Literature DB >> 11207164

A review of measures of quality of life for children with chronic illness.

C Eiser1, R Morse.   

Abstract

AIMS: To identify currently available generic and disease specific measures of quality of life (QoL) for work with children; and make recommendations about the future development and application of QoL measures.
METHODS: Systematic searches were conducted to identify measures of QoL. Primary research papers were coded by the authors on the basis of predefined inclusion and exclusion criteria.
RESULTS: Of the 137 papers included in the review, 43 involved the development of a new measure. These included 19 generic and 24 disease specific measures. Almost half the measures were developed in the USA. Measures were identified which were appropriate for children across a broad age range, and included provision for completion by different respondents (child only, parent only, or both). There were no clear distinctions between measures of QoL, health, or functional status.
CONCLUSIONS: We have identified a small number of measures which fulfil basic requirements and could be used to assess QoL in clinical trials or following interventions. However, there remain a number of problems in measuring QoL in children. These include limited availability of disease specific measures; discrepancies between child and parent ratings; limited availability of measures for self completion by children; lack of precision regarding the content of domains of QoL; and the cultural appropriateness of measures developed elsewhere for children in the UK.

Entities:  

Mesh:

Year:  2001        PMID: 11207164      PMCID: PMC1718699          DOI: 10.1136/adc.84.3.205

Source DB:  PubMed          Journal:  Arch Dis Child        ISSN: 0003-9888            Impact factor:   3.791


  47 in total

1.  The Miami pediatric quality of life questionnaire: parent scale.

Authors:  F D Armstrong; S R Toledano; K Miloslavich; L Lackman-Zeman; J D Levy; C L Gay; W B Schuman; P E Fishkin
Journal:  Int J Cancer Suppl       Date:  1999

Review 2.  Quality of life research in oncology. Past achievements and future priorities.

Authors:  N K Aaronson; B E Meyerowitz; M Bard; J R Bloom; F I Fawzy; M Feldstein; D Fink; J C Holland; J E Johnson; J T Lowman
Journal:  Cancer       Date:  1991-02-01       Impact factor: 6.860

Review 3.  Measurement of health status in the 1990s.

Authors:  D L Patrick; M Bergner
Journal:  Annu Rev Public Health       Date:  1990       Impact factor: 21.981

4.  Development of the Quality of Life in Epilepsy Inventory for Adolescents: the QOLIE-AD-48.

Authors:  J A Cramer; L E Westbrook; O Devinsky; K Perrine; M B Glassman; C Camfield
Journal:  Epilepsia       Date:  1999-08       Impact factor: 5.864

5.  Functional status II(R). A measure of child health status.

Authors:  R E Stein; D J Jessop
Journal:  Med Care       Date:  1990-11       Impact factor: 2.983

6.  Health-related quality-of-life measures for children.

Authors:  C Eiser; I Cotter; P Oades; D Seamark; R Smith
Journal:  Int J Cancer Suppl       Date:  1999

7.  The PedsQL: measurement model for the pediatric quality of life inventory.

Authors:  J W Varni; M Seid; C A Rode
Journal:  Med Care       Date:  1999-02       Impact factor: 2.983

8.  Measuring health-related quality of life in children: the development of the TACQOL parent form.

Authors:  T Vogels; G H Verrips; S P Verloove-Vanhorick; M Fekkes; R P Kamphuis; H M Koopman; N C Theunissen; J M Wit
Journal:  Qual Life Res       Date:  1998-07       Impact factor: 4.147

9.  Toward the development of a play performance scale for children (PPSC).

Authors:  L L Lansky; M A List; S B Lansky; M E Cohen; L F Sinks
Journal:  Cancer       Date:  1985-10-01       Impact factor: 6.860

10.  A modified quality-of-life measure for youths: psychometric properties.

Authors:  G M Ingersoll; D G Marrero
Journal:  Diabetes Educ       Date:  1991 Mar-Apr       Impact factor: 2.140

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  152 in total

1.  Short report: Is regional paediatric surveillance useful? Experience in Wales.

Authors:  J R Sibert; R J Morgan; H I O'Connell; R Lynn; Z E Guildea; S R Palmer
Journal:  Arch Dis Child       Date:  2001-06       Impact factor: 3.791

2.  Quality of life following surgery for congenital glaucoma: findings of the LVPEI congenital glaucoma registry.

Authors:  Vijaya K Gothwal; Bharani Seelam; Anil K Mandal
Journal:  Eye (Lond)       Date:  2018-12-05       Impact factor: 3.775

Review 3.  The adolescent with a chronic condition. Part II: healthcare provision.

Authors:  P-A Michaud; J-C Suris; R Viner
Journal:  Arch Dis Child       Date:  2004-10       Impact factor: 3.791

Review 4.  Monitoring health related quality of life in adolescents with diabetes: a review of measures.

Authors:  M de Wit; H A Delemarre-van de Waal; F Pouwer; R J B J Gemke; F J Snoek
Journal:  Arch Dis Child       Date:  2007-05       Impact factor: 3.791

Review 5.  No pain, no gain? Integrating QoL assessment in paediatrics.

Authors:  Christine Eiser
Journal:  Arch Dis Child       Date:  2007-05       Impact factor: 3.791

6.  Building a self-measuring healthcare system with computable metrics, data fusion, and substitutable apps.

Authors:  Kenneth D Mandl; Joshua C Mandel
Journal:  BMJ Outcomes       Date:  2015-04

7.  Health-related quality of life in young adults in education, employment, or training: development of the Japanese version of Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales Young Adult Version.

Authors:  Mei Kaneko; Iori Sato; Takafumi Soejima; Kiyoko Kamibeppu
Journal:  Qual Life Res       Date:  2014-02-14       Impact factor: 4.147

8.  Children's and parents' perspectives of health-related quality of life in newly diagnosed adolescent idiopathic scoliosis.

Authors:  Nick Kontodimopoulos; Konstantia Damianou; Eleni Stamatopoulou; Anastasios Kalampokis; Ioannis Loukos
Journal:  J Orthop       Date:  2018-02-19

9.  Reliability and validity of the Japanese version of the KIDSCREEN-52 health-related quality of life questionnaire for children/adolescents and parents/proxies.

Authors:  Satoko Nezu; Hidemi Iwasaka; Keigo Saeki; Rika Ishizuka; Hideyo Goma; Nozomi Okamoto; Hiroko Makino; Masami Tanimura; Kazumi Yoshizaki; Kenji Obayashi; Norio Kurumatani
Journal:  Environ Health Prev Med       Date:  2014-12-09       Impact factor: 3.674

10.  Validity and reliability of Pediatric Quality of Life Inventory for 2- to 4-year-old and 5- to 7-year-old Turkish children.

Authors:  Ozden Sukran Uneri; Belma Agaoglu; Aysen Coskun; Nursu C Memik
Journal:  Qual Life Res       Date:  2008-01-18       Impact factor: 4.147

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