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A Reason for Optimism: Treating Chronic Pediatric Disease in Haiti

November 2018Diana Austin

A little boy who has been treated for juvenile arthritis does a joyful dance, wiggling his hips and stamping his feet, a wide smile on his face. Before and after pictures of a young girl with type 1 diabetes show her transformation from a 40-pound teen to a healthy young woman about to start a family.

These images, presented to a group of students, educators and researchers at the UCSF School of Nursing, represent the remarkable successes of the Kay Mackenson Clinic, a facility in Haiti’s Artibonite region that began as an entirely nurse-led clinic and that is dedicated to treating and supporting children with chronic, noncommunicable diseases. The group at UCSF, including several clinicians listening remotely from UCSF’s Mission Bay campus, had gathered to hear about Kay Mackenson, with an eye toward building on what were already strong and growing ties to UCSF and its School of Nursing.

The ties include a project that the School’s Linda Stephan is leading with two pediatric nurse practitioner students aimed at understanding how a diabetes camp can enhance its participants’ self-confidence and ability to self-manage their diabetes.

Managing Chronic Disease in a Low-Resource Setting

The Kay Mackenson Clinic provides care and support to children with a variety of chronic conditions, including heart disease, asthma, kidney disease, sickle cell disease and epilepsy, but its largest focus is on children with type 1 diabetes. It’s the brainchild of a pair of Texas physicians, Ric and Wendy Bonnell, and pediatrician Chris Carpenter, of the UCSF School of Medicine. Carpenter’s interest in global health intersected with an interest in diabetes that was stoked by a friendship with Associate Clinical Professor of Family Health Care Nursing Maureen McGrath, a pediatric nurse practitioner and director of the UCSF School of Nursing’s minor in diabetes.

Julia von Oettingen, a pediatric endocrinologist from Montreal, has served as the Kay Mackenson Clinic’s first medical director since its 2012 inception, working from Boston and Montreal. In November 2016, Haitian pediatrician Ketly Altenor joined as the clinic’s first on-site medical director.

Viviane Lorgeat, the clinic’s head nurse, has been, according to Carpenter, the clinic’s driving force since its founding and has since trained three other nurses to provide care for its young patients. “The biggest stroke of luck I had was meeting Viviane,” Carpenter says. To this day, Lorgeat oversees clinical care and patient education, as well as its outreach programs, and helps with the clinic’s administrative needs.

And nurses remain at the center of Kay Mackenson’s operations. A staff of four nurses, including Lorgeat, rotates through four-day shifts, working and living at the clinic 24 hours per day. They prefer the schedule, Lorgeat says, because transportation in the area can be unreliable and the commute between home and the clinic can take many hours.

Raising Awareness of Juvenile Diabetes

Local hospitals and clinics that don’t have the resources to manage diabetes – most don’t even have insulin – refer their young patients with diabetes to the Kay Mackenson Clinic. Lorgeat says that fact highlights one of the biggest challenges to treating juvenile diabetes in Haiti: Many people aren’t familiar with type 1 diabetes.

She says, “They know type 2, but they don’t believe children can have diabetes. [One patient] spent six months trying to convince her parents that she had a real, organic disease. It was only when she could walk and see again that they were convinced.” Lorgeat then engaged those parents to speak with other parents about the importance of recognizing type 1 diabetes and getting early treatment.

Accessing initial treatment is only part of the battle for Kay Mackenson’s patients and their caregivers. With chronic diseases like diabetes, ongoing care and self-management are crucial. Among the challenges: Haiti’s relatively high level of food instability and lack of literacy and numeracy can complicate self-care, so Lorgeat and her staff make sure all patients can effectively manage their condition before they are discharged from the inpatient program. In some cases, that amounts to weeks or, in a few cases, years living at the clinic.

After discharge, patients are managed as outpatients; the clinic’s nurses take turns each day contacting patients at home to check on glucose management for those with diabetes and international normalized ratio (INR) levels (which measure blood clotting time) for those who have undergone heart valve replacement surgery and must use oral anticoagulant medication for the rest of their lives. Lorgeat estimates the nurses speak to about 60 patients per day by telephone.

Education and Research

Lorgeat, Carpenter and other clinic staff quickly recognized that supporting their young patients in managing their chronic conditions meant ensuring they had access to basic education. In 2015, clinic staff set up an informal school to increase numeracy and literacy among its patients. The program was formalized last year with support from a California donor who has committed to providing tuition, supplies and transportation to 40-plus “KMC Scholars,” who will receive a complete secondary education and university preparation.

The clinic’s unique position as a magnet facility for children with chronic disease also allows researchers to gather data for much-needed research to increase knowledge about pediatric chronic disease in Haiti. The clinic’s associated researchers have published papers on the epidemiology and outcomes of pediatric diabetes in Haiti, nutritional deficiencies and blood lead levels among Haitian children.

Partnering with UCSF to Expand Capacity

Because one of Lorgeat’s primary goals is to expand the clinic’s reach and capacity, she and clinic staff hope to further develop a partnership with the School of Nursing. To that end, in 2015, the Kay Mackenson Clinic started a summer camp, Kan Fraternité, for children with diabetes, modeled on camps run by the nonprofit Diabetes Youth Families (DYF) in partnership with the School of Nursing under McGrath’s leadership.

Nurses and other volunteer clinicians from UCSF work with local clinicians to staff Kan Fraternité, and the camp has expanded this year, moving to a new location with more facilities, including a swimming pool.

The project Stephan and her two students are leading will develop an evidence-based tool to evaluate the camp’s impact on participants’ self-confidence and ability to self-manage their diabetes. The findings will help Kay Mackenson’s staff refine the program with the aim of further improving outcomes for campers.

In addition, Lorgeat recently visited UCSF both to spend time with Stephan and to tour several pediatric specialty clinics at UCSF’s Parnassus and Mission Bay campuses, including the Madison Clinic for Pediatric Diabetes, and at Priscilla Chan and Mark Zuckerberg San Francisco General Hospital and Trauma Center. Lorgeat also visited pediatric primary care clinics at Zuckerberg San Francisco General, as well as a clinic in Berkeley.

Her aim is to take lessons learned – including from UCSF’s nurse-led clinics – back to Haiti to establish satellite chronic disease management programs in existing clinics, in part by training providers at those clinics to diagnose and manage an array of chronic pediatric conditions. “Through this collaboration, it is really the nurses in Haiti that are identifying the changes that will occur in their clinic,” says Stephan. “They are culturally adapting and borrowing from U.S. chronic disease management models that are considerate of the impact social determinants of health have on individuals living with chronic disease, which is especially important in enhancing health care quality and equity for this vulnerable population of Haitian children.”

Carpenter says this new training will be a shift for many clinicians in Haiti, who are already good at managing acute problems but, due to lack of resources, have less training and experience with chronic disease. He and Lorgeat are confident, however, that the resource-related challenges can be overcome, and that Haiti’s clinicians can expand the country’s ability to manage chronic disease among its children.

“One of the key lessons I’ve learned,” says Carpenter, “is to maintain optimism even in the direst circumstances.”