Development of a measure of the health-related quality of life of children in public care
PedPal Lit
2005
Upton P; Maddocks A; Eiser C; Barnes PM; Williams J
Child: Care, Health And Development
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2214.2005.00520.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2005.00520.x</a>
Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales
BACKGROUND: In situations where children are unable or unwilling to respond for themselves, measurement of quality of life (QOL) is often obtained by parent proxy-report. However the relationship between child self and parent proxy-reports has been shown to be poor in some circumstances. Additionally the most appropriate statistical method for comparing ratings between child and parent proxy-reports has not been clearly established. The objectives of this study were to assess the: 1) agreement between child and parent proxy-reports on an established child QOL measure (the PedsQL) using two different statistical methods; 2) effect of chronological age and domain type on agreement between children's and parents' reports on the PedsQL; 3) relationship between parents' own well-being and their ratings of their child's QOL. METHODS: One hundred and forty-nine healthy children (5.5 - 6.5, 6.5 - 7.5, and 7.5 - 8.5 years) completed the PedsQL. One hundred and three of their parents completed these measures in relation to their child, and a measure of their own QOL (SF-36). RESULTS: Consistency between child and parent proxy-reports on the PedsQL was low, with Intra-Class correlation coefficients ranging from 0.02 to 0.23. Correlations were higher for the oldest age group for Total Score and Psychosocial Health domains, and for the Physical Health domain in the youngest age group. Statistically significant median differences were found between child and parent-reports on all subscales of the PedsQL. The largest median differences were found for the two older age groups. Statistically significant correlations were found between parents' own QOL and their proxy-reports of child QOL across the total sample and within the middle age group. CONCLUSION: Intra-Class correlation coefficients and median difference testing can provide different information on the relationship between parent proxy-reports and child self-reports. Our findings suggest that differences in the levels of parent-child agreement previously reported may be an artefact of the statistical method used. In addition, levels of agreement can be affected by child age, domains investigated, and parents' own QOL. Further studies are needed to establish the optimal predictors of levels of parent-child agreement.
2006
Cremeens J; Eiser C; Blades M
Health And Quality Of Life Outcomes
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1186/1477-7525-4-58" target="_blank" rel="noreferrer">10.1186/1477-7525-4-58</a>
Parental communication and children's behaviour following diagnosis of childhood leukaemia
Adaptation; PedPal Lit; Lymphocytic; Truth Disclosure; Acute/diagnosis/drug therapy/psychology Male Parent-Child Relations Research Support; mean age = 7.33 years) newly diagnosed with acute lymphoblastic leukaemia (ALL) were interviewed about (i) the child's reactions and behaviour following diagnosis; parents differ in their views about what to tell the child. In this study 55 parents of children (36 boys and 19 girls; parents' perceptions of childhood cancer affect the way they communicate with their child. These findings may be used to inform training packages in order to facilitate improved communicatio n amongst health professionals.; Psychological Affect Antineoplastic Agents/administration & dosage Child Child BehaviorCommunication Female Health Education Humans Interview; Psychological Leukemia
2005
Clarke SA; Davies H; Jenney M; Glaser A; Eiser C
Psycho-oncology
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pon.843" target="_blank" rel="noreferrer">10.1002/pon.843</a>
Quality-of-life measures in chronic diseases of childhood
Child; Female; Humans; Male; Great Britain; Health Services Research; Health Status Indicators; quality of life; adolescent; Preschool; Chronic disease; disabled children; Self Assessment (Psychology)
SCOPE OF THE REPORT: This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what extent are adult measures used in the evaluation of healthcare interventions in children? (2) How appropriate are adult measures for use with children? (3) To what extent do child self-reports correspond with assessments made by parents and carers? (4) How feasible and reliable are proxy measures of QoL in different disease contexts? OBJECTIVES: (1) To review the state of the art with regard to measurement of QoL for children. (2) To make recommendations regarding the value of currently available measures for different purposes. (3) To identify further research needs. METHOD: Electronic databases were searched for the period 1980-July 1999 for articles relating to measures of QoL, health status or well-being in children (under 18 years) with chronic disease. Handsearching of relevant journals and cross-referencing with reference lists in identified articles was also carried out. Key workers in the field were contacted for additional information, and the Internet was searched for relevant websites. RESULTS: Forty-three measures were identified (19 generic and 24 disease-specific). Sixteen measures allowed for completion by children and parent/caregiver; seven only allowed for completion by a proxy, and the remainder (n = 17) allowed only for child completion. The measures were described as QoL (n = 30), health status, (n = 2), perception of illness (n = 1), life satisfaction (n = 1) and quality of well-being (n = 1). RESULTS - TO WHAT EXTENT ARE ADULT MEASURES USED IN THE EVALUATION OF HEALTHCARE INTERVENTIONS IN CHILDREN?: Three studies were identified where adult measures were used with very few changes made for children. In 11 studies involving nine separate measures of QoL, adult measures were used as a model for work with children. RESULTS - HOW APPROPRIATE ARE ADULT MEASURES FOR USE WITH CHILDREN?: Adult measures may fail to tap the specific aspects of QoL that are important to the child. Measures based on adult work impose considerable response burden for children, in terms of length, reading skills and response scale. Wording and format of adult measures may need to be modified to account for children's cognitive and language skills. More basic research is needed to determine the level of response burden that children of different ages can manage. Assessments of difficulty (e.g. reading age) need to be routinely included with information about new measures. RESULTS - TO WHAT EXTENT DO CHILD SELF-REPORTS CORRESPOND WITH ASSESSMENTS MADE BY PARENTS AND CARERS?: Fourteen studies were identified in which concor-dance between child and parent was investigated, often as part of the development of a new measure. There was some evidence for greater concordance between child and parent for physical functioning compared with social and emotional domains, but greater heterogeneity in the latter measures may contribute to inconsistent results. There was no simple relationship between concordance and moderating variables such as age, gender and illness, but this conclusion was addressed only very rarely. RESULTS - HOW FEASIBLE AND RELIABLE ARE PROXY MEASURES OF QOL IN DIFFERENT DISEASE CONTEXTS?: Only five papers fulfilled the review criteria. Evaluation is difficult because authors fail to justify their choice of measures, and do not report critical information such as completion rates or missing data. Use of existing measures can potentially eliminate the time and expense required to develop a comprehensive measure of QoL, but a full battery of standardised tests may be expensive in terms of time for administration and scoring. In addition, battery measures tend to be lengthy and therefore demanding for sick patients. They are not recommended for work with children. RECOMMENDATIONS FOR RESEARCH - MINIMUM CRITERIA FOR NEW MEASURES: A set of procedures needs to be established for the development of new measures. These need to draw on the experience gained in development of child and adult measures to date. Basic research to enhance understanding of how children interpret questions in QoL measures is recommended. We need to understand the differences in meaning of items between children and adults, and between children of different ages. Some attempt to develop measures for children of 6 years or more have been reported, and these should be further developed. (ABSTRACT TRUNCATED)
2001
Eiser C; Morse R
Health Technology Assessment (winchester, England)
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.3310/hta5040" target="_blank" rel="noreferrer">10.3310/hta5040</a>
Siblings of a child with cancer
adolescent; Child; Female; Humans; Male; Neoplasms; Attitude to Health; Communication; empathy; Sibling Relations; Preschool; Adaptation; Psychological; sibling bereavement; Personality Assessment
A total of 21 healthy siblings were interviewed about their experiences when a brother or sister is diagnosed with cancer. Information about the illness, opinions about who should inform siblings, social support, specific worries and worst memories were studied, as well as perceptions of any differences in the way they were treated by their parents. A short General Impact Scale was developed to assess the extent to which the siblings felt their lives had been disrupted by the illness. Results on these measures were compared with scores on four dimensions of the Sibling Perception Questionnaire (Carpenter & Sahler 1991). Siblings who reported some positive effects as a consequence of the illness (they had become more empathic toward others, or valued life more) perceived their interpersonal relations to be more negatively affected, i.e. there were greater difficulties in their relationships with others especially their parents. Higher scores on communication were related to less of an impact of the illness on life generally. However, these siblings also reported heightened concerns that their brother or sister might die. The data suggested that siblings should have opportunities to talk about implications of the disease, especially worries about death, and more efforts should be made to prepare siblings for visits to hospital and seeing the sick child.
1994-10
Havermans T; Eiser C
Child: Care, Health And Development
1994
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2214.1994.tb00393.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.1994.tb00393.x</a>