Pediatric lymphoma patients in Malawi present with poor health-related quality of life at diagnosis and improve throughout treatment and follow-up across all Pediatric PROMIS-25 domains.
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2021-10
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Background
Patient-reportedoutcomes (PROs) that assess health-related quality of life (HRQoL) are increasingly important components of cancer care and research that are infrequently used in sub-Saharan Africa (SSA).Methods
We administered the Chichewa Pediatric Patient-Reported Outcome Measurement Information System Pediatric (PROMIS)-25 at diagnosis, active treatment, and follow-up among pediatric lymphoma patients in Lilongwe, Malawi. Mean scores were calculated for the six PROMIS-25 HRQoL domains (Mobility, Anxiety, Depressive Symptoms, Fatigue, Peer Relationships, Pain Interference). Differences in HRQoL throughout treatment were compared using the minimally important difference (MID) and an ANOVA analysis. Kaplan-Meier survival estimates and Cox hazard ratios for mortality are reported.Results
Seventy-five children completed PROMIS-25 surveys at diagnosis, 35 (47%) during active treatment, and 24 (32%) at follow-up. The majority of patients died (n = 37, 49%) or were lost to follow-up (n = 6, 8%). Most (n = 51, 68%) were male, median age was 10 (interquartile range [IQR] 8-12), 48/73 (66%) presented with advanced stage III/IV, 61 (81%) were diagnosed with Burkitt lymphoma and 14 (19%) Hodgkin lymphoma. At diagnosis, HRQoL was poor across all domains, except for Peer Relationships. Improvements in HRQoL during active treatment and follow-up exceeded the MID. On exploratory analysis, fair-poor PROMIS Mobility <40 and severe Pain Intensity = 10 at diagnosis were associated with increased mortality risk and worse survival, but were not statistically significant.Conclusions
Pediatric lymphoma patients in Malawi present with poor HRQoL that improves throughout treatment and survivorship. Baseline PROMIS scores may provide important prognostic information. PROs offer an opportunity to include patient voices and prioritize holistic patient-centered care in low-resource settings.Type
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Ellis, Grace K, Hutton Chapman, Agness Manda, Ande Salima, Salama Itimu, Grace Banda, Ryan Seguin, Geoffrey Manda, et al. (2021). Pediatric lymphoma patients in Malawi present with poor health-related quality of life at diagnosis and improve throughout treatment and follow-up across all Pediatric PROMIS-25 domains. Pediatric blood & cancer, 68(10). p. e29257. 10.1002/pbc.29257 Retrieved from https://hdl.handle.net/10161/33045.
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Hutton Chapman
I am a pediatric hematologist/oncologist who is passionate about improving the lives of children with cancer and blood disorders, regardless of where they live. During my fellowship training, I took time to complete a Master's in Global Health through the Duke Graduate School, and gained significant experience working abroad in Tanzania. As a member of faculty, I have continued that research in Tanzania, focusing on using implementation science methodology to adapt chemotherapy regimens for their safe use in low resource settings.
When in the US, I focus on clinical research in a variety of different fields as well as quality improvement. Current focuses include pediatric cancer survivorship and clinical outcomes such as fever in patients with severe neutropenia.
Bryce B. Reeve
Dr. Bryce Reeve is a Professor of Population Health Sciences and Professor of Pediatrics at Duke University School of Medicine. He also serves as Director of the Center for Health Measurement since 2017. Trained in psychometric methods, Dr. Reeve’s work focuses on assessing the impact of disease and treatments on the lives of patients and their caregivers. This includes the development of clinical outcome assessments using both qualitative and quantitative methods, and the integration of patient-centered data in research and healthcare delivery settings to inform decision-making. From 2000 to 2010, Dr. Reeve served as Program Director for the U.S. National Cancer Institute and oversaw a portfolio of health-related quality of life research in cancer patients. From 2010 to 2017, he served as Professor of Health Policy and Management at the University of North Carolina. From 2011-2013, Dr. Reeve served as President of the International Society for Quality of Life Research (ISOQOL). In 2015, he received the John Ware and Alvin Tarlov Career Achievement Prize in Patient-Reported Outcomes Measures. In 2017, 2018, 2019 and 2021, he was ranked in the top 1% most-cited in his respective field over the past 11-year period.
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