Risk factors for abandonment of Wilms tumor therapy in Kenya.
Survival from Wilms tumor (WT) in sub-Saharan Africa remains dismal as a result of on-therapy mortality and treatment abandonment. Review of patients diagnosed from 2008 to 2011 in our Kenyan Wilms Tumor Registry showed a loss to follow up (LTFU) rate approaching 50%. The purpose of this study was to trace those LTFU, estimate the survival rate, and identify risk factors for treatment abandonment.



We administered a comprehensive survey to parents of patients with WT at the two largest referral hospitals in Kenya to identify barriers to care. We also telephoned families who had abandoned care to determine vital status and identify risk factors for treatment abandonment.



Of 136 registered patients, 77 were confirmed dead (56.7%), 38 remained alive (27.9%), and the vital status of 21 patients remains unknown (15.4%). After contacting 33 of the patients who either abandoned curative treatment (n = 34) or did not attend off-therapy visits (n = 20), the best estimate of 2-year overall survival of patients with WT in Kenya approaches 36%. Sixty-three percent of parents misunderstood treatment plans and 55% encountered financial barriers. When asked how to increase comfort with the child's treatment, 27% of parents volunteered improving inefficient services and 26% volunteered reducing drug-unavailability.



Treatment abandonment remains a significant problem contributing to increased mortality from WT in developing countries. This multi-center survey identified the barriers to treatment completion from the parental perspective to be lack of education about WT and treatment, financial constraints, need for quality improvement, and drug-unavailability. Pediatr Blood Cancer 2015;62:252-256. © 2014 Wiley Periodicals, Inc.
Department of Pediatrics, Vanderbilt University Children's Hospital, Nashville, Tennessee.
Jaime
J
Libes
Department of Human Pathology, University of Nairobi, Nairobi, Kenya.
Oliver
O
Oruko
Department of Haematology and Blood Transfusion, University of Nairobi, Nairobi, Kenya.
Fatmah
F
Abdallah
Department of Haematology and Blood Transfusion, University of Nairobi, Nairobi, Kenya.
Jessie
J
Githanga
Department of Surgery, Kenyatta National Hospital, Nairobi, Kenya.
James
J
Ndung'u
USAID-Ampath Partnership, Moi Teaching and Referral Hospital, Eldoret, Kenya.
Joyce
J
Musimbi
USAID-Ampath Partnership, Moi Teaching and Referral Hospital, Eldoret, Kenya.
Festus
F
Njuguna
Department of Immunology, Moi Teaching and Referral Hospital, Eldoret, Kenya.
Kirtika
K
Patel
Vanderbilt Epidemiology Center, Vanderbilt Institute for Medicine and Public Health, Nashville, Tennessee.
John
J
White
Department of Pediatric Surgery, Vanderbilt University Children's Hospital, Nashville, Tennessee.
Jason R
JR
Axt
Department of Pediatric Surgery, Vanderbilt University Children's Hospital, Nashville, Tennessee.
James A
JA
O'Neill
Vanderbilt Epidemiology Center, Vanderbilt Institute for Medicine and Public Health, Nashville, Tennessee.
Martha
M
Shrubsole
Department of Biostatistics, Vanderbilt University Children's Hospital, Nashville, Tennessee.
Ming
M
Li
Department of Pediatric Surgery, Vanderbilt University Children's Hospital, Nashville, Tennessee.
Harold N
HN
Lovvorn
D017281:Cost of Illness; D006801:Humans; D007630:Kenya; D011795:Surveys and Questionnaires; D015996:Survival Rate; D009396:Wilms Tumor / Q000401:mortality* / Q000628:therapy*; D028761:Withholding Treatment / Q000706:statistics & numerical data*
Kenya; Wilms tumor; treatment abandonment