• Pediatric blood & cancer · Nov 2018

    Translation, psychometric validation, and baseline results of the Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric measures to assess health-related quality of life of patients with pediatric lymphoma in Malawi.

    • Katherine Westmoreland, Bryce B Reeve, Amy Amuquandoh, Toon van der Gronde, Olivia Manthalu, Helena Correia, Christopher Stanley, Salama Itimu, Ande Salima, Mary Chikasema, Paula Ward, Atupele Mpasa, Stella Wachepa, Idah Mtete, Mercy Butia, Mary Chasela, Mary Mtunda, Peter Wasswa, Steven Martin, Nader El-Mallawany Kim, Peter Kazembe, and Satish Gopal.
    • Cancer Program, UNC Project-Malawi, Lilongwe, Malawi.
    • Pediatr Blood Cancer. 2018 Nov 1; 65 (11): e27353.

    IntroductionInternationally validated tools to measure patient-reported health-related quality of life (HRQoL) are available, but efforts to translate and culturally validate such tools in sub-Saharan Africa (SSA) are scarce, particularly among children.MethodsThe Patient-Reported Outcomes Measurement Information System 25-item pediatric short form (PROMIS-25) assesses six HRQoL domains-mobility, anxiety, depression, fatigue, peer relationships, and pain interference-by asking four questions per domain. There is a single-item pain intensity item. The PROMIS-25 was translated into Chichewa and validated for use in Malawi using mixed qualitative and quantitative methods. The validity and reliability of the PROMIS-25 was assessed.ResultsFifty-four pediatric patients with lymphoma completed the PROMIS-25. Structural validity was supported by interitem correlations and principal component analysis. Reliability of each scale was satisfactory (range alpha = 0.71-0.93). Known group validity testing showed that anemic children had worse fatigue (P = 0.016) and children with poor performance status had worse mobility (P < 0.001) and pain interference (P = 0.005). Compared to children with cancer in the United States, children from Malawi reported lower levels of mobility, higher anxiety, higher depressive symptoms, higher fatigue, better satisfaction with peer relationships, and higher pain interference.ConclusionTranslation and cultural validation of the PROMIS-25 into Chichewa for Malawi was successful. Baseline HRQoL for patients with pediatric lymphoma in Malawi is poor for all domains except peer relationships. This emphasizes an urgent need to address HRQoL among children undergoing cancer treatment in SSA using self-reported instruments validated within the local context.© 2018 Wiley Periodicals, Inc.

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