Health-related quality of life in children with epilepsy: Development and validation of self-report and parent proxy measures

被引:163
|
作者
Ronen, GM
Streiner, DL
Rosenbaum, P
机构
[1] McMaster Univ, Dept Pediat, Hamilton, ON L8S 4J9, Canada
[2] Univ Toronto, Dept Psychiat, Kunin Lunenfield Appl Res Unit, Toronto, ON, Canada
关键词
health-related quality of life; children; epilepsy; self-report measure; parents; proxy;
D O I
10.1046/j.1528-1157.2003.46302.x
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Purpose: To answer a need to include and measure accurately the impact and burden of epilepsy as outcomes of interventions with affected children, we developed and validated self-report and parent-proxy respondent health-related quality of life (HRQL) instruments for preadolescent children with epilepsy. Methods: We combined qualitative and quantitative research methods. Items were extracted from focus group discussions involving children with epilepsy and their parents. We created scales formatted with alternative paired options of forced responses and used factor analysis to generate relevant subscales and reduce the number of items. We checked internal consistency, assessed test-retest reliability 10-14 days apart, and documented construct validity. Results: A sample of 381 children with epilepsy, age 6-15 years, and their parents independently completed a 67-item questionnaire, from which we chose five items for each subscale. The measures share four subscales, but each measure has an additional distinct subscale. The children and parents could discern differences and report differentially between the various aspects of the HRQL. Internal consistency measured with Cronbach's a was acceptable for all subscales; construct validity has been demonstrated from the testing of several hypotheses. Test-retest reliability examined with the intraclass correlation coefficient was satisfactory for the parents and for children age 8 years and older. The correlations between the mothers' and children's responses was poor to moderate. Conclusions: The data demonstrate sound psychometric properties for both related measures, which are easy to administer for children with epilepsy who are 8 years and older and their parents. The subscales encompass HRQL dimensions judged most important by children with epilepsy for the self-report measure and by parents for the proxy response measure. The parent-proxy measure should be useful as a complement to the child self-report measure in evaluating the validity of parental assessment of the child's health status; in longitudinal outcome research; and in HRQL assessment of children who are unable to respond independently.
引用
收藏
页码:598 / 612
页数:15
相关论文
共 50 条
  • [21] Health-related quality of life measures for children and adolescents with epilepsy: A response to comments
    Solans, Maite
    Pane, Sabrina
    Estrada, Maria-Dolors
    Serra-Sutton, Vicky
    Berra, Silvina
    Herdman, Michael
    Alons, Jordi
    Rajmil, Luis
    VALUE IN HEALTH, 2008, 11 (04) : 789 - 789
  • [22] Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer
    Chang, PC
    Yeh, CH
    PSYCHO-ONCOLOGY, 2005, 14 (02) : 125 - 134
  • [23] Validity of three measures of health-related quality of life in children with intractable epilepsy
    Sherman, EMS
    Slick, DJ
    Connolly, MB
    Steinbok, P
    Camfield, C
    Eyrl, KL
    Massey, C
    Farrell, K
    EPILEPSIA, 2002, 43 (10) : 1230 - 1238
  • [24] Adolescent self-report and parent proxy-report of health-related quality of life: an analysis of validity and reliability of PedsQL™ 4.0 among a sample of Malaysian adolescents and their parents
    Sanker Kaartina
    Yit Siew Chin
    Rezali Fara Wahida
    Fui Chee Woon
    Chu Chien Hiew
    Mohd Shariff Zalilah
    Mohd Taib Mohd Nasir
    Health and Quality of Life Outcomes, 13
  • [25] Adolescent self-report and parent proxy-report of health-related quality of life: an analysis of validity and reliability of PedsQL™ 4.0 among a sample of Malaysian adolescents and their parents
    Kaartina, Sanker
    Chin, Yit Siew
    Wahida, Rezali Fara
    Woon, Fui Chee
    Hiew, Chu Chien
    Zalilah, Mohd Shariff
    Nasir, Mohd Taib Mohd
    HEALTH AND QUALITY OF LIFE OUTCOMES, 2015, 13
  • [26] Parent-Proxy Health-Related Quality of Life: Assessment Considerations and Clinical Implications for Improving Health-Related Quality of Life
    Wiemann, Constance M.
    Zimmerman, Cortney T.
    JOURNAL OF ADOLESCENT HEALTH, 2023, 72 (01) : 1 - 2
  • [27] HONG KONG CHINESE VERSION OF PARENT PROXY HEALTH-RELATED QUALITY OF LIFE MEASURE FOR CHILDREN WITH EPILEPSY - TRANSLATION, CROSS-CULTURAL ADAPTATION AND VALIDATION OF THE MEASURE
    Yam, Winnie K. L.
    Chow, Susanna M. K.
    Ronen, Gabriel M.
    QUALITY OF LIFE RESEARCH, 2004, 13 (09) : 1501 - 1501
  • [28] Parent's report on oral health-related quality of life of children with haemophilia
    Yazicioglu, Iffet
    Deveci, Ceren
    Ciftci, Volkan
    Antmen, Buelent
    Dogan, Muharrem C.
    HAEMOPHILIA, 2019, 25 (02) : 229 - 235
  • [29] Comparison of self-report and parent proxy-report of function and quality of life for children with below-the-elbow deficiency
    Sheffler, L. C.
    Hanley, C.
    Bagley, A.
    Molitor, F.
    James, M. A.
    JOURNAL OF INVESTIGATIVE MEDICINE, 2008, 56 (01) : 157 - 158
  • [30] Measuring health-related quality of life in children: the development of the TACQOL parent form
    Vogels, T
    Verrips, GHW
    Verloove-Vanhorick, SP
    Fekkes, M
    Kamphuis, RP
    Koopman, HM
    Theunissen, NCM
    Wit, JM
    QUALITY OF LIFE RESEARCH, 1998, 7 (05) : 457 - 465