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- Title
Patient-Proxy and Societal Perspectives of Quality-of-Life Utilities in Children With Cleft Lip and Palate Managed With Surgical Repair vs No Repair in Ethiopia.
- Authors
Chung, Karen Y.; Gebretekle, Gebremedhin B.; Howard, Andrew; Pullenayegum, Eleanor; Eshete, Mekonen; Forrest, Christopher R.; Sander, Beate
- Abstract
This cross-sectional study examines patient-proxy and societal perspectives of quality-of-life utilities for untreated and surgically treated children with cleft lip and palate. Key Points: Question: What are the perspectives of patient proxies and community members about quality-of-life utilities for children with cleft lip and/or palate (CL/P) who receive surgery or do not receive surgery, and are they associated with sociodemographic factors? Findings: This cross-sectional study of 312 patient proxies and 135 societal participants showed that CL/P disease severity and the effect of surgical repair in Ethiopia were undervalued by previous estimates from high-income countries. Surgical treatment, income, religion, and sex had a significant association with utility-based health-related quality of life. Meaning: These findings suggest that utilities for CL/P from low-resource settings are necessary, and continuing with the status quo risks further marginalization in health care resource allocation. Importance: In Ethiopia, more than 70% of infants with cleft lip and/or palate (CL/P) lack access to surgery. Infants who are untreated can experience severe malnutrition and extreme social stigma resulting in abandonment. Utilities are standardized measures of health-related quality of life (HRQOL) that inform health care resource allocation. However, CL/P utilities are missing from low- and middle-income countries (LMICs). Objective: To elicit utilities for untreated and surgically treated children with CL/P with consideration for social determinants of health from patient-proxy and societal participants. Design, Setting, and Participants: This cross-sectional study used patient proxies and societal participants in Addis Ababa, Ethiopia, from July 1, 2019, to January 30, 2020. Eligible patient proxies were caregivers of children younger than 18 years with nonsyndromic CL/P who were untreated or received surgery. Proxies were necessary as most patients were 0 to 4 years old and cannot reliably self-report. Eligible societal participants were 18 years and older with no family history of CL/P. Exposures: Surgical treatment and social determinants of health. Main Outcomes and Measures: Participants measured utilities using the visual analog scale (VAS), time trade-off (TTO), and standard gamble (SG). Results: In this study, 312 patient proxies and 135 societal participants were recruited. Mean (SD) utilities for untreated CL/P ranged from 0.57 (0.23) to 0.70 (0.22) from patient proxies and from 0.35 (0.21) to 0.8 (0.23) from societal participants, depending on utility instrument and cleft type. Surgical treatment was associated with a better HRQOL from the patient-proxy perspective (VAS, 0.17; 95% CI, 0.09 to 0.26; TTO, 0.15; 95% CI, 0.05 to 0.25) from the societal perspective (VAS, 0.21; 95% CI, 0.16 to 0.26; TTO, 0.17; 95% CI, 0.13 to 0.22; SG, 0.11; 95% CI, 0.06 to 0.15). Social determinants of health that were associated with patient-proxy utilities were income above the national mean (VAS, 0.10; 95% CI, 0.02 to 0.17; TTO, 0.11; 95% CI, 0.02 to 0.20), and religion (Christian vs other: TTO, −0.10; 95% CI, −0.17 to −0.03). From the societal perspective, the association between treatment and utilities was smaller in females compared with males (TTO, −0.05; 95% CI, −0.10 to −0.01). Conclusions and Relevance: The findings of this study suggest that CL/P disease severity and surgical impact in Ethiopia were undervalued by previous estimates from high-income countries and were associated with social determinants of health. Utility studies from participants from LMICs are feasible and necessary for representing HRQOL in LMICs and addressing health inequalities.
- Subjects
ETHIOPIA; CAREGIVER attitudes; SOCIAL determinants of health; CONFIDENCE intervals; MIDDLE-income countries; CROSS-sectional method; CLEFT palate; CLEFT lip; INCOME; SEVERITY of illness index; QUALITY of life; LOW-income countries; ODDS ratio; HEALTH equity; PROXY; HEALTH care rationing
- Publication
JAMA Network Open, 2022, Vol 5, Issue 7, pe2220900
- ISSN
2574-3805
- Publication type
Article
- DOI
10.1001/jamanetworkopen.2022.20900