Risk factors for abandonment of Wilms tumor therapy in Kenya.

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 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. 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 = 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. 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.

Association between Socioeconomic and Psychological Experiences of Parents with Children on Leukemia Treatment in Kenyatta National Hospital, Kenya.

OBJECTIVE: The survival rate for children with leukemia has increased dramatically since the late 1990s; treatment effects of the disease can be extremely stressful for families. Research on psychological and socioeconomic effects of leukemia treatment had been conducted in Western countries, but little is known within Africa including Kenya. METHODS: This was a cross-sectional study with a sample of 62 out of 72 parents of children undergoing leukemia treatment at Kenyatta National Hospital. Data were collected between May and August 2015 using structured questionnaires while qualitative data were collected using focus group discussions. This manuscript is based on quantitative data which were entered into EpiData version 3.1 and analyzed using SPSS version 20. Psychological distress index was created by counting the number of psychological experiences reported by respondents. Kendall's tau-b was used to test the association between the psychological distress index and socioeconomic characteristics; P ≤ 0.05 was considered statistically significant. RESULTS: The respondents experienced anxiety, shock, and fatigue. Spending a higher proportion of family's income was associated with higher psychological distress index (P = 0.009). The economic challenge led to significantly heightened tension in the family (P = 0.021). CONCLUSIONS: Financial challenge is a major cause of psychological distress thus needs for financial support through collaboration with government institutions, for example, NHIF, development agencies, and nongovernment organization who can contribute toward the treatment cost. Need to decentralize effective leukemia treatment centers. Psychological support and counseling should be done to alleviate tension. The nurse needs to be empathetic when caring for the child and family as well as to apply the ethical principles of justice and beneficence so that the child gets the best care despite the financial challenge.

Wilms tumor survival in Kenya.

PURPOSE: Survival from Wilms Tumor (WT) exceeds 90% at 5 years in developed nations, whereas at last report, 2-year event-free survival (EFS) in Kenya reached only 35%. To clarify factors linked to these poor outcomes in Kenya, we established a comprehensive web-based WT registry, comprised of patients from the four primary hospitals treating childhood cancers. MATERIALS AND METHODS: WT patients diagnosed between January 2008 and January 2012 were identified. Files were abstracted for demographic characteristics, treatment regimens, and enrollment in the Kenyan National Hospital Insurance Fund (NHIF). Children under 15 years of age having both a primary kidney tumor on imaging and concordant histology consistent with WT were included. RESULTS: Two-year event-free survival (EFS) was 52.7% for all patients (n=133), although loss to follow up (LTFU) was 50%. For the 33 patients who completed all scheduled standard therapy, 2-year EFS was 94%. Patients enrolled in NHIF tended to complete more standard therapy and had a lower hazard of death (Cox 0.192, p < 0.001). CONCLUSION: Survival of Kenyan WT patients has increased slightly since last report. Notably, WT patients completing all phases of standard therapy experienced 2-year survival approaching the benchmarks of developed nations. Efforts in Kenya should be made to enhance compliance with WT treatment through NHIF enrollment.