How young can children reliably and validly self-report their health-related quality of life?: An analysis of 8,591 children across age subgroups with the PedsQL™ 4.0 Generic Core Scales

Varni, James W.; Limbers, Christine A.; Burwinkle, Tasha M.

doi:10.1186/1477-7525-5-1

Cited by 759 publications

(616 citation statements)

References 49 publications

(39 reference statements)

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“…However, the definition of these age groups is not straightforward. Although studies generally endorse the idea that any school-aged child can self-report his or her health [101] and despite evidence of reliable QL self-reports from children five years and older [102], in the context of the present review, it is suggested that school-aged children and adolescents with mental disorders can be clustered within the age groups of 8-12 years and 13-18 years old, respectively, as a harmonized guideline for research. This guideline is in agreement with the methodological options of previous world-renowned pediatric QL projects, such as KIDSCREEN [103], PedsQL [94] and DISABKIDS [97].…”

Section: Discussionmentioning

confidence: 99%

Applying a developmental approach to quality of life assessment in children and adolescents with psychological disorders: challenges and guidelines

Carona

Silva

Moreira

2014

Expert Review of Pharmacoeconomics & Outcomes Research

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Research on the quality of life (QL) of children/adolescents with psychological disorders has flourished over the last few decades. Given the developmental challenges of QL measurements in pediatric populations, the aim of this study was to ascertain the extent to which a developmental approach to QL assessment has been applied to pedopsychiatric QL research. A systematic literature search was conducted in three electronic databases (PubMed, PsycINFO,SocINDEX) from 1994 to May 2014. Quantitative studies were included if they assessed the self or proxy-reported QL of children/adolescents with a psychological disorder. Data were extracted for study design, participants, QL instruments and informants, and statistical approach to age-related specificities. The systematic review revealed widespread utilization of developmentally appropriate QL instruments but less frequent use of both self and proxy reports and an inconsistent approach to age group specificities.Methodological guidelines are discussed to improve the developmental validity of QL research for children/adolescents with mental disorders.

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Section: Discussionmentioning

confidence: 99%

Applying a developmental approach to quality of life assessment in children and adolescents with psychological disorders: challenges and guidelines

Carona

Silva

Moreira

2014

Expert Review of Pharmacoeconomics & Outcomes Research

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“…Children are found to be able to reliably and validly self-report their QoL by the age of 5 years if the instrument that is applied is age-appropriate (Varni, Limbers, & Burwinkle, 2007). Recent recommendations ) underline the importance of using developmentally appropriate language and techniques to ensure that outcomes have content validity.…”

Section: Can We Rely On Children's Reports Of Their Qol?mentioning

confidence: 99%

Quality of life in children with OCD before and after treatment

Weidle

Ivarsson

Thomsen

et al. 2014

Eur Child Adolesc Psychiatry

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Barn og ungdom med tvangslidelse (OCD): Komorbiditet og livskvalitet.OCD er kjennetegnet av ubehagelige tvangstanker og tidskrevende tvangshandlinger og forekommer hos 0,5 -3 % av barnebefolkningen. Ubehandlet får lidelsen et kronisk forløp hos 40 -75 %. Hovedmålsettingen for avhandlingen var å belyse to viktige aspekter av OCD: Samtidig forkommende andre tilstander (komorbiditet) og livskvalitet. Komorbiditet i form av autistiske trekk ble undersøkt hos barn og unge med OCD og sammenliknet med en kontrollgruppe fra den generelle befolkningen. Utvalget er hentet fra en svensk OCD klinikk (Göteborg), kontrollgruppen ble rekruttert i en middels stor by fra samme geografiske området. Autistiske symptomer forekom hos omtrent en femtedel av barn og unge med OCD og var dermed mye hyppigere enn i den generelle befolkningen. Allikevel hadde flertallet ikke slike symptomer som tyder på at kombinasjonen av autistiske symptomer og OCD forekommer i en undergruppe, men er ikke et generelt trekk ved OCD. l den internasjonalt pågående debatten om det er empirisk grunnlag for å betrakte tilstander som OCD, Tourettes syndrom, spiseforstyrrelser og autismespekterforstyrrelser som deler av et såkalt Obsessive-Compulsive Spectrum (OCSD) støtter våre resultater ikke klassifikasjon av autismespekterforstyrrelser som del av dette spektrum. At en undergruppe av barn med OCD har autistiske trekk må dog tas i betraktning når man skal skreddersy individuell tilpasset behandling for barn med OCD.Å utforske livskvalitet hos barn og unge med OCD er relevant, fordi det finnes et stort antall studier av livskvalitet hos voksne med OCD, men veldig få undersøkelser hos barn. Livskvalitet ble undersøkt hos barn og unge med OCD som deltok i NordLOTS studien (Nordic Longterm OCD treatment study) og sammenliknet med livskvalitet av skoleelever i Sør-Trøndelag. NordLOTS-studien er en nordisk multisenterstudie hvor enheter som behandler OCD hos barn og ungdom har anvendt samme prosedyre for utredning, behandling og evaluering. Studien har inkludert 135 barn og ungdom i alder 7-17 år med OCD. Pasientene ble behandlet med kognitiv atferdsterapi (KAT) med eksponering i en "standartdose" på 14 timer og ble deretter evaluert. Livskvalitet og sosial kompetanse var betydelig redusert hos barn og ungdom med OCD sammenlignet med den generelle befolkningen. Hos barn med komorbide lidelser beskrev foreldrene lavere livskvalitet enn hos de med bare OCD. Etter behandlingen rapporterte de som hadde effekt av behandlingen en livskvalitet i samme nivå som i den generelle befolkningen, mens de som ikke hadde effekt beskrev ingen forbedring av livskvaliteten. Basert på våre funn anbefales å anvende livskvalitets evaluering i klinikk og forskning for å få med et mål for barns og foreldrenes subjektive opplevelse i vurderingen og dermed en mer helhetlig forståelse av OCD hos barn og unge. Ovennevnte avhandling er funnet verdig til å forsvares offentlig for graden philosophiae doctor (ph.d.). Disputas finner sted i Auditoriet, Medisinsk Teknisk Forskningssenter, fredag 9...

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“…So, parents of preschool children become proxy assessors of their children's health. Moderate to good agreement was observed between parent proxy and child reporting in previous studies which had evaluated parent and child agreement on HRQOL assessment [4].…”

Section: Introductionmentioning

confidence: 63%

Health related quality of life instrument for preschool aged children in Sri Lanka: validation study

Jayakody

Senarath

Attygalle

2018

J. Postgrad. Inst. Med.

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Background and Objectives Health related quality of life of children encompasses the clinical status and the perception of health. The aim of the study was to adapt and validate the TAPQOL health related quality of life instrument for children in the age group of 3 to 4 years in Sri Lanka. Methods The English TAPQOL was adapted to the Sinhala language using a modified Delphi technique. A community based cross-sectional descriptive study was conducted among 492 children in the age range of 3 to 4 years in the Colombo District. A multistage cluster sampling method was used to select children. Mothers of children were interviewed using a structured questionnaire which included the adapted tool. In the analysis, factor extraction, reliability and discriminant validity were tested. Results Response rate was 94.9% (n=467). For factor extraction, 44 items were extracted and arranged into 12 subscales. Subscales represented different dimensions of health. All subscales had less than 2% of missing values indicating high acceptability. Cronbach's alpha was more than 0.7 in eleven subscales. High correlations were observed for test-retest reliability for responses 2 weeks apart. The instrument showed satisfactory discriminant validity with preterm born children obtaining low scores in eleven subscales compared to the term born group. Conclusions and recommendations The TAPQOL questionnaire could be used in the community setting for preschool aged children to assess health related quality of life.

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How young can children reliably and validly self-report their health-related quality of life?: An analysis of 8,591 children across age subgroups with the PedsQL™ 4.0 Generic Core Scales

Cited by 759 publications

References 49 publications

Applying a developmental approach to quality of life assessment in children and adolescents with psychological disorders: challenges and guidelines

Applying a developmental approach to quality of life assessment in children and adolescents with psychological disorders: challenges and guidelines

Quality of life in children with OCD before and after treatment

Health related quality of life instrument for preschool aged children in Sri Lanka: validation study

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