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A paediatric sickle cell clinic in Kilifi is reshaping how children with the disease are treated in rural Kenya, offering a model of care that has helped more patients survive into adolescence and adulthood.

The clinic, based at Kilifi County Referral Hospital, was established in 2003 to provide routine outpatient care for children with sickle cell disease. Over the years, it has grown into the main referral hub for sickle cell services along the Coast region.

Dr Sophie Uyoga, a senior researcher at the Kenya Medical Research Institute (KEMRI), said the clinic began as a basic outpatient service but has evolved into a comprehensive programme combining specialized treatment and long-term research.

“This clinic started as basic outpatient care, but it has evolved into a comprehensive programme for both specialized treatment and research,” Dr Uyoga said.

Researchers presented the clinic’s progress during the 16th KEMRI Annual Scientific and Health Research Conference (KASH), highlighting how structured follow-up can improve survival and quality of life for children living with sickle cell disease.

The clinic now serves about 1,300 patients each year and has enrolled more than 2,500 individuals into its registry since it began. Children receive regular reviews and standard care including hydroxyurea therapy, penicillin prophylaxis and malaria prevention.

According to Dr Uyoga, gaps in training across the health system have been a major challenge, particularly in rural settings where sickle cell cases are less frequently seen.

“We realised there was a challenge in how patients were being managed, most healthcare workers don’t know how to manage these patients because we haven’t seen a lot of them.”

Despite being located in a rural setting, the clinic provides advanced diagnostic services, including stroke screening using transcranial Doppler, splenic ultrasound, CT imaging and specialized laboratory testing.

Long-term data from the programme show clear gains, but also serious complications. About 30 percent of children in the clinic have ever experienced a stroke, underlining the need for routine monitoring of those at risk.

The biggest change over the years is that more children are now surviving than in the past, when many died young before reaching adolescence.

“In the past, many of these children used to die before, now a lot of them are surviving, and we have a big adolescent and youthful population that the health system was not ready for," said Dr Uyoga 

That success has created difficulties in transition into adult care. While hundreds of children are followed in paediatric services, only about 300 individuals are registered at the adult clinic, and loss to follow-up during transition at age 18 accounts for around 40 percent.

Dr Uyoga said the next priority is ensuring that gains made in childhood are not lost when patients move into adulthood.

“There is a real risk that the gains we have made in childhood are lost when young people move into adulthood,” she said.

“We need a well-coordinated transition care package that supports teenagers through this stage.”

Clinicians point to barriers such as transport costs, the expense of laboratory tests and hydroxyurea, and limited psychosocial support for adolescents.

The team is now focusing on strengthening transition systems and building capacity among healthcare workers to ensure the health system is ready for the growing number of young adults living with sickle cell disease.

“This is not just about survival anymore, It is about ensuring these children can grow up and live full lives," emphasized Dr Uyoga.

Researchers say the Kilifi clinic offers a practical model for strengthening sickle cell services in Kenya, showing that structured outpatient care and long-term follow-up can be delivered even in rural health settings.