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.

INTRODUCTION: Internationally 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. METHODS: The 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. RESULTS: Fifty-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. CONCLUSION: Translation 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.

"We have heard it together": a qualitative analysis of couple HIV testing and counselling recruitment in Malawi's Option B+ programme.

Encouraging HIV-infected pregnant women to recruit male partners for couple HIV testing and counselling (CHTC) is promoted by the World Health Organization, but remains challenging. Formal strategies for recruiting the male partners of pregnant women have not been explored within an Option B+ programme. Our objective was to learn about experiences surrounding CHTC recruitment within a formal CHTC recruitment study. A randomised controlled trial comparing two CHTC recruitment strategies was conducted among HIV-infected pregnant women presenting to Bwaila Antenatal Unit in 2014. Women were randomised to receive an invitation to attend the clinic as a couple or this invitation plus clinic-led phone and community tracing. A qualitative study was conducted with a subset of participants to learn about recruitment. This paper describes experiences of a subset of HIV-infected pregnant women (N = 20) and male partners (N = 17). One on one in-depth interviews were audio-recorded, transcribed, translated, and coded using content analysis. Nearly all women presented the invitation and disclosed their HIV-positive status to their partners on the day of HIV diagnosis, often to facilitate pill-taking. Men and women in both arms perceived the messages to be more compelling since they came from the clinic, rather than the woman herself. Couples who attended CHTC displayed greater care for one another and mutual support for HIV-related behaviours. Facilitating CHTC with invitations and tracing can support CHTC uptake and support for HIV-affected couples. In an Option B+ context, inviting partners for CHTC can facilitate male involvement and have important benefits for families.