Pediatric health-related quality of life questionnaires in clinical trials

Raat, Hein; Mohangoo, Ashna D.; Grootenhuis, Martha A.

doi:10.1097/01.all.0000225157.67897.c2

Cited by 92 publications

(101 citation statements)

References 31 publications

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“…17,18 Use of HRQoL as an outcome measure of health status can be useful in daily clinical practice, in effectiveness studies, and as an indicator of the quality of care received. 19,20 Furthermore, identification of individuals with poorer HRQoL enables early detection of health needs. In the pediatric age, at a time when chronic disease is less prevalent than later in life, systematic use of this measure in communitybased studies can enable recognition of neglected groups who may be disadvantaged from the perspective of health and social care.…”

Section: Discussionmentioning

confidence: 99%

Social Inequalities in Mental Health and Health-Related Quality of Life in Children in Spain

2012

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OBJECTIVES: To assess mental health and health-related quality of life (HRQoL) of children and adolescents in Spain and to investigate the existence of a social gradient in mental health and HRQoL. METHODS: Within the Spanish National Health Survey (2006), the parents’ version of the Strengths and Difficulties Questionnaire was administered to a population aged 4 to 15 years, and the parents’ version of the modified KIDSCREEN-10 Index was given to a population aged 8 to 15 years. Sociodemographic data and information on family structure, socioeconomic status, health status, and discrimination were collected. Regression models were developed to analyze associations of socioeconomic status with mental health and HRQoL. RESULTS: A total of 6414 children and adolescents aged 4 to 15 years participated. Mean Strengths and Difficulties Questionnaire score was 9.38 (SD, 5.84) and mean KIDSCREEN-10 Index score (n = 4446) was 85.21 (SD, 10.73). Children whose mothers had a primary school education (odds ratio [OR]: 1.37; 95% confidence interval [CI]: 1.29–1.46) or a secondary education (OR: 1.21; 95% CI: 1.14–1.29) presented poorer mental health than those whose mothers had a university degree. Children from disadvantaged social classes (IV–V) showed slightly poorer HRQoL scores (OR: 0.98; CI: 0.97–0.99) than the remaining children. CONCLUSIONS: There is a social gradient in the mental health of children and young adolescents in Spain. No social gradient was found for HRQoL, although children from families of disadvantaged social classes had slightly worse HRQoL scores than their counterparts from more advantaged classes.

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Section: Discussionmentioning

confidence: 99%

Social Inequalities in Mental Health and Health-Related Quality of Life in Children in Spain

2012

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“…Furthermore, the fear of relapse remains and makes parents vulnerable to stress and could be reflected in the lower rating of the domain "home functioning" by both parents and children, post-SCT. Given the strong relationship between maternal ratings of the child's functioning with ratings of her own functioning, ideally dyadic ratings of both parents and children should be used as much as possible to determine pediatric HRQoL in clinical settings [14,36].…”

Section: Discussionmentioning

confidence: 99%

Child and parental adaptation to pediatric stem cell transplantation

Vrijmoet-Wiersma

Kolk

Grootenhuis

et al. 2008

Support Care Cancer

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Goals of work Allogeneic pediatric stem cell transplantation (SCT) is a very intensive treatment with a high mortality and morbidity. The objectives of this study were to assess the (1) self-and proxy-reported health-related quality of life (HRQoL) compared to a norm group, (2) levels of parenting stress compared to a norm group, (3) differences in HRQoL and parenting stress pre-and post-SCT, and (4) effect of child age and parenting stress on selfand proxy-reported HRQoL pre-and post-SCT. Materials and methods Pre-and on average 10 months post-SCT, 21 children and adolescents and their parent(s) completed questionnaires on HRQoL and the mothers completed a measure of parenting stress. Main results Post-SCT, home functioning, physical functioning, and total HRQoL scores were lower than the norm group. We found stable HRQoL scores over time with the exception of the domain home functioning, which was rated lower post-SCT than pre-SCT. Parents reported lower HRQoL scores than the children pre-and post-SCT and younger children experienced better HRQoL than older children. Parenting stress was higher post-SCT than pre-SCT and high levels of parenting stress were predictive of poor parental ratings of child HRQoL post-SCT. Conclusions Ongoing psychosocial assessment post-SCT is necessary to target children with a lowered HRQoL and parents who experience elevated parenting stress who may be in greater need of more supportive care.

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“…8,58,59 Several generic tools have been described to specifically assess the impact of a disease on the family or caregiver, such as the Pediatric Quality of Life Inventory Family Impact survey, 52,53 the Parenting Stress Index Short Form ('PSI-SF') 63 and the Caregiver Impact Questionnaire ('CIQ'). 64 There were several incidences of patient-reported outcome measures being used inappropriately in the paediatric otolaryngology literature.…”

Section: Discussionmentioning

confidence: 99%

A systematic review of patient-reported outcome measures in paediatric otolaryngology

Powell

Robson

2017

J. Laryngol. Otol.

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Background:Recently, there has been increased emphasis on the development and application of patient-reported outcome measures. This drive to assess the impact of illness or interventions, from the patient's perspective, has resulted in a greater number of available questionnaires. The importance of selecting an appropriate patient-reported outcome measure is specifically emphasised in the paediatric population. The literature on patient-reported outcome measures used in paediatric otolaryngology was reviewed.Methods:A comprehensive literature search was conducted using the databases Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, and PsycInfo, using the terms: ‘health assessment questionnaire’, ‘structured questionnaire’, ‘questionnaire’, ‘patient reported outcome measures’, ‘PROM’, ‘quality of life’ or ‘survey’, and ‘children’ or ‘otolaryngology’. The search was limited to English-language articles published between 1996 and 2016.Results:The search yielded 656 articles, of which 63 were considered relevant. This included general paediatric patient-reported outcome measures applied to otolaryngology, and paediatric otolaryngology disease-specific patient-reported outcome measures.Conclusion:A large collection of patient-reported outcome measures are described in the paediatric otolaryngology literature. Greater standardisation of the patient-reported outcome measures used in paediatric otolaryngology would assist in pooling of data and increase the validation of tools used.

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Pediatric health-related quality of life questionnaires in clinical trials

Cited by 92 publications

References 31 publications

Social Inequalities in Mental Health and Health-Related Quality of Life in Children in Spain

Social Inequalities in Mental Health and Health-Related Quality of Life in Children in Spain

Child and parental adaptation to pediatric stem cell transplantation

A systematic review of patient-reported outcome measures in paediatric otolaryngology

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