My collaborator and I are traveling to Eldoret, Kenya to provide a training for physicians, nurses and other health care professionals who work with adolescents with sickle cell disease. Adolescence is a special time of life when people learn to be more independent, learn to have confidence in themselves, learn complex decision-making, and increasingly take responsibility over their own health and life. When a person has a chronic disease like sickle cell disease, which can cause severe health problems and even death if people do not take their medications and take care of their health, adolescence becomes a very risky time. There are evidence-based ways that health care workers can support adolescents and families through this transition from childhood to adulthood, shown to improve health outcomes in adolescents with chronic diseases.
The hematology clinic at Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya, has recognized a need to take more specialized care of their adolescent patients, but there are no adolescent sub-specialists currently working in their hospital or anywhere in Western Kenya. Our team (consisting of an adolescent medicine specialist and myself, a medical education specialist) has planned a hands-on, skills-based training that will engage youth themselves in training their doctors and nurses to provide care that respects and responds to the special needs of adolescents during this critical developmental stage. This training will improve the quality of care provided to adolescents in this clinic and set the stage for further training of other clinicians throughout the MTRH catchment area.
Sickle cell disease is a genetic blood disorder that causes chronic severe pain, lung damage, stroke, and other severe health consequences if not treated aggressively from the time of birth. In high-prevalence areas like those in the catchment area served by MTRH, up to 4% of babies are born with sickle cell disease; until recently, 40-90% of them died before the age of 5.
Now, thanks in part to efforts from international partnerships with MTRH, there is increasing use of simple, effective medications that help children in the MTRH catchment area live longer. Clinics are therefore starting to see more and more adolescents with sickle cell disease. Kenyan hematologists and general practitioners, as well as nurses and other health care professionals, need to be better prepared to help these children and their families navigate adolescence so that they may grow into health, productive adults.
Adolescents with chronic diseases have special needs and require specialized counseling, consideration of confidentiality and growing autonomy, and support for their psychosocial well-being during this tricky time of life. We know from our ongoing collaboration with the hematology team at MTRH that there are very specific topics, like substance use disorder, mental health and reproductive health, that start to become important in adolescence and that they have identified as critical training needs.
By training this cadre of health care professionals to take excellent, evidence-based care of Kenyan adolescents with sickle cell disease--a large and under-recognized chronic disease population--we will help these children be healthier, live longer, and have the quality of life that they deserve.
We expect that by conducting this hands-on, skills-based training with health care providers, we will increase the use of evidence-based practices in the hematology clinic at MTRH, which will increase patient satisfaction and confidence with their care, ultimately leading to much better health outcomes for adolescents with this deadly, lifelong disease. Moreover, this is only the first step in what we hope will become a long and fruitful partnership to improve the quality of care for Kenyan adolescents with sickle cell disease; the MTRH hematology clinic conducts training and capacity building activities themselves within their catchment area (which includes 12/17 Kenyan counties considered "high-burden" for sickle cell disease), and as a next step after this training, we hope to continue to support the clinic staff in not only gaining these skills but in training others to provide this care as well.
We will also include adolescents with sickle cell disease in the training themselves, as mock patients to help the clinicians practice their new skills. We expect that this will be an empowering experience for older adolescents with sickle cell disease, and will lead to other opportunities for peer mentorship, formation of a youth advisory board for the clinic, and other engagement of youth themselves in improving care for adolescents with this disease.
We know that this model of training and partnership works for a different chronic disease population. The HIV clinic at MTRH has used similar methods, and has an average medication adherence rate of greater than 96%, one of the best in the world; we expect that by empowering youth and clinicians with this training to work together respectfully and holistically, we can achieve similar impact in this population.
We trained 28 providers -- nurses, doctors and other health care workers -- in adolescent health. These providers primarily take care of adolescents with sickle cell disease, and we partnered with youth themselves to teach them specific psychosocial interviewing skills that are known to work in motivating adolescents to change their behavior or take better care of their health. Over four days, we co-designed case scenarios with youth, taught our Youth Trainers to be standardized patients to help providers practice their skills, and trained the providers themselves. I spent a month in Kenya preparing for and conducting the training, and continue to engage with this team on a long-term evaluation of adolescent health needs in their clinic!
