Restoring Well-Being: How Cancer-Directed Treatment Alters the Quality-of-Life Trajectory for Kaposi Sarcoma Patients in Malawi

Abstract

Health-related quality of life (HRQoL) is an important patient-centered outcome in oncology. Kaposi sarcoma, a common cancer throughout much of Africa, carries a significant physical and psychological burden, yet longitudinal HRQoL data using patient-reported outcomes are scarce. We assessed changes in HRQoL before, during, and after treatment and examined clinical and demographic predictors. We conducted a prospective, observational cohort study of patients with Kaposi sarcoma treated with paclitaxel at Lighthouse HIV Center of Excellence in Lilongwe, Malawi. Participants completed the Chichewa-translated PROMIS-29+2 survey via an audio-computer-assisted self-interview at four time points: before treatment, mid-treatment, immediately post-treatment, and six months post-treatment. Longitudinal changes in HRQoL domains were analyzed using linear mixed-effects models with participant-specific random intercepts, adjusting for age, sex, CD4 count, laboratory markers, and Karnofsky Performance Status, with statistical significance defined at the 95% CI. Of 72 enrolled participants, 60 were included in the analysis. The median age was 43 years, 77% were male, and all-cause mortality was 25% over 12 months of follow-up. At baseline, participants who died during follow-up had poorer physical function and social roles and higher fatigue and pain severity. Across all timepoints, mixed-effects models showed improvements in anxiety, depression, fatigue, sleep disturbance, pain interference, pain severity, physical function, and social roles; cognitive function remained unchanged. The largest adjusted mean changes were in pain interference (β = −10.73), fatigue (β = −10.36), and physical function (β = 10.09), where β represents the adjusted mean difference in score on a 0–100 scale. In adjusted models, higher Karnofsky Performance Status was consistently associated with better physical function and lower fatigue across all timepoints, and pain interference was driven primarily by pain severity. HRQoL among patients with KS improved over the course of treatment across most PROMIS domains, with the physical function, fatigue, and pain-related domains showing the greatest gains, underscoring the clinical benefit of paclitaxel treatment in this patient population, who often present in an extremely debilitated state. Limitations include a small sample size and selection bias, as those who do not respond well to treatment are excluded at later time points.