Top

Health and Quality of Life Outcomes

Published in:

Open Access 01-12-2021 | Disturbance of the Social Behaviour | Review

A comparison of self-reported and proxy-reported health utilities in children: a systematic review and meta-analysis

Authors: Mingyu Jiang, Yue Ma, Minghui Li, Rui Meng, Aixia Ma, Pingyu Chen

Published in: Health and Quality of Life Outcomes | Issue 1/2021

Abstract

Objective

This study aimed to conduct a systematic review and meta-analysis to compare differences in health utilities (HUs) assessed by self and proxy respondents in children, as well as to evaluate the effects of health conditions, valuation methods, and proxy types on the differences.

Methods

Eligible studies published in PubMed, Embase, Web of Science, and Cochrane Library up to December 2019 were identified according to PRISMA guidelines. Meta-analyses were performed to calculate the weighted mean differences (WMDs) in HUs between proxy- versus self-reports. Mixed-effects meta-regressions were applied to explore differences in WMDs among each health condition, valuation method and proxy type.

Results

A total of 30 studies were finally included, comprising 211 pairs of HUs assessed by 15,294 children and 16,103 proxies. This study identified 34 health conditions, 10 valuation methods, and 3 proxy types. In general, proxy-reported HUs were significantly different from those assessed by children themselves, while the direction and magnitude of these differences were inconsistent regarding health conditions, valuation methods, and proxy types. Meta-regression demonstrated that WMDs were significantly different in patients with ear diseases relative to the general population; in those measured by EQ-5D, Health utility index 2 (HUI2), and Pediatric asthma health outcome measure relative to Visual analogue scale method; while were not significantly different in individuals adopting clinician-proxy and caregiver-proxy relative to parent-proxy.

Conclusion

Divergence existed in HUs between self and proxy-reports. Our findings highlight the importance of selecting appropriate self and/or proxy-reported HUs in health-related quality of life measurement and economic evaluations.

Available only for authorised users

Drummond MF SM, Claxton K, et al. Methods forthe Economic Evaluation of Health Care Programmes, 4th ed2015.

Excellence NIfHaC. Guide to the methods of technology appraisal 2013. 2013.

PBAC. Guidelines for preparing submissions to the Pharmaceutical Benefits Advisory Committee (Version 4.5) (2015).

CADTH. Guidelines for the economic evaluation of health technologies: Canada 4th Edition (2017).

Streiner DL, Norman GR, Cairney J. Health measurement scales: a practical guide to their development and use (5th edition). Aust N Z J Public Health. 2016;40(3):294–5. https://doi.org/10.1111/1753-6405.12484.CrossRef

Chen G, Ratcliffe J. A review of the development and application of generic multi-attribute utility instruments for paediatric populations. Pharmacoeconomics. 2015;33(10):1013–28.CrossRef

Barr RD, Chalmers D, De Pauw S, et al. Health-related quality of life in survivors of Wilms’ tumor and advanced neuroblastoma: a cross-sectional study. J Clin Oncol. 2000;18(18):3280–7.CrossRef

Barr R, Gonzalez A, Longchong M, et al. Health status and health-related quality of life in survivors of cancer in childhood in Latin America: a MISPHO feasibility study. Int J Oncol. 2001. https://doi.org/10.3892/ijo.19.2.413.CrossRefPubMed

Baumann N, Bartmann P, Wolke D. Health-related quality of life into adulthood after very preterm birth. Pediatrics. 2016;137(4):e20153148. https://doi.org/10.1542/peds.2015-3148.

10.

Ungar DWJ. Challenges in health state valuation in paediatric economic evaluation. Pharmacoeconomics. 2011;29(8):641–52.CrossRef

11.

Kwon J, Kim SW, Ungar WJ, et al. Patterns, trends and methodological associations in the measurement and valuation of childhood health utilities. Qual Life Res. 2019;28(7):1705–24.CrossRef

12.

Fluchel M, Horsman JR, Furlong W, Castillo L, Alfonz Y, Barr RD. Self and proxy-reported health status and health-related quality of life in survivors of childhood cancer in Uruguay. Pediatr Blood Cancer. 2008;50(4):838–43. https://doi.org/10.1002/pbc.21299.CrossRefPubMed

13.

Perez-Sousa MA, Olivares PR, Gusi N. Parent-child discrepancy in the assessment of health- related quality of life using the EQ-5D-Y questionnaire. Archivos Argentinos de Pediatria. 2017;115(5 1):541–6.PubMed

14.

Bull KS, Kennedy CR, Bailey S, Ellison DW, Clifford SC. Improved health-related quality of life outcomes associated with SHH subgroup medulloblastoma in SIOP-UKCCSG PNET3 trial survivors. Acta Neuropathol. 2014;128(1):151–3. https://doi.org/10.1007/s00401-014-1300-4.CrossRefPubMedPubMedCentral

15.

Khadka J, Kwon J, Petrou S, Lancsar E, Ratcliffe J. Mind the (inter-rater) gap. An investigation of self-reported versus proxy-reported assessments in the derivation of childhood utility values for economic evaluation: A systematic review. Soc Sci Med. 2019;240:112543. https://doi.org/10.1016/j.socscimed.2019.112543.

16.

Kwon J, Kim SW, Ungar WJ, Tsiplova K, Madan J, Petrou S. A systematic review and meta-analysis of childhood health utilities. Med Decis Making. 2018;38(3):277–305. https://doi.org/10.1177/0272989X17732990.CrossRefPubMed

17.

Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009;6(7):e1000097.CrossRef

18.

Wells G, Shea B, O'Connell D et al. The Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomised studies in meta-analyses http://www.ohri.ca/programs/clinical_epidemiology/oxford.asp. Accessed 18 Dec 2018.

19.

Herzog R, Alvarez-Pasquin MJ, Diaz C, et al. Are healthcare workers’ intentions to vaccinate related to their knowledge, beliefs and attitudes? A systematic review. BMC Public Health. 2013;13:154.CrossRef

20.

Higgins JPT, Thomas J, Chandler J, Cumpston M, Li T, Page MJ, Welch VA, editors. Cochrane handbook for systematic reviews of interventions. 2nd ed. Chichester: Wiley; 2019.

21.

Higgins JP, Thompson SG, Deeks JJ, Altman DG. Measuring inconsistency in meta-analyses. BMJ. 2003;327(7414):557–60.CrossRef

22.

Higgins JPT, Green S (editors). Cochrane handbook for systematic reviews of interventions version 5.1.0 [The Cochrane Collaboration, 2011. www.cochrane-handbook.org. Accessed 1 January].

23.

Chandler J, Hopewell S. Cochrane methods—twenty years experience in developing systematic review methods. Syst Rev. 2013;2:76. https://doi.org/10.1186/2046-4053-2-76.CrossRefPubMedPubMedCentral

24.

Czyzewski DI, Mariotto MJ, Bartholomew LK, LeCompte SH, Sockrider MM. Measurement of quality of well being in a child and adolescent cystic fibrosis population. Med Care. 1994;32(9):965–72. https://doi.org/10.1097/00005650-199409000-00007.CrossRefPubMed

25.

Glaser AW, Furlong W, Walker DA, et al. Applicability of the health utilities index to a population of childhood survivors of central nervous system tumours in the U.K. Eur J Cancer. 1999;35(2):1–261.CrossRef

26.

Saigal S, Stoskopf BL, Feeny D, et al. Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA. 1999;281(21):1991–7. https://doi.org/10.1001/jama.281.21.1991.CrossRefPubMed

27.

Verrips GH, Stuifbergen MC, den Ouden AL, et al. Measuring health status using the Health Utilities Index: agreement between raters and between modalities of administration. J Clin Epidemiol. 2001;54(5):475–81. https://doi.org/10.1016/s0895-4356(00)00317-6.CrossRefPubMed

28.

Brunner HI, Maker D, Grundland B, et al. Preference-based measurement of health-related quality of life (HRQL) in children with chronic musculoskeletal disorders (MSKDs). Med Decis Mak. 2003;23(4):314–22.CrossRef

29.

Brunner HI, Klein-Gitelman MS, Miller MJ, et al. Health of children with chronic arthritis: relationship of different measures and the quality of parent proxy reporting. Arthritis Rheum. 2004;51(5):763–73. https://doi.org/10.1002/art.20689.CrossRefPubMed

30.

Sung L, Young NL, Greenberg ML, et al. Health-related quality of life (HRQL) scores reported from parents and their children with chronic illness differed depending on utility elicitation method. J Clin Epidemiol. 2004;57(11):1–1166.CrossRef

31.

Cardarelli C, Cereda C, Masiero L, et al. Evaluation of health status and health-related quality of life in a cohort of Italian children following treatment for a primary brain tumor. Pediatr Blood Cancer. 2006;46(5):637–44. https://doi.org/10.1002/pbc.20480.CrossRefPubMed

32.

Fu L, Talsma D, Baez F, et al. Measurement of health-related quality of life in survivors of cancer in childhood in Central America: feasibility, reliability, and validity. J Pediatr Hematol Oncol. 2006;28(6):331–41.CrossRef

33.

Hanberger L, Ludvigsson J, Nordfeldt S. Health-related quality of life in intensively treated young patients with type 1 diabetes. Pediatr Diabetes. 2009;10(6):374–81. https://doi.org/10.1111/j.1399-5448.2008.00496.x.CrossRefPubMed

34.

Jelsma J, Ramma L. How do children at special schools and their parents perceive their HRQoL compared to children at open schools? Health Qual Life Outcomes. 2010;8:72. https://doi.org/10.1186/1477-7525-8-72.CrossRefPubMedPubMedCentral

35.

Penn A, Lowis SP, Stevens MC, et al. A detailed prospective longitudinal assessment of health status in children with brain tumors in the first year after diagnosis. J Pediatr Hematol Oncol. 2011;33(8):592–9. https://doi.org/10.1097/MPH.0b013e31821388c0.CrossRefPubMed

36.

Lee JM, Rhee K, O’grady MJ, et al. Health utilities for children and adults with type 1 diabetes. Med Care. 2011;49(10):924–31. https://doi.org/10.1097/MLR.0b013e318216592c.CrossRefPubMedPubMedCentral

37.

Belfort MB, Zupancic JA, Riera KM, Turner JH, Prosser LA. Health state preferences associated with weight status in children and adolescents. BMC Pediatr. 2011;11:12. https://doi.org/10.1186/1471-2431-11-12.CrossRefPubMedPubMedCentral

38.

Trent M, Lehmann HP, Qian Q, Thompson CB, Ellen JM, Frick KD. Adolescent and parental utilities for the health states associated with pelvic inflammatory disease. Sex Transm Infect. 2011;87(7):583–7. https://doi.org/10.1136/sextrans-2011-050187.CrossRefPubMed

39.

Gerald JK, McClure LA, Harrington KF, Moore T, Hernández-Martínez AC, Gerald LB. Measurement characteristics of the pediatric asthma health outcome measure. J Asthma. 2012;49(3):260–6. https://doi.org/10.3109/02770903.2012.656863.CrossRefPubMed

40.

Rhodes ET, Goran MI, Lieu TA, et al. Health-related quality of life in adolescents with or at risk for type 2 diabetes mellitus. J Pediatr. 2012;160(6):911–7. https://doi.org/10.1016/j.jpeds.2011.11.026.CrossRefPubMedPubMedCentral

41.

Wolke D, Chernova J, Eryigit-Madzwamuse S, Samara M, Zwierzynska K, Petrou S. Self and parent perspectives on health-related quality of life of adolescents born very preterm. J Pediatr. 2013;163(4):1020-6.e2. https://doi.org/10.1016/j.jpeds.2013.04.030.CrossRefPubMed

42.

Kulpeng W, Sornsrivichai V, Chongsuvivatwong V, et al. Variation of health-related quality of life assessed by caregivers and patients affected by severe childhood infections. BMC Pediatr. 2013;13:122. https://doi.org/10.1186/1471-2431-13-122.CrossRefPubMedPubMedCentral

43.

Robertson W, Fleming J, Kamal A, et al. Randomised controlled trial and economic evaluation of the “Families for Health” programme to reduce obesity in children. Arch Dis Child. 2017;102(5):416–26. https://doi.org/10.1136/archdischild-2016-311514.CrossRefPubMed

44.

Vermeulen KM, Jansen DEMC, Buskens E, Knorth EJ, Reijneveld SA. Serious child and adolescent behaviour disorders; a valuation study by professionals, youth and parents. BMC Psychiatry. 2017;17(1):208. https://doi.org/10.1186/s12888-017-1363-6.CrossRefPubMedPubMedCentral

45.

Sims-Williams HJ, Sims-Williams HP, Mbabazi Kabachelor E, Warf BC. Quality of life among children with spina bifida in Uganda. Arch Dis Child. 2017;102(11):1057–61. https://doi.org/10.1136/archdischild-2016-312307.CrossRefPubMed

46.

Bray N, Noyes J, Harris N, Edwards RT. Measuring the health-related quality of life of children with impaired mobility: examining correlation and agreement between children and parent proxies. BMC Res Notes. 2017;10(1):377. https://doi.org/10.1186/s13104-017-2683-9.CrossRefPubMedPubMedCentral

47.

Creswell C, Violato M, Fairbanks H, et al. Clinical outcomes and cost-effectiveness of brief guided parent-delivered cognitive behavioural therapy and solution-focused brief therapy for treatment of childhood anxiety disorders: a randomised controlled trial. Lancet Psychiatry. 2017;4(7):529–39. https://doi.org/10.1016/S2215-0366(17)30149-9.CrossRefPubMedPubMedCentral

48.

Shiroiwa T, Fukuda T, Shimozuma K. Psychometric properties of the Japanese version of the EQ-5D-Y by self-report and proxy-report: reliability and construct validity. Qual Life Res. 2019;28(11):3093–105. https://doi.org/10.1007/s11136-019-02238-1.CrossRefPubMedPubMedCentral

49.

Perez-Sousa MA, Olivares PR, Garcia-Hermoso A, Gusi N. Does anthropometric and fitness parameters mediate the effect of exercise on the HRQoL of overweight and obese children/adolescents? Qual Life Res. 2018;27(9):2305–12. https://doi.org/10.1007/s11136-018-1893-5.CrossRefPubMed

50.

de Medeiros CB, Moxon-Emre I, Scantlebury N, et al. Medulloblastoma has a global impact on health related quality of life: findings from an international cohort. Cancer Med. 2020;9(2):447–59. https://doi.org/10.1002/cam4.2701.CrossRefPubMed

51.

Kirkham FJ, Vigevano F, Raspall-Chaure M, et al. Health-related quality of life and the burden of prolonged seizures in noninstitutionalized children with epilepsy. Epilepsy Behav. 2020;102:106340. https://doi.org/10.1016/j.yebeh.2019.04.058.CrossRefPubMed

52.

López-Bastida J, López-Siguero JP, Oliva-Moreno J, et al. Health-related quality of life in type 1 diabetes mellitus pediatric patients and their caregivers in Spain: an observational cross-sectional study. Curr Med Res Opin. 2019;35(9):1589–95. https://doi.org/10.1080/03007995.2019.1605158.CrossRefPubMed

53.

Jardine J, Glinianaia SV, Mcconachie H, et al. Self-reported quality of life of young children with conditions from early infancy: a systematic review. Pediatrics. 2014;134(4):e1129–48.CrossRef

54.

Pickard AS. A structured review of studies on health-related quality of life and economic evaluation in pediatric acute lymphoblastic leukemia. J Natl Cancer Inst Monogr. 2004;2004(33):102–25.CrossRef

55.

Van Litsenburg RRL, Kunst A, Huisman J, et al. Health status utilities in pediatrics: a systematic review of acute lymphoblastic leukemia. Med Decis Mak. 2014;34(1):21–32.CrossRef

56.

McLernon DJ, Dillon JF, Donnan PT. Health-state utilities in liver disease: a systematic review and meta-analysis. Value Health. 2006;9(6):A245–6.CrossRef

57.

Peasgood T, Ward SE, Brazier J. Health-state utility values in breast cancer. Expert Rev Pharmacoecon Outcomes Res. 2010;10(5):553–66. https://doi.org/10.1586/erp.10.65.CrossRefPubMed

58.

Wyld M, Morton RL, Hayen A, Howard K, Webster AC. A systematic review and meta-analysis of utility-based quality of life in chronic kidney disease treatments. PLoS Med. 2012;9(9):e1001307. https://doi.org/10.1371/journal.pmed.1001307.CrossRefPubMedPubMedCentral

59.

Mark F, Horsman JR, et al. Self and proxy-reported health status and health-related quality of life in survivors of childhood cancer in Uruguay. Pediatr Blood Cancer. 2008;50(4):838–43.CrossRef

Title: A comparison of self-reported and proxy-reported health utilities in children: a systematic review and meta-analysis
Authors: Mingyu Jiang
Yue Ma
Minghui Li
Rui Meng
Aixia Ma
Pingyu Chen
Publication date: 01-12-2021
Publisher: BioMed Central
Keyword: Disturbance of the Social Behaviour
Published in: Health and Quality of Life Outcomes / Issue 1/2021
Electronic ISSN: 1477-7525
DOI: https://doi.org/10.1186/s12955-021-01677-0

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

A comparison of self-reported and proxy-reported health utilities in children: a systematic review and meta-analysis

Abstract

Objective

Methods

Results

Conclusion

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Objective

Methods

Results

Conclusion

Please log in to get access to this content

Other articles of this Issue 1/2021

Evaluating quality of life in families with Williams Syndrome patients

Valuing child and adolescent health: a qualitative study on different perspectives and priorities taken by the adult general public

Health-related quality of life in men with localized prostate cancer treated with radiotherapy: validation of an abbreviated version of the Expanded Prostate Cancer Index Composite for Clinical Practice in Spain

Translation and validation of the Traditional Chinese version of the COmprehensive Score for financial Toxicity-Functional Assessment of Chronic Illness Therapy (Version 2)

Predictors of long-term HRQOL following cardiac surgery: a 5-year follow-up study

Health-related quality of life and self-reported cognitive function in patients with delayed neurocognitive recovery after radical prostatectomy: a prospective follow-up study