Quality of Life in Pediatric Neurosurgery: Comparing Parent and Patient Perceptions

Goethe, Eric A.; LoPresti, Melissa A.; Zhao, Michelle; Brayton, Alison; Gadgil, Nisha; Pan, I‐Wen; Lam, Sandi

doi:10.1016/j.wneu.2019.10.037

Cited by 5 publications

(4 citation statements)

References 10 publications

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“…The child HEAR‐QL is a tool completed by the child, thus directly measuring their own perceptions. While parent and teacher involvement are important in the workup and treatment of hearing loss, many studies have indicated that parent perceptions are poor predictors of their children's QOL 25–28 . However, younger children completing the child HEAR‐QL did experience some difficulty completing the questionnaire on their own.…”

Section: Discussionmentioning

confidence: 99%

“…While parent and teacher involvement are important in the workup and treatment of hearing loss, many studies have indicated that parent perceptions are poor predictors of their children's QOL. 25 , 26 , 27 , 28 However, younger children completing the child HEAR‐QL did experience some difficulty completing the questionnaire on their own. In many instances, a study staff member had to read items to the child to complete the 5‐point scale ranging from “Never” to “Always.” In future studies to improve hearing‐related quality of life assessment for children, it may be valuable to consider a reduced scale for response choices.…”

Section: Discussionmentioning

confidence: 99%

“…An additional strength of our study was the direct self‐reporting of HEAR‐QL, instead of relying on a parent or guardian for answers. 26 , 27 , 28 , 32 Furthermore, all enrolled students of the target population participated in the study, which should minimize the potential for selection bias in estimating the difference in median quality of life score by hearing loss, regardless of how strongly students felt about the effect of hearing loss on their quality of life.…”

Section: Discussionmentioning

confidence: 99%

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Hearing‐related quality of life in children and adolescents in rural Alaska

Hicks

Robler

Simmons

et al. 2022

Laryngoscope Investig Oto

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Objective: This study evaluated the Hearing Environments and Reflection on Quality of Life (HEAR-QL) questionnaire in rural Alaska, including an addendum crafted through community feedback to reflect the local context. The objectives were to assess whether HEAR-QL score was inversely correlated with hearing loss and middle ear disease in an Alaska Native population. Methods:The HEAR-QL questionnaires for children and adolescents were administered as part of a cluster randomized trial in rural Alaska from 2017 to 2019.Enrolled students completed an audiometric evaluation and HEAR-QL questionnaire on the same day. A cross-sectional evaluation of questionnaire data was utilized.Results: A total of 733 children (ages 7-12 years) and 440 adolescents (ages ≥13 years) completed the questionnaire. Median HEAR-QL scores were similar among children with and without hearing loss (Kruskal-Wallis, p = .39); however, adolescent HEAR-QL scores significantly decreased with increasing hearing loss (p < .001). Median HEAR-QL scores were significantly lower in both children (p = .02) and adolescents (p < .001) with middle ear disease compared with those without. In both children and adolescents, the addendum scores were strongly correlated with total HEAR-QL score (ρ Spearman = 0.72 and 0.69, respectively). Conclusions:The expected negative association between hearing loss and HEAR-QL score was observed in adolescents. However, there was significant variability that could not be explained by hearing loss, and further investigation is warranted. The expected negative association was not observed in children.HEAR-QL scores were associated with middle ear disease in both children and adolescents, making it potentially valuable in populations where the prevalence of ear infections is high.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Hearing‐related quality of life in children and adolescents in rural Alaska

Hicks

Robler

Simmons

et al. 2022

Laryngoscope Investig Oto

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“…Many organizations, e.g., the European Medicines Agency, emphasize the need to assess HRQOL in patients with chronic diseases [15]. The effect of the disease on the quality of life (QoL) of children has been demonstrated in various chronic diseases such as cancer [16], rheumatic diseases [17], asthma [18], diabetes mellitus [19], neurological diseases including neurosurgical patients [20], fibromyalgia [21], demyelinating diseases [22], spinal muscular atrophy [23], cerebral palsy [24], or epilepsy [25].…”

Section: Introductionmentioning

confidence: 99%

Quality of Life of Children and Adolescents with Multiple Sclerosis—A Literature Review of the Quantitative Evidence

Mrosková

Klímová

Majerníková

et al. 2021

IJERPH

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Background: Multiple sclerosis (MS) is a chronic disease of the central nervous system that also develops in patients under 18 years of age. The disease negatively affects the quality of life (QoL) of children and adolescents. We conducted a literature review. The aim of the review was to identify the QoL of pediatric patients with MS and assess the factors determining their QoL. Methods: We analyzed studies published between 2000 and 2020 in PubMed, Scopus, Science Direct, Web of Science, and EBSCO databases. Results: In all, 17 studies were included in the review. The most common tool in assessing QoL was the generic module PedsQL. The range of mean/median global score of QoL was 53.8–81.7. The worst QoL was dominantly reported in the school and emotional spheres, on the contrary, the disease’s least determined area of QoL was the social and physical dimension. In particular, disability and fatigue were important predictors of QoL. Conclusions: MS negatively affects the school and emotional spheres in particular, so it is important to pay greater attention to these spheres of life of MS patients. As the review studies pay insufficient attention to the analysis of positive factors and their impact on the QoL of MS patients, research should integrate these phenomena. The use of MS-targeted tools in future research in the pediatric MS population is also appropriate.

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