WCC-019-Kenia-video-survivor-Alice-Karim
Research late effects and stigmatization of survivors in Kenya

 

Background

Over the past 50 years, childhood cancer survival has vastly improved. In the Netherlands we now speak of a cure rate of 75% on average, to almost 100% for certain subtypes of childhood cancer. In Kenya these figures are significantly lower, but here too the number of children and (young) adults who have survived cancer has been steadily increasing in recent years. We know that these ex-patients often also experience complaints at a later age from the therapy they underwent as a child. These can be physical complaints such as heart damage, infertility or fatigue, but also problems on the psychological level or with their functioning at school or work. That is why all children in the Netherlands who have had cancer, are followed for life at the LATER clinic in the Princess Máxima Center, so that the late effects of childhood cancer can be detected and treated in time.

 

Challenges

It is currently unclear how the survivors of childhood cancer in Kenya are doing. When children have completed their therapy at Moi Teaching and Referral Hospital, they often disappear from view. As a result, we do not know whether these children will experience problems from their treatment later in life. We also suspect that these children and their families may suffer long-term financial problems, discrimination and expulsion because they have previously had cancer.

Facts & figures

  • The current cure rate for children with cancer in Kenya is a maximum of 30%, while that in the Netherlands is 75%.

  • This study explores the physical, psychological and social late effects, social reintegration and stigmatization of childhood cancer survivors after their treatment at Moi Teaching and Referral Hospital in Eldoret, Kenya.

  • All children diagnosed with cancer between 2010 and 2019 and who have completed treatment for at least one year are eligible to participate in this study.

  • Project leader in Eldoret, Kenya is Dr. Festus Njuguna (pediatrician).

  • Project leaders from the Princess Máxima Center in the Netherlands are Prof. Gertjan Kaspers (pediatric oncologist) and Dr. Saskia Mostert (medical researcher).

  • The project will be carried out by the Dutch physician researcher Jesse Lemmen and the Kenyan researcher Sandra Langat.

 

Activities

  • During home visits, the parents of childhood cancer survivors and survivors over the age of 18 will be interviewed.

  • Questionnaires are used to map the late effects, social reintegration and stigmatization of childhood cancer survivors.

 

Impact

The insights provided by this study will be used in the development and implementation of an educational program to improve the social reintegration of childhood cancer survivors and to combat stigmatization. Based on the research findings, we will also be able to set up an outpatient clinic where children can be monitored after their recovery for the prevention and detection of late effects of childhood cancer.