Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance

Davis, Elise; Nicolas, C; Waters, Elizabeth; Cook, Kay; Gibbs, Lisa; Gosch, Angela; Ravens‐Sieberer, Ulrike

doi:10.1007/s11136-007-9187-3

Cited by 211 publications

(196 citation statements)

References 35 publications

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“…Consistently lower proxy-than selfreports may indicate that parents' ratings could be influenced by their concerns and worries or by experienced burdens (e.g., burdens that are due to concurrently having to work and care for their family), or by their own health conditions. Furthermore, it is possible that this general pattern occurs because (1) children tend to provide more extreme answers than their parents; and/or (2) children and parents differ with respect to the reasons they provide for their answers [35]-a pattern that possibly occurs independent of the health status of the child. The higher selfversus proxy ratings also were confirmed by the method of Sattoe et al [13] and were in line with this particular study.…”

Section: Discussionmentioning

confidence: 99%

Assessing parent–child agreement in health-related quality of life among three health status groups

Dey

Landolt

Mohler‐Kuo

2012

Soc Psychiatry Psychiatr Epidemiol

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Purpose To examine parent-child agreement regarding a child's health-related quality of life (HRQOL) among three health status groups. Methods Parent-child agreement was evaluated for three health status groups of a population-based sample: (1) children with mental health problems (N = 461), (2) children with physical health problems (N = 281), and (3) healthy controls (N = 699). The KIDSCREEN-27 was used to assess HRQOL. The children were 9-14 years of age. Results Intraclass correlation coefficients were mostly good across all HRQOL scores and health status groups. This relatively high level of agreement was also reflected by the following findings: first, the AGREE group was the largest in three out of five HRQOL subscales in all health status groups; second, when disagreement occurred, it was often minor in magnitude. Despite this relatively high level of agreement, the means of self-ratings were significantly higher for all HRQOL scores and health status groups than the means of proxy ratings. These higher self-ratings were especially pronounced among children with mental health problems in certain HRQOL domains.Conclusions Even though the level of parent-child agreement regarding a child's HRQOL is relatively high, it should be considered that children (especially those with mental health problems) often report better HRQOL than their parents. It is, therefore, highly recommended that both proxy-and self-ratings are used to evaluate a child's HRQOL comprehensively.Keywords Health-related quality of life Á Parent-child agreement Á Mental Á Physical

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Section: Discussionmentioning

confidence: 99%

Assessing parent–child agreement in health-related quality of life among three health status groups

Dey

Landolt

Mohler‐Kuo

2012

Soc Psychiatry Psychiatr Epidemiol

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“…Recently, we conducted a qualitative study using a think-aloud methodology with parents and children (8-12y) completing KIDSCREEN. 2 The results demonstrated that there was discordance between parents and DOI: 10.1111/j.1469-8749.2008.0 016 x . 7…”

mentioning

confidence: 94%

Quality of life of children with CP: condition‐specific instrument and proxy reports

Davis¹,

Waters²,

Mackinnon³

et al. 2008

Develop Med Child Neuro

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children in terms of their scores and the reasoning for their answer. Some parent-child pairs provided the same score but different reasoning. In one case, both parent and child rated the item 'being in a good mood' as 'quite often'. However, whereas the parent's answer was based on sporting activities and school performance by saying 'when she's played a good game of netball or done something good in school…then she's in a good mood'; the child responded 'quite often' rather than 'very often' because she 'got sunburnt'. The study also highlighted that children tended to have different response styles to parents, where, for example, children tended to provide extreme scores (highest or lowest score) and base their response on one single example, more than parents. The results from this study highlight that for children, because of their level of cognitive development, it is important to obtain their perspective and their parents' perspective. Where a child cannot self-report, it is also important to not exclude them from a QOL study, but rather to measure QOL using proxy report, while acknowledging the limitations associated with proxy reports.Finally, the current study found that impairments were not associated with six KIDSCREEN domains, including psychological well-being and social support and peers. In support of Dickinson et al.'s paper, we have also examined this relationship using a questionnaire that, like KIDSCREEN, assesses subjective perceptions of QOL (Cerebral Palsy Quality of Life Questionnaire) and demonstrated that social and emotional domains (r=0.18, r=0.22 respectively) were less strongly correlated with functioning than physical health domains (r=0.39, r=0.62). 3 Although these results are inconsistent with studies that measure QOL using the Pediatric Quality of Life Inventory or Child Health Questionnaire, it is proposed that the correlations between functioning and QOL are inflated, when the QOL items focus on a child's difficulties or limitations (i.e. difficulty moving limbs, difficulty completing daily living tasks).

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“…söz konusudur (17,18) . Özellikle yaş ve ağır hastalık durumlarında çocuk hakkında daha etkili bilgi alabilmenin önemli bir yolu vekil-ebeveyn değerlendirmesidir (18) .…”

Section: Introductionunclassified

“…Özellikle sorgulanan kavramlar benzer şekilde algılansa bile verilen yanıtların birbiriyle uyumsuz olabileceği, çünkü çocuğun çevresiyle bir bütün olarak gerçekliği algılayışı ile ebeveynin algı-layışı arasındaki farklılığın elde edilen bu uyumsuzlukta belirleyici olduğu belirtilmektedir (17,19) . Bu amaçla geliştirilen ölçeklerin güvenilirliğinin bir gös-tergesi de vekil ile öz bildirim sürümlerindeki tutarlı-lıktır (18) .…”

Section: Introductionunclassified

Comparison of the self and the proxy versions of the KIDSCREEN quality of life scale: To what extend can parents predict quality of life of their children?

Baydur¹,

Ergin²,

Gerçeklioğlu³

et al. 2016

Buch

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ÖZAmaç: Bu araştırmanın amacı KIDSCREEN sağlıkla ilişkili yaşam kalitesi (SYK) ölçeği öz bildirim yanıt-ları ile vekil yanıtları arasındaki uyumu karşılaştırmaktır. Yöntemler: Araştırma Manisa'da yer alan 6 okulda 8-18 yaş arası 662 çocuk/genç, 543 ebeveyn üzerinde yürütülmüş kesitsel bir araştırmadır. Araştırmada katılımcıların sosyodemografik özellikleri belirlenmiş ve KIDSCREEN yaşam kalitesi anketi uygulanmıştır. Araştırmanın analizinde temel tanımlayıcı bulgular ile öz bildirim-vekil değerlendirmesinin birlikteliğini belirlemek için korelasyon analizi, sınıfiçi korelasyon katsayıları (Intraclass Correlation Coeffience, ICC), Bland-Altman grafiği incelenmiştir. Ayrıca çocuğun/ gencin yaşam kalitesi puanlarını vekil/ebeveyn ölçümünün ne kadar açıklayabildiğini belirlemek için doğ-rusal regresyon analizi yapılmıştır. Bulgular: Katılan çocukların %49,4'ü erkek, yaş ortalaması 13,1±2,4'tür. SYK öz bildirim ve vekil yanıt-larının korelasyon katsayısının 0,27 ile 0,52 arasında, ICC değerleri dağılımı ise 0,43 ile 0,68 arasındadır. Ebeveyn yanıtlarının çocuğun/gencin yaşam kalitesini öngörebilmedeki tanımlayıcılık katsayısının (R2) 0,10 ile 0,41 arasında belirlenmiştir. Bland-Altman grafiği KIDSCREEN-52 ve KIDSCREEN-10 için sistematik hatadan uzak, sıfırın etrafında dağılmakta ve ±2 standart sapma aralığı içerisinde yer almaktadır. Sonuç: KIDSCREEN yaşam kalitesi ölçeği öz bildirim-vekil sürümü orta düzeyde birliktelik ve uyum gösterdiği bulunmuştur. Ebeveyn-çocuk değerlendirmelerinde özellikle Sosyal kabul-zorbalık boyutunda tutarsızlık vardır. Uzun sürümde (KIDSCREEN-52), ebeveynler duygudurum ve duygulanım boyutunda çocuklarından daha yüksek skor verirken, çocuklar kendi bedensel iyilik durumlarını ebeveynlerinden daha olumlu algılamaktadırlar. İndeks sürümde (KIDSCREEN-10) ise çocuk-ebeveyn değerlendirmesi tutarlıdır.Anahtar kelimeler: Yaşam kalitesi, öz bildirim değerlendirmesi, vekil değerlendirmesi, tutarlılık ABSTRACT Objective: The purpose of this study is to compare the agreement between self and proxy responses of the KIDSCREEN health-related quality of life (HRQOL). Methods: This cross sectional study was carried out on 662 children/adolescents aged between 8 to 18 years and 543 parents in 6 schools of Manisa city center, Turkey. In this study sociodemographic characteristics of the participants were determined, and KIDSCREEN quality of life questionnair forms were applied. Following descriptive findings, Pearson correlation analyses, Intraclass Correlation Coefficients and Bland-Altman graphs were performed in the statistical analyses so as to determine the association between basic descriptive findings, self-, and proxy responses. In addition Linear Regression analysis was performed in order to show the extend of proxy/parents' evaluations in the explanation of children's, and adolescents! HRQOL. Results: 49.4 %of the children were male; and mean age was 13.1±2.4 years. Correlation coefficients and ICCs of self and proxy HRQOL evaluations were between 0.27 to 0.52 ranging between 0.43 to 0.68 respecti...

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Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance

Cited by 211 publications

References 35 publications

Assessing parent–child agreement in health-related quality of life among three health status groups

Assessing parent–child agreement in health-related quality of life among three health status groups

Quality of life of children with CP: condition‐specific instrument and proxy reports

Comparison of the self and the proxy versions of the KIDSCREEN quality of life scale: To what extend can parents predict quality of life of their children?

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