Quality of life in pre-adolescence: A 17-dimensional health-related measure (17D)

Apajasalo, M; Rautonen, Jukka; Holmberg, Christer; Sinkkonen, Janne; Aalberg, Veikko; Pihko, Helena; Siimes, Martti A.; Kaitila, Ilkka; Mäkelä, Annikki; Erkkilä, Krista; Sintonen, Harri

doi:10.1007/bf00439227

Cited by 132 publications

(129 citation statements)

References 38 publications

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“…Two PBMs were not included for further analyses, as no evidence was found in an English-speaking population: 16 Dimensional (16D) 198 /17 Dimensional (17D), 199 and Assessment of Quality of Life Mark 2 -6D Adolescents (AQoL-6D). 200 Characteristics of these excluded PROMs can be found in Appendix 7.…”

Section: Preference-based Measuresmentioning

confidence: 99%

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Morris

Janssens

Allard

et al. 2014

Health Services and Delivery Research

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BackgroundThe identification of suitable outcome measures will improve the evaluation of integrated NHS care for the large number of children affected by neurodisability, and has the potential to encourage the provision of more appropriate and effective health care. This research sought to appraise the potential of patient-reported outcome measures (PROMs) for children and young people with neurodisability.AimThis research aimed (i) to identify key outcomes of health care for children with neurodisability, beyond morbidity and mortality, from the perspectives of children, parents and professionals; (ii) to critically appraise existing generic multidimensional PROMs; and (iii) to examine whether or not the key outcomes might be measured by existing PROMs. We also sought agreement on a definition of neurodisability.MethodsData were gathered in three main ways, (i) a systematic review identified eligible generic multidimensional PROMs and peer-reviewed studies evaluating psychometric performance using English-language questionnaires. Studies were appraised for methodological quality and psychometric performance was appraised using standard criteria. (ii) Focus groups and interviews with children and young people with neurodisability, and separately with parents, sought to identify important outcomes of NHS care, and their feedback on example PROM questionnaires. (iii) An online Delphi survey was conducted with a multidisciplinary sample of health professionals to seek agreement on appropriate NHS outcomes. In addition, we convened a consensus meeting with a small nominal group of young people, parents and professionals; the group sought agreement on a core set of important health outcomes.ResultsFrom the systematic review, we identified 126 papers that reported eligible evidence regarding the psychometric performance of 25 PROMs. Evidence of psychometric robustness was more favourable for a small number of PROMs: KIDSCREEN (generic), DISABKIDS (chronic-generic) and Child Health Utility 9D (preference-based measure). The Pediatric Quality of Life Inventory and KINDL offer both self-report and a proxy report version for a range of age bands, but evidence of their psychometric performance was weaker. Evidence was lacking in one or more respects for all candidate PROMs, in both general populations and those with neurodisability. Proxy reporting was found generally to be poorly correlated with self-report. Focus groups and interviews included 54 children and young people, and 53 parents. The more important health outcomes were felt to be communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, parents of children with intellectual impairment identified behaviour, toileting and safety as important outcomes. Participants suggested problems with the face validity of example PROM questionnaires for measuring NHS care. In the Delphi survey, 276 clinicians from a wide range of professions contributed to at least one of four rounds. Professionals rated pain, hearing, seeing, sleep, toileting, mobility and communication as key goals for the NHS but also identified treating neurological symptoms as important. Professionals in the Delphi survey and parents working with the research team agreed a proposed definition for neurodisability. The consensus meeting confirmed overlap between the outcomes identified as important by young people, parents and professionals, but not complete agreement.ConclusionsThere was agreement between young people, parents and professionals regarding a core suite of more important health outcomes: communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, behaviour, toileting and safety were identified as important by parents. This research suggests that it would be appropriate to measure these constructs using PROMs to assess health care. None of the candidate PROMs in the review adequately captures all of the identified constructs, and there is inadequate evidence that candidate PROMs are psychometrically robust for use across children with neurodisability. Further consultation with young people, families and professionals is warranted to support the use of PROMs to measure NHS outcomes. Research to test potential PROMs with different age groups and conditions would be valuable.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Preference-based Measuresmentioning

confidence: 99%

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Morris

Janssens

Allard

et al. 2014

Health Services and Delivery Research

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show abstract

“…The 16-dimensional (16D) and the 17-dimensional health-related measure (17D) are two other recently published generic instruments [57,58]. The 16D (16 items) is designed for adolescents aged 12-15 yrs, the 17D (17 items) is suitable for children aged 8-11 yrs.…”

Section: Generic Measuresmentioning

confidence: 99%

Quality-of-life assessment in children and adolescents with asthma

Rutishauser¹,

Sawyer²,

Bowes³

1998

Eur Respir J

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Health-related quality of life has become an essential part of health outcome measurement in chronic disorders. However, it is only recently that health professionals have focused on quality-of-life assessment in children and adolescents. Several generic, as well as the asthma-specific quality-of-life instruments specifically designed for use in children and adolescents are reviewed in this article with particular regard to the conceptual and methodological features of the measures and their applicability in clinical studies. The recently published Child Health Questionnaire is a useful generic instrument to comprehensively assess quality of life, in particular when comparing young people with different chronic disorders. The Pediatric Asthma Quality-of-life Questionnaire has shown responsiveness to change over time, but it lacks age-specificity with regard to psychosocial issues and comprehensiveness of quality-of-life assessment. In contrast, the Childhood Asthma Questionnaire provides three different versions for different target ages. However, its generic part is not reflective of the respondent's health status. The other asthma-specific instruments have major conceptual deficiencies when used as a single measure for quality-of-life assessment. In the absence of a single ideal instrument, the use of batteries of quality-of-life instruments is therefore recommended and further research is required to identify the impact that age and developmental status have on quality-of-life assessment.

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“…The utility of a generic HRQOL tool for children or adolescents has not been explicitly tested in patients with neurodevelopmental disorders [25,26,39,[49][50][51][52][53]. There are very few paediatric neurosurgical clinical studies that use the HRQOL tools mentioned above to look into the clinical outcome of the patients [12][13][14][15]21,25,54].…”

Section: Hoqmentioning

confidence: 99%

Will electronic integrated text, visual and audio questionnaire be a better tool to evaluate the health status of paediatric hydrocephalus patients?

Tan¹,

Caird²,

Cooper³

2017

Ment Health Addict Res

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Quality of life in pre-adolescence: A 17-dimensional health-related measure (17D)

Cited by 132 publications

References 38 publications

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Quality-of-life assessment in children and adolescents with asthma

Will electronic integrated text, visual and audio questionnaire be a better tool to evaluate the health status of paediatric hydrocephalus patients?

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