Welcome to SIOP 2022 Interactive Programme
The Congress will officially run on CET time zone (Central European Time, Barcelona)
- Bindu Nair (India)
INTRODUCTION
“MONEY WAS THE PROBLEM”: CAREGIVERS’ SELF-REPORTED REASONS FOR ABANDONING THEIR CHILDREN’S CANCER TREATMENT IN UGANDA
- Barnabas Atwiine (Uganda)
Abstract
Background and Aims
Treatment abandonment contributes significantly to poor survival of children with cancer in low-and-middle-income countries (LMIC). In order to inform an approach to this problem, we investigated why caregivers withdraw their children from treatment.Treatment abandonment contributes significantly to poor survival of children with cancer in low-and-middle-income countries (LMIC). In order to inform an approach to this problem, we investigated why caregivers withdraw their children from treatment.
Methods
In a qualitative study, carried out in October and November 2020, in-depth interviews were conducted with caregivers of children who had abandoned cancer treatment at the Paediatric Cancer Unit of Mbarara Regional Referral Hospital in South-western Uganda. Recorded in-depth interviews were transcribed and analyzed to identify themes of caregivers’ self-reported reasons for treatment abandonment. The study was approved by the Review and Ethics Committee of Mbarara University of Science and Technology.
Results
Seventy-seven out of 343 (22.4%) children diagnosed with cancer abandoned treatment during the study period; 20 contactable and consenting caregivers participated in the study. The median age of the caregivers was 37 years and most (65%) were mothers. At the time of this study, eight (40%) children were alive and 5 (62.5%) were males; with a median age of 6.5 years. Financial difficulty, other obligations, the child falsely appearing cured, preference for alternative treatments, belief that cancer was incurable, fear that the child’s death was imminent and chemotherapy side-effects were the caregivers’ reasons for treatment abandonment.
Conclusions
Seeking cancer treatment for children in Uganda is an expensive venture and treatment abandonment is mainly caused by caregivers’ difficult socio-economic circumstances. This complex problem needs to be approached with empathy and support other than blame.
FURTHER DATA ABOUT THE TREATMENT ABANDONMENT PROGRAM IN OUAGADOUGOU
- Rolande Kabore (Burkina Faso)
Abstract
Background and Aims
to avoid treatment abandonment (TA) is a major challenge for pediatric oncologist. We conducted a program against TA in Ouagadougou. Support was given to families during this program either through free investigation in children under five (national health system) or thanks to the funds of the program itself. Primary results were presented during SIOP Africa 2022. We like to go in-depth into the details on support given and to analyze further secondary objectives of our program.
Methods
Eligibility criteria were involvement in one of the 3 diseases (Burkitt lymphoma, nephroblastoma or retinoblastoma), potential curability, and parent’s agreement to participate. Eighty-one children were included between November 1st 2019 and November 30th, 2020 (54 Burkitt, 16 nephroblastoma, and 11 retinoblastoma) among 139 prescreened patients (pts) for eligibility. Non curability was the reason of non-eligibility in 34 pts (of whom parents’ refusal of treatment in 5); and another cause in 24.
Results
To date, among the 81 pts,10 have dropped out during treatment (4 Burkitt,1 retinoblastoma and 5 nephroblastoma), 28 died (15 during treatment from toxicity or disease and 13 after completing treatment), 51 have completed treatment and 5 are currently on treatment. Financial help given was in average 82€ under 5 and 472€ over 5 years in Burkitt, 77€ in retinoblastoma and 185€ in nephroblastoma. We will present additional data on faster access to care in the whole population upon arrival in the Hospital.
Conclusions
although financial support may reduce treatment dropouts, subsidy is not a guarantee for family adhesion and survival rate remains low. A campaign to reduce diagnostic delays associated to support for families and access to family house near the hospital could result in reducing cancer mortality.