Risk factors for abandonment of Wilms tumor therapy in Kenya

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 2008–2011 in our Kenyan Wilms Tumor Registry showed a loss to follow up (LTFU) rate approaching 50 percent. 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.

Treatment abandonment in children with cancer in Sub‐Saharan Africa: Systematic literature review and meta‐analysis

“…Seven studies were excluded; a full list of these and the reasons for exclusion are shown in the supplementary material. All studies were cohort studies, four were single‐centre (Mostert et al., ; Mtete et al., ; Njuguna et al., ; Slone et al., ) and two multi‐centre (Axt et al., ; Libes et al., ). The countries where the studies took place were Kenya (Axt et al., ; Libes et al., ; Mostert et al., ; Njuguna et al., ), Malawi (Mtete et al., ) and Zambia (Slone et al., ).…”

“…The risk of bias in each study was assessed using the Newcastle‐Ottawa Scale, the summary of the findings is shown in Table . Briefly, all studies scored highly for selection apart from one where the comparison cohort had different forms of cancer (Mtete et al., ); for comparability two studies had no comparison group at all meaning only proportions could be calculated (Libes et al., ; Njuguna et al., ); and all studies had large loss of subjects of unknown significance. Two studies also used self‐report measures (Libes et al., ; Njuguna et al., ), although as this subject has high saliency and this is an appropriate way of collecting these data, no reduction was made for this.…”

“…Six studies were included in the final analysis, of these: three were retrospective reviews of children treated for Wilm's tumour in Kenya (Axt et al., ) and various forms of cancer in Kenya (Mostert et al., ) and Zambia (Slone et al., ); two were based on interviews with parents of children who had abandoned care in Kenya (Libes et al., ; Njuguna et al., ) and one compared a retrospective general cancer group with prospective Kaposi's sarcoma and Burkett's lymphoma groups in Malawi (Mtete et al., ). For the two studies based on interviews with parents no comparison group existed, so only the proportions who attributed abandonment of treatment to different factors could be calculated; for other studies, the risk and relative risk of having the characteristic among those who did and did not abandon treatment was able to be calculated.…”

Contributing factors and outcomes of treatment refusal in pediatric oncology in Germany

“…4,5 In developing countries, patients refused or abandoned treatment due to logistical, financial, or social reasons, such as distance from the hospital and difficult physician-patient relationships due to social background or inadequate health insurance. [6][7][8][9] A recent survey of respondents from the 101 mostly low-and middleincome countries revealed a rate of treatment abandonment of 15%. 5 In El Salvador, a treatment refusal rate of 13% was determined from a sample of 612 patients with cancer, under 16 years of age, within the given investigation period; in Indonesia, 35% of 164 patients with acute lymphoblastic leukemia (ALL) refused or abandoned treatment.…”

“…Although overall survival rates had improved, treatment refusal and treatment abandonment have been described in developing as well as high‐income countries . In developing countries, patients refused or abandoned treatment due to logistical, financial, or social reasons, such as distance from the hospital and difficult physician–patient relationships due to social background or inadequate health insurance . A recent survey of respondents from the 101 mostly low‐ and middle‐income countries revealed a rate of treatment abandonment of 15% .…”