Examining the Patient’s Entire Journey
The NCDI Poverty Network’s second study in a trio assessing 16 health facilities in 2022–23, before PEN-Plus implementation, focuses on how providers deliver care, from screening and diagnosis through treatment and long-term support.
Umu Barrie, a schoolteacher who lives with type 1 diabetes, registers her details with Joshua Kamara, a data clerk at the PEN-Plus clinic at Koidu Government Hospital in the Kono District of Sierra Leone. Partners In Health is the implementing partner for that clinic. (Photo: ©Michael Duff/World Health Organization)
A full assessment of a health facility’s ability to deliver care does not only involve whether the facility has the necessary staff, skills, and supplies. It also examines how the care is delivered; in other words, the processes and systems that move a patient from screening and diagnosis through treatment and long-term support.
That’s the idea behind the second in a trio of studies that assessed 16 first-level hospitals in lower-income countries in 2022 and 2023, to gauge baseline conditions before implementation of the groundbreaking model of care known as the Package of Essential Noncommunicable Disease Interventions–Plus, or PEN-Plus.
PEN-Plus integrates care for severe, chronic noncommunicable diseases—such as type 1 diabetes, sickle cell disease, and rheumatic and congenital heart disease—into public health systems by decentralizing resources, increasing staff training and mentoring, and bringing affordable care closer to people in rural and peri-urban areas.
Dr. Chantelle Boudreaux, lead author of the organizational study, said a primary goal was to examine how health services were delivered at the hospitals, and to better understand the dynamics behind whether patients with NCDs could receive the services they needed.
“We were looking at the longitudinal care system and thinking about the patient experience along the entire journey of care, and how the health system supported patients along all the steps,” said Dr. Boudreaux, the associate director for integration research at the Center for Integration Science in Global Health Equity at Brigham and Women’s Hospital. “Those systems and the infrastructure support for patients are really what we wanted to come out in this study.”
The Center for Integration Science conducted the study in collaboration with governments and implementing partners in sub-Saharan Africa and South Asia. The center is the U.S. co-secretariat of the NCDI Poverty Network, in tandem with the co-secretariat in Mozambique.
The study, “Organization of Services for Severe Chronic Noncommunicable Diseases at First-Level Hospitals in Nine Lower-Income Countries: Results from a Baseline Assessment of PEN-Plus Initiation,” appeared in PLOS Global Public Health on May 5.
Its publication followed that of the trio’s first study, “Facility Readiness for Decentralized Package of Essential Noncommunicable Disease Interventions–Plus (PEN-Plus) Care in Nine Lower-Income Countries,” which PLOS Global Public Health published in April.
Dr. Alma Adler, director of research for the Center for Integration Science and senior author on the manuscript, said the research team also recently submitted for publication a paper detailing the third study. That study examined the hospitals’ health information systems, such as patient charts and records, and how the facilities tracked and used patient data.
The studies and publications come at a time of significant growth in the number of countries adopting and implementing the PEN-Plus model.
Eswatini, Lesotho, Niger, and Somaliland have formed NCDI Poverty Commissions in recent months. Commissions assess disease burdens and set priorities for care, which are key initial steps in the process toward implementing PEN-Plus. The additions mean 27 countries across sub-Saharan Africa and South Asia are now exploring or implementing PEN-Plus to improve care for people living with severe NCDs.
The trio of studies in 2022–23 assessed hospitals in nine of those countries: Ethiopia, Kenya, Mozambique, Nepal, Sierra Leone, Tanzania, Uganda, Zambia, and Zimbabwe. The 16 assessed facilities serve a combined total of nearly 5.3 million people across the nine countries.
Although those were not the only health facilities serving the mostly rural populations, nearly all the assessed facilities represented first-level care, such as district hospitals. Without strategic integration to improve health systems and ensure an effective organization of services, many of those millions of people would need to travel significant distances to higher-level facilities, such as national hospitals, for diagnosis and management of severe, chronic NCDs.
The primary method used in the second, organizational study was a survey distributed to all hospitals in March 2022. Responses were received between June 2022 and February 2023. Leaders of each hospital selected their primary survey respondents, with most selecting a technical officer or a monitoring and evaluation officer on staff.
Dr. Boudreaux said the surveys sought opportunities to reorganize workloads in hospitals, such as services delivered by physicians that could be taken over by senior nurses, or care delivered in emergency departments that could be handled in routine care.
The study’s authors wrote that they found numerous such opportunities.
“Gaps in the organization and availability of services for common and severe NCDs were revealed across [the assessed] first-referral hospitals,” the study’s authors wrote. “These gaps were particularly profound for diagnostic and treatment options requiring specialist training and equipment, including several services linked to PEN-Plus.”
Those gaps pointed to needs for more training; systems focused on early detection, appropriate treatment, longitudinal care, and continuous supply of medicines and commodities; and procedures for keeping patients in care.
Patients who were lost to follow-up or who fell out of the care system were a widespread concern that reflected ineffective systems for tracking and monitoring patients.
“Importantly, a large proportion of hospitals were unable to provide data on the number of patients in care,” the study’s authors wrote. “For example, while 15 out of 16 facilities report offering care for type 1 diabetes, only 11 of 16 were able to provide an estimate of the number of patients in care.”
Dr. Adler noted that the study did not necessarily reflect a need for systems that are standardized across PEN-Plus facilities—but rather, customized systems that meet the specific needs and disease burdens of a given community and country.
“Each country’s priorities vary slightly,” Dr. Adler said. “Countries write strategic plans tailored to their situation, so details will differ across countries, as well.”
Dr. Boudreaux hopes that, as those systems are created and strengthened, the organizational study will spur conversations about how patients move through care in PEN-Plus clinics and hospitals.
“To be able to continue improving care,” she said, “we need to understand these dynamics better.”