Improving health outcomes for adolescents with Sickle Cell Disease

JBI Clinical Fellows: Making a world of difference

Sickle cell disease is a serious, inherited, lifelong condition characterised by chronic haemolytic anaemia, bacterial infections, recurrent vaso-occlusive episodes that cause pain and widespread organ damage. The disease is associated with a very high rate of mortality of about 50-90% and lifelong morbidity.

Chikondi Chimbatata is an Advanced Childhood Nurse at Mzuzu Central Hospital in northern Malawi. The hospital’s paediatric outpatient clinic operates twice a week and attends to 30-40 patients with sickle cell disease each day. Approximately 40% of Mzuzu Central Hospital out-patient department patients are adolescents.

Chikondi was sponsored to participate in JBI’s Evidence Implementation Training Program (formerly Evidence-based Clinical Fellowship Program) in order to develop the knowledge and skills required to lead practice change in her clinical setting.  As part of the program, Chikondi developed an evidence implementation project to improve health outcomes for adolescents with sickle cell disease.  

Adolescents with sickle cell disease have the highest rate of morbidity as they struggle to manage their condition through early recognition of signs and symptoms, when to seek medical care and to practice routine self-care behaviours. Unique features characterising the experience of adolescents with sickle cell disease include the transition from paediatric primary care to adult primary care. 

The number of adolescent patients is expected to increase due to improvements made in the diagnosis, treatment and follow up care, enhancing the need for more adolescent’s support through education and counselling.  

"Evidence suggests that adolescents with sickle cell disease have limited disease knowledge and hence may benefit from educational interventions given that they are transitioning to take increasing responsibility for their own condition and for the routine practice of self-care behaviours”, Chikondi says.

A baseline audit conducted by Chikondi found that health education practices by nurses were sub-optimal due to inadequate knowledge and limited opportunity for training. In addition, there were no guidelines or resources for nurses to use to assist them to educate adolescents with sickle cell disease.

“The aim of my evidence implementation project therefore was to promote evidence-based practice by nurses when educating and counselling adolescents with sickle cell disease at the outpatient setting, thereby improving adolescents’ knowledge of the disease”.

Initiatives such as education and training for health professionals caring for adolescents with sickle cell disease; structured education programs for adolescents with sickle cell disease; training adolescents on self-care management practices; and the development of education guides and resources for facilitating adolescent education sessions were implemented with the enthusiastic support of management, doctors and nurses.

“In togetherness there is power”, Chikondi says. “Staff came together, took ownership of the project and even came in on weekends to attend training sessions.”

Chikondi’s implementation project to improve education for nurses and instigate training programs for adolescents resulted in significant increases in nurse and patient knowledge of evidence-based practices.

A follow up audit confirmed that all nurses caring for adolescents with sickle cell disease received education and training as part of the project. A knowledge assessment found that nurses’ knowledge for training adolescents with sickle cell disease increased from 44% prior to education and training, to 85% following the structured education programs.

Adolescents who attended the interactive education sessions facilitated by the nurses increased their knowledge of sickle cell disease from 26% to 72%. Importantly, their knowledge of self-care practices increased from 20% to 74%.

The project’s initial success is being sustained by conducting ongoing adolescent education sessions; regular peer support group forums to exchange experiences and discuss challenges; and by transferring knowledge to other health workers with mentoring projects. 

Research is also currently being undertaken to investigate the impact of adolescents’ improved knowledge on school attendance, adherence to medication and clinic appointments, emergency visits, hospitalisation and quality of life.