Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Aug 13;9(1):100.
doi: 10.1186/s41687-025-00928-8.

Psychometric evaluation of the EQ-5D-Y-3L in Ethiopian pediatric inpatients: comparing self and proxy reports

Begashaw Melaku Gebresillassie  1   2 , Yared Belete Belay  3 , Adeladlew Kassie Netere  4   5 , Ning Yan Gu  6
Affiliations

Psychometric evaluation of the EQ-5D-Y-3L in Ethiopian pediatric inpatients: comparing self and proxy reports

Begashaw Melaku Gebresillassie et al. J Patient Rep Outcomes. .

Abstract

Background: Limited evidence exists regarding the measurement properties of the EQ-5D-Y-3L across different modes of administration. This study aimed to examine changes in parent/caregiver-child/adolescent dyad agreement concerning health-related quality of life (HRQoL) over time, assess variations in health status according to socio-demographic factors, and evaluate the responsiveness of the EQ-5D-Y-3L within a pediatric population in Ethiopia.

Methods: The study was conducted at the University of Gondar Comprehensive Specialized Hospital, involving children/adolescents aged 4-18 years admitted to the pediatric inpatient unit. Children/adolescents completed the EQ-5D-Y-3L self-complete version at admission and discharge, while parents/caregivers completed the proxy version. Health status was analyzed utilizing the EQ-5D-Y-3L descriptive profiles, utility values, and the EuroQol Visual Analogue Scale (EQ VAS) scores, categorized by age, gender, and residence. Agreement between parent/caregiver and child/adolescent reports was evaluated using weighted Cohen's kappa for dimension levels and the intraclass correlation coefficient (ICC) for utility and EQ VAS scores. Responsiveness was assessed through paired t-tests and the Paretian Classification of Health Change (PCHC) analysis, which classifies health status changes as improved, worsened, mixed, or unchanged based on changes across EQ-5D dimensions.

Results: A total of 957 children/adolescents, with a mean age of 10.7 ± 4.3 years, along with their parents/caregivers, participated in the study. The predominant diagnoses included pneumonia, meningitis, malaria, malnutrition, and glomerulonephritis. Both child/adolescent and parent/caregiver reports indicated poorer health status among older adolescents (13-18 years), boys from rural areas. Agreement on the EQ-5D-Y-3L dimension levels was fair to moderate at admission (weighted kappa ranging from 0.28 to 0.38) and was poorer at discharge for the 'worried, sad or unhappy' dimension (weighted kappa of 0.15). Agreement on utility and EQ VAS scores was acceptable at both admission and discharge (ICC: 0.498-0.676), with moderate to good agreement observed among children/adolescents aged 7-16 years. However, agreement on utility scores decreased at discharge for older boys (13-18 years old) and urban residents, while it increased for the younger age group (4-6 years old). Responsiveness analysis demonstrated significant improvements in the dimensions of 'Looking After Myself,' 'Mobility,' and 'Worried, Sad or Unhappy,' with most children/adolescents exhibiting health improvements according to PCHC criteria.

Conclusion: Parent/caregiver-child/adolescent dyad agreement concerning HRQoL was low to moderate and varied according to socio-demographic factors. The EQ-5D-Y-3L instrument demonstrated responsiveness to changes in health status, supporting its utility in pediatric populations. These findings underscore the importance of employing age-appropriate and context-sensitive HRQoL assessment tools in pediatric care and health policy. Incorporating both child/adolescent and parent/caregiver perspectives can inform clinical decisions and resource allocation, especially in low-resource settings. Further research is warranted to explore factors influencing these variations and to enhance understanding of their underlying causes.

Keywords: EQ-5D-Y-3L; Ethiopia; Parent/caregiver-child/adolescent agreement; Responsiveness.

PubMed Disclaimer

Conflict of interest statement

Declarations. Ethics approval and consent to participate: We obtained ethical approval from the University of Gondar’s Institutional Review Board with the reference number: VP/RTT/05/750/22, ensuring compliance with ethical standards in research involving human participants. To fully inform participants about the study, we provided a summary detailing the study’s purpose, along with informed consent forms for parents/caregivers and assent forms for children/adolescents. These documents were designed to be clear and comprehensive, ensuring that all participants and their guardians provided informed and voluntary consent before participation. The process of obtaining informed consent and assent was conducted in accordance with the ethical guidelines laid out by the Institutional Review Board, prioritizing participant understanding and voluntary participation. To ensure data privacy and security, all personal identifiers were removed from datasets before analysis. Hard copies of consent forms and clinical data were stored in locked cabinets accessible only to the core research team. Electronic data were password-protected and stored on encrypted devices. Data access was strictly limited to authorized personnel involved in the study. Furthermore, all data were anonymized during reporting to prevent identification of individual participants. Consent for publication: Not applicable. Competing interests: The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Distribution of admission diagnoses among children and adolescents (N = 957). DKA: Diabetic ketoacidosis
Fig. 2
Fig. 2
Distribution of health problems across EQ-5D-Y-3L dimensions at admission and discharge, comparing (A) child/adolescent self-reports and (B) parent/caregiver reports. Bars represent the percentage of participants selecting each level: “No problems,” “Some problems,” and “A lot of problems”
Fig. 3
Fig. 3
Change in the percentage of reported problems between admission and discharge by respondent type (child/adolescent vs. parent/caregiver)
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. World Health Organization (2018) Millennium Development Goals (MDGs). Available from: https://www.who.int/en/news-room/fact-sheets/detail/millennium-developme...
    1. Eiser C, Morse R (2001) A review of measures of quality of life for children with chronic illness. Arch Dis Child 84(3):205–211 - PMC - PubMed
    1. Janssens A, Coon JT, Rogers M, Allen K, Green C, Jenkinson C et al (2015) A systematic review of generic multidimensional patient-reported outcome measures for children, part I: descriptive characteristics. Value Health 18(2):315–333 - PubMed
    1. Janssens A, Rogers M, Gumm R, Jenkinson C, Tennant A, Logan S et al (2016) Measurement properties of multidimensional patient-reported outcome measures in neurodisability: a systematic review of evaluation studies. Dev Med Child Neurol 58(5):437–451 - PMC - PubMed
    1. Whoqol Group (1995) The world health organization quality of life assessment (WHOQOL): position paper from the world health organization. Soc Sci Med 41(10):1403–1409 - PubMed

LinkOut - more resources