| dc.description.abstract |
Background. 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. Procedure. We administered a compre-
hensive 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. Results. 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 ¼ 34) or did not attend off-therapy
visits (n ¼ 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. Conclusions.
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. |
en_US |