Abstract:
Introduction International survivorship guideline
consortia have developed strategies to prevent, detect
and manage late effects of childhood cancer survivors.
However, recommendations do not adequately reflect
the everyday reality of paediatric oncology care in low-
and middle-income countries. In this study protocol, a
survivorship intervention programme, comprising an
educational component and a follow-up component, is
described. The Educational Programme aims to improve
follow-up adherence of childhood cancer survivors
through increasing survivorship knowledge of caregivers.
The Follow-up Programme aims to map late effects by
implementing a follow-up form at the outpatient clinic to
be used by trained healthcare providers.
Methods and analysis This non- randomised prospective
clinical trial will be performed at a referral hospital in
Western Kenya. 100 caregivers of children diagnosed with
cancer, who will complete treatment within 2 months, will
be enrolled and followed for 24 months after completion
of treatment. A caregiver control group receiving usual
care will be recruited, and sequentially, caregivers will be
included in an intervention group to attend an educational
group session where they receive educational materials
(video, booklet and Survivorship Card). Primary study
outcome will be survivors’ follow-up adherence. Survivors
will be considered lost to follow-up after they miss a
scheduled appointment and do not revisit the clinic for
more than 6 months. Mixed models regression analyses
will be performed to determine intervention effects on
follow-up adherence and on caregiver survivorship
knowledge uptake. Additionally, healthcare providers will
be trained on follow-up care, whereafter a form will be
introduced at the outpatient clinic to document late effects
in paediatric survivors attending the clinic for the period of
a year. Secondary outcomes will be late effects prevalence
as documented in the follow-up form and caregiver and
healthcare provider survivorship knowledge uptake.
Implementation measures (reach, potential effectiveness,
adoption, satisfaction and maintenance) will be evaluated
for both programmes.Ethics and dissemination The Institutional Research
and Ethics Committee has approved the study protocol.
Findings will also be shared with governmental and non-
governmental organisations that support children with
cancer in Kenya to inform their target audiences and guide
their policy development.
Lessons learnt from this study could inform healthcare
providers and policy makers on how to shape survivorship
programmes in the Kenyan context and possibly
implement similar programmes in other centres in Sub-
Saharan Africa.
Trial registration number NCT06680687.
