Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: A European perspective

Petersen, Corinna; Schmidt, Silke; Power, Michael; Bullinger, Monika

doi:10.1007/s11136-004-2575-z

Cited by 101 publications

(84 citation statements)

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“…Only three studies used a differential approach, whereby individuals who could communicate completed the measures independently, whereas those who could not were assessed by a proxy. 10 32,33 and the Caregiver Questionnaire (CQ). 50 One qualitative study described the development of a disease-specific measure of QOL for children with CP.…”

Section: Resultsmentioning

confidence: 99%

“…39 Five of these eight studies included individuals who were able to communicate and discuss their personal experiences, but excluded those who could not. 8,32,33,37,40 In 12 studies, limitations in communication were addressed by having all parents and caregivers complete the measure as a proxy-report, even when the person with CP was able to self-report. Only three studies used a differential approach, whereby individuals who could communicate completed the measures independently, whereas those who could not were assessed by a proxy.…”

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confidence: 99%

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Quality of life among adolescents with cerebral palsy: what does the literature tell us?

Livingston

Rosenbaum²,

Russell

et al. 2007

Develop Med Child Neuro

152

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This review describes trends in quality of life (QOL) and health-related quality of life (HRQOL) among adolescents with cerebral palsy (CP). Twenty original articles were identified by a structured search of multiple databases and grouped by design. Categories included descriptive crosssectional studies (n=8), measurement validation studies (n=9), and exploratory qualitative studies (n=3). Several trends were apparent. First, individuals with CP are reported to have decreased QOL and HRQOL compared with a normative population in some but not all areas of well-being. Second, functional status measures such as the Gross Motor Function Classification System are reliable indicators of variations in physical function, but do not correlate consistently with psychosocial well-being. Third, although adolescents with CP have different life issues than adults or children, limited research on factors associated with QOL and HRQOL has been described for this age range. We recommend that clinicians and researchers interested in assessing well-being among adolescents with CP include participants from across the spectrum of motor impairment, allow adolescents to self-report whenever possible, and assess adolescents independently, rather than including them with individuals from other age groups or clinical populations.Cerebral palsy (CP) is a clinical description of a chronic functional disability. The definition has recently been revised as '… a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.' 1 This definition follows concepts introduced by the World Health Organization's International Classification of Functioning, Disability and Health. 2 Changes in our conception of CP reflect an expansion beyond the functional limitations associated with motor impairment towards a recognition of the personal experience of individuals in this population. Under the broad notion of 'well-being', researchers have begun to consider functional status, health status, quality of life (QOL), and health-related quality of life (HRQOL). 'Functional status' can be conceptualized as 'the degree to which an individual is able to perform socially allocated roles free of physical or mental limitations ', 3 and focuses on the performance of specific tasks, such as 'activities of daily living'. 4 'Health status' considers broader medical and functional well-being, and is sometimes reported in terms of 'impact of disability'. 5 Assessments of QOL and HRQOL shift the description of well-being into the realm of the subjective, because these outcomes are not directly observable by a third party and cannot be measured along a physical dimension. 6 Although the areas of health considered in measurements of...

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Section: Resultsmentioning

confidence: 99%

mentioning

confidence: 99%

Quality of life among adolescents with cerebral palsy: what does the literature tell us?

Livingston

Rosenbaum²,

Russell

et al. 2007

Develop Med Child Neuro

152

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“…The DISABKIDS-37 was developed using literature searches, expert consultation and focus groups with 360 children and adolescents with different chronic health conditions and their families. 196 Child and parent focus groups were conducted to develop the DISABKIDS-Smileys-6.…”

Section: Disabkidsmentioning

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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“…The process consisted of several steps, from interviews with disaster survivors to item development, design of a pilot questionnaire, plus psychometric and content analysis. Pilot testing was performed according to the approach taken by other international research projects and was considered to be a beneficial way of testing psychometric characteristics and usability in order to enhance the questionnaire (Petersen, Schmidt, Power, & Bullinger, 2005;Winkler, Matschinger, & Angermayer, 2006). It was found that, overall, the pilot study produced a satisfactory instrument for assessing the constructs peritraumatic emotions, peritraumatic cognitions including perceived threat, coping strategies and control beliefs, as well as personal risk.…”

Section: Discussionmentioning

confidence: 99%

Human responses to disasters: A pilot study on peritraumatic emotional and cognitive processing

Grimm¹,

Hulse²,

Schmidt³

2012

PsycEXTRA Dataset

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This research article presents the qualitative development and cross-cultural pilot testing of a new instrument measuring emotional and cognitive processing during disasters. The instrument was developed according to a theoretical framework based on narratives from survivors of different types of disaster across Europe.Peritraumatic emotions and cognitions were assessed at three different stages of a disaster. The pilot study consisted of 311 participants responding to the questionnaire using scenario versions of disasters as well as 25 survivors working through the questionnaire using their experiences of real disasters. Both types of analysis were performed across seven countries. Differences in emotions and cognitions during the course of a disaster were displayed. Also, gender, the type of scenario participants were allocated to, and professional experience of emergencies led to differences in item response. As there was little difference between survivors" and scenario participants" responses, the use of a scenario in order to test pilot forms of questionnaires for purposive samples with certain characteristics such as limited sizes or access can be supported. For future research, the instrument should be field tested. It is envisaged it will be beneficial for a cross-cultural understanding of the influence of peritraumatic emotions and cognitions not only on posttraumatic

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Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: A European perspective

Cited by 101 publications

References 11 publications

Quality of life among adolescents with cerebral palsy: what does the literature tell us?

Quality of life among adolescents with cerebral palsy: what does the literature tell us?

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

Human responses to disasters: A pilot study on peritraumatic emotional and cognitive processing

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