Parental Reports on Late Effects and Follow-Up Needs: A Single-Center Assessment of Childhood Cancer Survivorship Care in Kenya

Abstract

The WHO Global Initiative for Childhood Cancer will likely increase the number of childhood cancer survivors in resource-poor countries. This study explored survivorship care in Kenya through parental reports on late effects and the follow-up needs of childhood cancer survivors. Parents of Kenyan childhood cancer survivors (under 18 years old) who completed treatment for at least one year were interviewed using semi-structured questionnaires from 2021 to 2022. Parents of 54 survivors were interviewed. Survivors had solid tumors (52%) and hematological tumors (48%). Most (52%) received chemotherapy combined with either surgery or radiotherapy. Many survivors (72%) experienced symptoms according to their parents. The most prevalent symptoms were pain (37%), fatigue (26%), and ocular problems (26%). Eleven percent of parents observed limitations in the daily activities of the survivors. Parents of survivors with two or more symptoms were more likely to rate symptoms as moderate to severe (p = 0.016). Parents expressed concern about late effects (48%). Only 28% were informed about late effects at the hospital, despite 87% indicating they would have welcomed this information. Follow-up care was deemed important by 98%. Recommendations included providing education about late effects and organizing survivor meetings. Survivorship clinics should be established to ensure that follow-up information and care are accessible.