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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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  • Grace Ellis,
  • Hutton Chapman,
  • Agness Manda,
  • Ande Salima,
  • Salama Itimu,
  • Grace Banda,
  • Ryan Seguin,
  • Geoffrey Manda,
  • Mercy Butia,
  • Minke Huibers,
  • Nmazuo Ozuah,
  • Alyssa Tilly,
  • Angela Stover ,
  • Ethan Basch,
  • Satish Gopal,
  • Bryce Reeve,
  • Kate Westmoreland
Grace Ellis
UNC Project
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Hutton Chapman
University of North Carolina at Chapel Hill School of Medicine
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Agness Manda
UNC Project
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Ande Salima
University of North Carolina Project
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Salama Itimu
UNC Project
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Grace Banda
UNC Project
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Ryan Seguin
UNC Project
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Geoffrey Manda
Texas Children's Hospital
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Mercy Butia
Texas Children's Hospital
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Minke Huibers
Texas Children's Hospital
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Nmazuo Ozuah
Texas Children's Hospital
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Alyssa Tilly
University of North Carolina at Chapel Hill School of Medicine
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Angela Stover
University of North Carolina at Chapel Hill Gillings School of Global Public Health
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Ethan Basch
University of North Carolina at Chapel Hill School of Medicine
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Satish Gopal
University of North Carolina at Chapel Hill Department of Medicine
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Bryce Reeve
Duke University School of Medicine
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Kate Westmoreland
University of North Carolina at Chapel Hill School of Medicine
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Abstract

Background: Patient-reported outcomes (PROs) that assess health-related quality of life (HRQoL) are increasingly important components of cancer care and research that have been infrequently used in sub-Saharan Africa (SSA). We aimed to longitudinally measure HRQoL among pediatric lymphoma patients in Malawi. 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, and Pain Interference) using the PROMIS scoring manual. 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=8, 11%). Most (n=51, 68%) were male, median age was 10 (IQR 8-12), 48 (66%) presented with advanced Stage III/IV, 61 (81%) were diagnosed with Burkitt lymphoma and 14 (19%) had 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 minimally important difference. Poor Lanksy performance status ≤ 70 and Pain Intensity = 10 at diagnosis were associated with increased mortality risk and worse survival. Conclusions: Our experience suggests incorporating assessments of HRQoL via PROs in oncology care is feasible in SSA, can provide prognostic information, and generates clinically meaningful data to inform supportive care interventions. Further, PROs offer an opportunity to include patient voices and prioritize holistic patient-centered care even in low-resource settings.

Peer review status:UNDER REVIEW

06 Nov 2020Submission Checks Completed
06 Nov 2020Assigned to Editor
06 Nov 2020Submitted to Pediatric Blood & Cancer
10 Nov 2020Reviewer(s) Assigned
30 Nov 2020Review(s) Completed, Editorial Evaluation Pending
01 Dec 2020Editorial Decision: Revise Minor
28 Feb 2021Assigned to Editor
28 Feb 20211st Revision Received
28 Feb 2021Submission Checks Completed
02 Mar 2021Reviewer(s) Assigned
12 Mar 2021Review(s) Completed, Editorial Evaluation Pending
13 Mar 2021Editorial Decision: Revise Minor
11 Jun 20212nd Revision Received
11 Jun 2021Submission Checks Completed
11 Jun 2021Assigned to Editor
17 Jun 2021Reviewer(s) Assigned