Methodological considerations in the assessment of health‐related quality of life in children (original) (raw)
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Measuring health-related quality of life in a child population
Background: The 56-ttem TNO AZL Child Quality Of Ufe (TACQOL) questionnaire was developed to meet the need for a reliable and valid instrument for measuring health-related quality of life (HRQoL) in children. HRQoL was defined as health status in seven domains plus emotional responses to problems in health status. The TACQOL explicitly offers respondents the possibility of differentiating between their functioning and the way they feel about it. The aims of the study were threefold: to evaluate psychometric performance of the TACQOL in the general population, to evaluate the relationship between Parent Forms and Child Forms and to obtain additional information about validity. Methods: A random sample of 1,789 parents of 6-11 year olds completed the TACQOL (response rate 71%), as well as 1,159 8-11 year olds themselves (response rate 69%). Results: Multiple correspondence analyses showed that Kern response categories were ordinal and that the TACQOL scales may be regarded as metric. Cronbach's a ranged from 0.65 to 0.84. Only 57% of reported health status problems were associated with negative emotions. Intraclass correlation coefficients between Parents Forms and Child Forms ranged from 0.44 tot 0.61. Pearson's correlation coefficients between TACQOL and KINDL ranged from 0.24 to 0.60. Univariate analyses of variance showed that children with chronic diseases and children receiving medical treatment had lower TACQOL scores than healthy children. Conclusions: The study showed that with the TACQOL, children's HRQoL can be measured in a reliable and valid way.
https://www.ijhsr.org/IJHSR\_Vol.10\_Issue.11\_Nov2020/IJHSR\_Abstract.021.html, 2020
Purpose: Quality of life assessment in children is a useful indicator of overall health because it captures information on the physical and mental health status of the children. The need for such assessment in children is for identification of vulnerable groups with poor health and help them take necessary interventions to improve their situation and prevent more serious consequences Methods: 702 school going children aged from 8-12 years including both male and female students were assessed. After due permissions, the Pediatric Quality of life Inventory version 4.0 Scale(PedsQL)-child self-report was distributed amongst children in order to identify which category of pediatric quality of life is most affected among children. Detailed explanation about different components and questions of the scale and scoring was given to the children. The parents report was also distributed to analyse if there were any difference in child and parent's perspective regarding the health related quality of life of the child. Results: The data consisted of 43% females and 57% males. One way ANOVA demonstrated that there was significant difference (P<0.01) between the four components of the scale with the physical functioning aspect being most affected amongst children. Mann Whitney U test was done which demonstrated significant difference (p<0.01) between child and parent's perspective regarding health related quality of life of the child. Conclusion: The study demonstrates Physical functioning aspect is the most affected among children using pediatric quality of life inventory 4.0-child self-report. There is significant difference between child's perspective and parent's perspective of health-related quality of life of the child.
Health and Quality of Life Outcomes, 2013
Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. Purpose: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. Method: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. Results: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. Conclusions: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.
The measurement of quality of life in young children
Child: Care, Health and Development, 2000
The purpose of this paper is to argue for a measure of quality of life (QoL) for children aged between 4 and 8 years, describe the obstacles in developing such a measure, and provide evidence that it is possible to elicit directly information from children. Finally we summarize and critique measures that are currently available for this purpose.
Quality of life measurement in children and adolescents: Issues, instruments, and applications
Journal of Clinical Psychology, 2001
There is increasing interest in measuring quality of life (QL) in children and adolescents, but this interest has developed without careful attention given numerous important issues. Consequently, there is much diversity and confusion in this measurement area. We discuss at a conceptual level herein how to construe and define QL, approach its measurement, and the implications of for whom this is done. Methodological issues pertaining to validation, proxy report, and child development are also discussed. Guidelines for selecting QL measures are provided and a set of generic QL measures is recommended for further consideration. Finally, applications of the QL concept in the policy, service and care, and science areas are delineated.
Value in Health, 2008
Objective: To identify currently available generic and disease-specific health-related quality of life (HRQOL) instruments for children and adolescents up to 19 years old, to describe their content, and to review their psychometric properties. Study Design: Previous reviews on the subject and a new literature review from 2001 to December 2006 (MEDLINE, the ISI Science Citation Index, HealthSTAR and PsycLit) were used to identify measures of HRQOL for children and adolescents. The characteristics (country of origin, age range, type of respondent, number of dimensions and items, name of the dimensions and condition) and psychometric properties (reliability, validity, and sensitivity to change) of the instruments were assessed following international guidelines published by the Scientific Committee of the Medical Outcomes Trust. Results: In total, 30 generic and 64 disease-specific instruments were identified, 51 of which were published between 2001 and 2005. Many generic measures cover a core set of basic concepts related to physical, mental and social health, although the number and name of dimensions varies substantially. The lower age limit for self-reported instruments was 5-6 years old. Generic measures developed recently focused on both child self-report and parent-proxy report, although 26% of the disease-specific questionnaires were exclusively addressed to proxy-respondents. Most questionnaires had tested internal consistency (67%) and to a lesser extent test-retest stability (44.7%). Most questionnaires reported construct validity, but few instruments analyzed criterion validity (n = 5), structural validity (n = 15) or sensitivity to change (n = 14). Conclusions: The development of HRQOL instruments for children and adolescents has continued apace in recent years, particularly with regard to disease-specific questionnaires. Many of the instruments meet accepted standards for psychometric properties, although instrument developers should include children from the beginning of the development process and need to pay particular attention to testing sensitivity to change.
Health and Quality of Life Outcomes
Background The Pediatric Quality of Life Inventory Version 4.0 (PedsQLTM4.0) is a generic health-related quality of life (HRQoL) questionnaire, widely used in pediatric clinical trials but not yet validated in France. We performed the psychometric validation of the self and proxy PedsQLTM4.0 generic questionnaires for French children aged 8–12 years old. Methods This bicentric cross-sectional study included 123 children and their parents with congenital heart disease (CHD) and 97 controls. The psychometric validation method was based on the consensus-based standards for the selection of health measurement instruments (COSMIN). The reliability was tested using the intraclass correlation coefficient (ICC). To evaluate the validity of this scale, content, face, criterion, and construct validity psychometric proprieties were tested. Acceptability was studied regarding questionnaires’ completion and the existence of a floor or a ceiling effect. Results Test–retest reliability intra-class...
Arthritis Care & Research, 2011
Purpose. To measure health-related quality of life (HRQOL) in children and adolescents ages 5-18 years. This measure consists of child report (ages 10-18 years) and 2 versions of parent-proxy report (ages 5-18 years) of the child's HRQOL. It can be used with healthy children and those with both acute and chronic health conditions. Content. Assesses for 14 physical and psychosocial domains: general health perceptions, physical functioning, role/social physical functioning, bodily pain, role/social emotional functioning, role/social behavioral functioning, parent impact-time, parent impact-emotional, self-esteem, mental health, behavior, family activities, family cohesion, and change in health. Number of items. The child-report questionnaire (CHQ-CF87) consists of 87 items. The long parent-report questionnaire (CHQ-PF50) consists of 50 items, and the short parent-report questionnaire (CHQ-PF28) consists of 28 items. Response options/scale. The response options for the CHQ are ordinal scales that vary by the item. Each item consists of 4-6 response options. Additionally, each scale consists of varying numbers of items. Recall period for items. Varies by subscale. Most scales have a recall period of 4 weeks. The change in health subscale has a recall period of 1 year, and the global health, general health perception, and family cohesion subscales ask about the child's health "in general." Endorsements. No information. Examples of use. Apaz MT, Saad-Magalhaes C, Pistorio A, Ravelli A, de Oliveira Sato J, Marcantoni MB, et al, for the Paediatric Rheumatology International Trials Organisation. Health-related quality of life of patients with juvenile dermatomyositis: results from the Paediatric Rheumatology International Trials Organisation multinational quality of life cohort study.