Assessment of Health-Related Quality of Life in Children: A Review of Conceptual, Methodological, and Regulatory Issues

Matza, Louis S.; Swensen, Andrine R.; Flood, Emuella; Secnik, Kristina; Leidy, Nancy Kline

doi:10.1111/j.1524-4733.2004.71273.x

Cited by 584 publications

(586 citation statements)

References 68 publications

(84 reference statements)

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“…QoL instruments should use items corresponding to experiences, activities and contexts that are directly relevant to the age of the sample (Matza et al, 2004). 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).…”

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

confidence: 99%

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

confidence: 99%

“…However, the following two central aspects of this construct are encompassed in most definitions (Matza, Swensen, Flood, Secnik, & Leidy, 2004). First, HRQoL is subjective, and therefore it should be assessed from the patient's perspective whenever possible.…”

mentioning

confidence: 99%

Quality of life in children with OCD before and after treatment

Weidle

Ivarsson

Thomsen

et al. 2014

Eur Child Adolesc Psychiatry

View full text Add to dashboard Cite

show abstract

“…Third, not all authors used children's self-rating of their HRQOL. Precisely because of the subjectivity of the HRQOL construct, it should -whenever possible -also be self-rated [7]. Admittedly, the cognitive abilities of very young children, and specific characteristics of particular mental disorders (e.g., limited reading ability in children with learning disorders) may hamper such self-ratings [10; 11].…”

Section: Limitations Of Existing Studies and Recommendations For Furtmentioning

confidence: 99%

Health-related quality of life among children with mental disorders: a systematic review

2012

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PURPOSE: To systematically review studies about the quality of life (QOL) of children with various mental disorders relative to healthy controls and to describe limitations in these studies. METH-ODS: Relevant articles were searched using different databases, by checking reference lists and contacting experts. We included articles that either compared children with mental disorders to healthy controls/norm values or made such a comparison possible. RESULTS: Sixteen out of 4,560 articles met the pre-defined inclusion criteria. These studies revealed that the QOL of children with various mental disorders is compromised across multiple domains. The largest effect sizes were found for psychosocial and family-related domains and for the total QOL score, whereas physical domains generally were less affected. The most important limitations in the existing literature include the lack of study samples drawn from the general population, the failure to use self-ratings, not considering item overlap between measuring QOL and assessing for the presence of a particular mental disorder, and not determining whether the children were receiving medication for their mental disorder. CONCLUSIONS: Children with mental disorders experience a considerable reduction in QOL across various domains. Research studies that avoid previous limitations are crucial to fill existing knowledge gaps. Results: Sixteen out of 4,560 articles met the pre-defined inclusion criteria. These studies revealed that the QOL of children with various mental disorders is compromised across multiple domains. The largest effect sizes were found for psychosocial and family-related domains and for the total QOL score, whereas physical domains generally were less affected.The most important limitations in the existing literature include the lack of study samples drawn from the general population, the failure to use self-ratings, not considering item overlap between measuring QOL and assessing for the presence of a particular mental disorder, and not determining whether the children were receiving medication for their mental disorder. Conclusions:Children with mental disorders experience a considerable reduction in QOL across various domains. Research studies that avoid previous limitations are crucial to fill existing knowledge gaps.

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“…The first disease-specific assessment instrument for individuals with IT-IEM is currently under development by our research group. In this process, patients and parents are involved as "content experts" (Matza et al 2004). Focus group interviews are the method of choice to identify topics, concerns and resources relevant in everyday life (Matza et al 2013).…”

Section: Introductionmentioning

confidence: 99%

Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents

et al. 2016

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Introduction: Progress in diagnosis and treatment of patients with intoxication-type inborn errors of metabolism (IT-IEM) such as urea cycle disorders, organic acidurias or maple syrup urine disease is resulting in a growing number of long-term survivors. Consequently, health-related quality of life (HrQoL) of patients is increasingly regarded as a meaningful outcome parameter. To develop the first validated, disease-specific HrQoL questionnaire for IT-IEM, patients and parents were interviewed as content experts to identify major physical and psychosocial constraints and resources.Methods: Focus group interviews with 19 paediatric IT-IEM patients and 26 parents were conducted in four metabolic centres in Austria, Germany and Switzerland. Disease-specific HrQoL categories were established by qualitative content analysis.Results: Fourteen disease-specific topics related to the three well-established generic HrQoL dimensions of physi-

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Assessment of Health-Related Quality of Life in Children: A Review of Conceptual, Methodological, and Regulatory Issues

Cited by 584 publications

References 68 publications

Quality of life in children with OCD before and after treatment

Quality of life in children with OCD before and after treatment

Health-related quality of life among children with mental disorders: a systematic review

Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents

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