normalize after treatment). Among socioeconomic factors, income > $80,000 (roughly in the upper half of all Canadian families) was associated with better outcome, whereas decreased family functioning on the GF-FAD scale was associated with poor QOL outcome.…”

Section: Discussionmentioning

confidence: 99%

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Long-term quality of life in children treated for posterior fossa brain tumors

Kulkarni¹,

Piscione

Shams³

et al. 2013

PED

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Object In the face of increasing survival, quality of life (QOL) has become an important indicator of treatment success in children with posterior fossa brain tumors (PFBTs). The authors' objective was to assess the long-term QOL in survivors of PFBT. Methods The authors conducted a cross-sectional study of children who, between birth and age 18 years at diagnosis, had previously been treated at their institution for a PFBT. At the time of assessment for this study, children were between 5 and 19 years old and had received standard treatment for PFBT ending at least 6 months before the assessment. The QOL was measured with the Pediatric Quality of Life Inventory (PedsQL) generic score scales and the Health Utilities Index Mark 3 (HUI3). Multivariate analyses were used to assess several variables (patient related, treatment related, and socioeconomic) for association with QOL. Results A total of 62 children participated in the study (median age at assessment 11.9 years, interquartile range [IQR] 7.8–14.8, and median age at tumor diagnosis of 4.9 years, IQR 2.5–6.9). Median time since active treatment for their PFBT was 5.2 years (IQR 2.4–10.1). Tumor types included cerebellar pilocytic astrocytoma (45.2%), medulloblastoma (30.6%), ependymoma (11.3%), and brainstem astrocytoma (11.3%). Adjuvant therapy included chemotherapy (40.3%) or radiotherapy (14.5% focal and 21.0% craniospinal radiotherapy). Permanent treatment for hydrocephalus was required in 38.7% of the patients. Tumors recurred in 11.3%, requiring repeat treatment in these patients. The median HUI3 utility score was 0.91 (IQR 0.71–1.00) and the median PedsQL total score was 78.3 (IQR 64.1–92.4). Only the following variables were significantly associated with decreased QOL in multivariable model testing (all p < 0.05): need for permanent hydrocephalus treatment, large ventricle size, decreased family functioning, and lower family income. Conclusions As a group, long-term survivors of pediatric PFBT appear to have QOL indicators that are similar to those of the general population, although a reasonable minority of patients experience poor outcomes. Although several confounding variables likely remain in this retrospective study, important associations with QOL include the presence of hydrocephalus and socioeconomic factors. The study sample size, however, was limited and the presence of other important factors cannot be excluded.

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Section: Discussionsupporting

confidence: 80%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Long-term quality of life in children treated for posterior fossa brain tumors

Kulkarni¹,

Piscione

Shams³

et al. 2013

PED

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“…Previous work has suggested that these factors can impact the most important outcome, quality of life. 12,15 Future studies will need to examine this aspect in further detail. We also recognize that the current version of the ETVSS has not been externally validated and its predictive accuracy might be improved in the future with the inclusion of other predictive features, including preoperative imaging features and intraoperative findings.…”

Section: Discussionmentioning

confidence: 99%

Predicting who will benefit from endoscopic third ventriculostomy compared with shunt insertion in childhood hydrocephalus using the ETV Success Score

Kulkarni

Drake

Kestle

et al. 2010

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Object The authors recently developed and internally validated the ETV Success Score (ETVSS)—a simplified means of predicting the 6-month success rate of endoscopic third ventriculostomy (ETV) for a child with hydrocephalus, based on age, etiology of hydrocephalus, and presence of a previous shunt. A high ETVSS predicts a high chance of early ETV success. In this paper, they assess the clinical utility of the ETVSS by determining whether long-term survival outcomes for ETV versus shunt insertion are different within strata of ETVSS (low, moderate, and high scores). Methods A multicenter, international cohort of children (≤ 19 years old) with newly diagnosed hydrocephalus treated with either ETV (489 patients) or shunt insertion (720 patients) was analyzed. The ETVSS was calculated for all patients. Survival analyses with time-dependent modeling of the hazard ratios were performed. Results For the High-ETVSS Group (255 ETV-treated patients, 117 shunt-treated patients), ETV appeared to have a lower risk of failure right from the early postoperative phase and became more favorable with time. For the Moderate-ETVSS Group (172 ETV-treated patients, 245 shunt-treated patients), ETV appeared to have a higher initial failure rate, but after about 3 months the instantaneous risk of ETV failure became slightly lower than shunt failure (that is, the hazard ratio became < 1). For the Low-ETVSS Group (62 ETV-treated patients, 358 shunt-treated patients), the early risk of ETV failure was much higher than the risk of shunt failure, but the instantaneous risk of ETV failure became lower than the risk of shunt failure at about 6 months following surgery (the hazard ratio became < 1). Conclusions Across all ETVSS strata, the risk of ETV failure becomes progressively lower compared with the risk of shunt failure with increasing time from the surgery. In the best ETV candidates (ETVSS ≥ 80), however, the risk of ETV failure is lower than the risk of shunt failure very soon after surgery, while for less-than-ideal ETV candidates (ETVSS ≤ 70), the risk of ETV failure is initially higher than the risk of shunt failure and only becomes lower after 3–6 months from surgery. These results need to be confirmed by larger, prospective, and preferably randomized studies.

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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%

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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Medical, Social, and Economic Factors Associated with Health-Related Quality of Life in Canadian Children with Hydrocephalus

Cited by 71 publications

References 43 publications

Long-term quality of life in children treated for posterior fossa brain tumors

Long-term quality of life in children treated for posterior fossa brain tumors

Predicting who will benefit from endoscopic third ventriculostomy compared with shunt insertion in childhood hydrocephalus using the ETV Success Score

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

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