• We are sorry, but NCBI web applications do not support your browser and may not function properly. More information
Logo of archdischArchives of Disease in ChildhoodInstructions for authorsCurrent TOC
Arch Dis Child. Mar 2001; 84(3): 205–211.
PMCID: PMC1718699

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

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.

Full Text

The Full Text of this article is available as a PDF (130K).

Selected References

These references are in PubMed. This may not be the complete list of references from this article.
  • Patrick DL, Bergner M. Measurement of health status in the 1990s. Annu Rev Public Health. 1990;11:165–183. [PubMed]
  • Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med. 1993 Apr 15;118(8):622–629. [PubMed]
  • Aaronson NK, Meyerowitz BE, Bard M, Bloom JR, Fawzy FI, Feldstein M, Fink D, Holland JC, Johnson JE, Lowman JT, et al. Quality of life research in oncology. Past achievements and future priorities. Cancer. 1991 Feb 1;67(3 Suppl):839–843. [PubMed]
  • Testa MA, Simonson DC. Assesment of quality-of-life outcomes. N Engl J Med. 1996 Mar 28;334(13):835–840. [PubMed]
  • Eiser C, Jenney ME. Measuring symptomatic benefit and quality of life in paediatric oncology. Br J Cancer. 1996 Jun;73(11):1313–1316. [PMC free article] [PubMed]
  • Starfield B, Riley AW, Green BF, Ensminger ME, Ryan SA, Kelleher K, Kim-Harris S, Johnston D, Vogel K. The adolescent child health and illness profile. A population-based measure of health. Med Care. 1995 May;33(5):553–566. [PubMed]
  • Wasson JH, Kairys SW, Nelson EC, Kalishman N, Baribeau P. A short survey for assessing health and social problems of adolescents. Dartmouth Primary Care Cooperative Information Project (The COOP). J Fam Pract. 1994 May;38(5):489–494. [PubMed]
  • Eiser C, Cotter I, Oades P, Seamark D, Smith R. Health-related quality-of-life measures for children. Int J Cancer Suppl. 1999;12:87–90. [PubMed]
  • Stein RE, Jessop DJ. Functional status II(R). A measure of child health status. Med Care. 1990 Nov;28(11):1041–1055. [PubMed]
  • Ravens-Sieberer U, Bullinger M. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res. 1998 Jul;7(5):399–407. [PubMed]
  • Lindström B, Eriksson B. Quality of life among children in the Nordic countries. Qual Life Res. 1993 Feb;2(1):23–32. [PubMed]
  • Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999 Feb;37(2):126–139. [PubMed]
  • Eiser C, Havermans T, Craft A, Kernahan J. Development of a measure to assess the perceived illness experience after treatment for cancer. Arch Dis Child. 1995 Apr;72(4):302–307. [PMC free article] [PubMed]
  • Raphael D, Rukholm E, Brown I, Hill-Bailey P, Donato E. The Quality of Life Profile--Adolescent Version: background, description, and initial validation. J Adolesc Health. 1996 Nov;19(5):366–375. [PubMed]
  • Iorio R, Pensati P, Botta S, Moschella S, Impagliazzo N, Vajro P, Vegnente A. Side effects of alpha-interferon therapy and impact on health-related quality of life in children with chronic viral hepatitis. Pediatr Infect Dis J. 1997 Oct;16(10):984–990. [PubMed]
  • Theunissen NC, Vogels TG, Koopman HM, Verrips GH, Zwinderman KA, Verloove-Vanhorick SP, Wit JM. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res. 1998 Jul;7(5):387–397. [PubMed]
  • Vogels T, Verrips GH, Verloove-Vanhorick SP, Fekkes M, Kamphuis RP, Koopman HM, Theunissen NC, Wit JM. Measuring health-related quality of life in children: the development of the TACQOL parent form. Qual Life Res. 1998 Jul;7(5):457–465. [PubMed]
  • Spencer NJ, Coe C. The development and validation of a measure of parent-reported child health and morbidity: the Warwick Child Health and Morbidity Profile. Child Care Health Dev. 1996 Nov;22(6):367–379. [PubMed]
  • Boyle MH, Furlong W, Feeny D, Torrance GW, Hatcher J. Reliability of the Health Utilities Index--Mark III used in the 1991 cycle 6 Canadian General Social Survey Health Questionnaire. Qual Life Res. 1995 Jun;4(3):249–257. [PubMed]
  • Apajasalo M, Rautonen J, Holmberg C, Sinkkonen J, Aalberg V, Pihko H, Siimes MA, Kaitila I, Mäkelä A, Erkkilä K, et al. Quality of life in pre-adolescence: a 17-dimensional health-related measure (17D). Qual Life Res. 1996 Dec;5(6):532–538. [PubMed]
  • Apajasalo M, Sintonen H, Holmberg C, Sinkkonen J, Aalberg V, Pihko H, Siimes MA, Kaitila I, Mäkelä A, Rantakari K, et al. Quality of life in early adolescence: a sixteen-dimensional health-related measure (16D). Qual Life Res. 1996 Apr;5(2):205–211. [PubMed]
  • Bradlyn AS, Harris CV, Warner JE, Ritchey AK, Zaboy K. An investigation of the validity of the quality of Well-Being Scale with pediatric oncology patients. Health Psychol. 1993 May;12(3):246–250. [PubMed]
  • Mishoe SC, Baker RR, Poole S, Harrell LM, Arant CB, Rupp NT. Development of an instrument to assess stress levels and quality of life in children with asthma. J Asthma. 1998;35(7):553–563. [PubMed]
  • Gibson PG, Henry RL, Vimpani GV, Halliday J. Asthma knowledge, attitudes, and quality of life in adolescents. Arch Dis Child. 1995 Oct;73(4):321–326. [PMC free article] [PubMed]
  • Christie MJ, French D, Sowden A, West A. Development of child-centered disease-specific questionnaires for living with asthma. Psychosom Med. 1993 Nov-Dec;55(6):541–548. [PubMed]
  • Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsend M. Measuring quality of life in children with asthma. Qual Life Res. 1996 Feb;5(1):35–46. [PubMed]
  • Phipps S, Hinds PS, Channell S, Bell GL. Measurement of behavioral, affective, and somatic responses to pediatric bone marrow transplantation: development of the BASES scale. J Pediatr Oncol Nurs. 1994 Jul;11(3):109–119. [PubMed]
  • Armstrong FD, Toledano SR, Miloslavich K, Lackman-Zeman L, Levy JD, Gay CL, Schuman WB, Fishkin PE. The Miami pediatric quality of life questionnaire: parent scale. Int J Cancer Suppl. 1999;12:11–17. [PubMed]
  • Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM. The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. J Behav Med. 1998 Apr;21(2):179–204. [PubMed]
  • Lansky LL, List MA, Lansky SB, Cohen ME, Sinks LF. Toward the development of a play performance scale for children (PPSC). Cancer. 1985 Oct 1;56(7 Suppl):1837–1840. [PubMed]
  • Lansky SB, List MA, Lansky LL, Ritter-Sterr C, Miller DR. The measurement of performance in childhood cancer patients. Cancer. 1987 Oct 1;60(7):1651–1656. [PubMed]
  • Hoare P, Russell M. The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure. Dev Med Child Neurol. 1995 Aug;37(8):689–696. [PubMed]
  • Keene DL, Higgins MJ, Ventureyra EC. Outcome and life prospects after surgical management of medically intractable epilepsy in patients under 18 years of age. Childs Nerv Syst. 1997 Oct;13(10):530–535. [PubMed]
  • Wildrick D, Parker-Fisher S, Morales A. Quality of life in children with well-controlled epilepsy. J Neurosci Nurs. 1996 Jun;28(3):192–198. [PubMed]
  • Cramer JA, Westbrook LE, Devinsky O, Perrine K, Glassman MB, Camfield C. Development of the Quality of Life in Epilepsy Inventory for Adolescents: the QOLIE-AD-48. Epilepsia. 1999 Aug;40(8):1114–1121. [PubMed]
  • Lewis-Jones MS, Finlay AY. The Children's Dermatology Life Quality Index (CDLQI): initial validation and practical use. Br J Dermatol. 1995 Jun;132(6):942–949. [PubMed]
  • Ingersoll GM, Marrero DG. A modified quality-of-life measure for youths: psychometric properties. Diabetes Educ. 1991 Mar-Apr;17(2):114–118. [PubMed]
  • Duffy CM, Arsenault L, Duffy KN, Paquin JD, Strawczynski H. The Juvenile Arthritis Quality of Life Questionnaire--development of a new responsive index for juvenile rheumatoid arthritis and juvenile spondyloarthritides. J Rheumatol. 1997 Apr;24(4):738–746. [PubMed]
  • Reid DT, Renwick RM. Preliminary validation of a new instrument to measure life satisfaction in adolescents with neuromuscular disorders. Int J Rehabil Res. 1994 Jun;17(2):184–188. [PubMed]
  • Juniper EF, Howland WC, Roberts NB, Thompson AK, King DR. Measuring quality of life in children with rhinoconjunctivitis. J Allergy Clin Immunol. 1998 Feb;101(2 Pt 1):163–170. [PubMed]
  • Rabbett H, Elbadri A, Thwaites R, Northover H, Dady I, Firth D, Hillier VF, Miller V, Thomas AG. Quality of life in children with Crohn's disease. J Pediatr Gastroenterol Nutr. 1996 Dec;23(5):528–533. [PubMed]
  • Langeveld JH, Koot HM, Passchier J. Headache intensity and quality of life in adolescents. How are changes in headache intensity in adolescents related to changes in experienced quality of life? Headache. 1997 Jan;37(1):37–42. [PubMed]
  • Rosenfeld RM, Goldsmith AJ, Tetlus L, Balzano A. Quality of life for children with otitis media. Arch Otolaryngol Head Neck Surg. 1997 Oct;123(10):1049–1054. [PubMed]
  • Pilpel D, Leiberman E, Zadik Z, Carel CA. Effect of growth hormone treatment on quality of life of short-stature children. Horm Res. 1995;44(1):1–5. [PubMed]
  • Parkin PC, Kirpalani HM, Rosenbaum PL, Fehlings DL, Van Nie A, Willan AR, King D. Development of a health-related quality of life instrument for use in children with spina bifida. Qual Life Res. 1997 Mar;6(2):123–132. [PubMed]
  • Climent JM, Reig A, Sánchez J, Roda C. Construction and validation of a specific quality of life instrument for adolescents with spine deformities. Spine (Phila Pa 1976) 1995 Sep 15;20(18):2006–2011. [PubMed]
  • Bullinger M, Anderson R, Cella D, Aaronson N. Developing and evaluating cross-cultural instruments from minimum requirements to optimal models. Qual Life Res. 1993 Dec;2(6):451–459. [PubMed]

Articles from Archives of Disease in Childhood are provided here courtesy of BMJ Group

Formats:

Related citations in PubMed

See reviews...See all...

Cited by other articles in PMC

See all...

Links

  • MedGen
    MedGen
    Related information in MedGen
  • PubMed
    PubMed
    PubMed citations for these articles

Recent Activity

Your browsing activity is empty.

Activity recording is turned off.

Turn recording back on

See more...