PEN-Plus Project

Introduction to PEN-Plus

The Package of Essential NCD Intervention-Plus (PEN-Plus) is an integrated care delivery model focused on alleviating the burden of non-communicable diseases (NCDs) such as type 1 diabetes (T1D), rheumatic heart disease (RHD), congenital heart disease (CHD), and sickle cell disease by increasing the accessibility and quality of severe and chronic NCD care at first-level hospitals. This was initiated by the NCDI Poverty Network, whose co-secretariat is based at Harvard Medical School, USA.

PEN-Plus complements the World Health Organization’s Package of Essential Non-communicable Disease Interventions (WHO PEN), which provides basic NCD services for common and less severe cardiovascular diseases (CVD), Diabetes Mellitus, Chronic respiratory disease, and cancer at health centers in low-and middle-income countries (LMICs) that are home to more than 90 percent of the population.

In many low- and middle-income countries (LMICs), chronic care services for these severe conditions are only available at referral hospitals in major cities, making treatment both inaccessible and unaffordable for the poor. As a result, many poor children and young adults go without treatment for severe conditions that almost always lead to premature death if left untreated. PEN-Plus addresses this service gap by bringing lifesaving chronic care for severe NCDs to first-level hospitals. PEN-Plus trains healthcare providers such as clinical officers and nurses in the skills needed to provide integrated chronic care services for a group of severe NCDs, including diagnosis, symptom management, psychosocial support, palliative care, and referral for surgical and other specialty care when necessary. PEN-Plus providers receive training and mentorship from specialists at referral hospitals.

An integrated health service delivery system with PEN-Plus at the first-level referral hospitals is also expected to reduce the caseload at tertiary referral hospitals. This endeavor holds significant potential to transform the discourse on NCD service delivery, contributing towards the achievement of Universal Health Coverage (UHC) and the Sustainable Development Goals (SDGs). Furthermore, it can serve as a pivotal cornerstone in establishing a decentralized NCD delivery system with the potential for a national scale-up.

The PEN-Plus Partnership in Nepal

KIOCH received grant support from the NCDI Poverty Network to implement PEN-Plus in Nepal in 2021. This is an initiative of the Nepal NCDI-Poverty Commission, housed in KIOCH, to reach the poorest population in Nepal and address severe chronic NCDs. This approach aims at decentralizing NCD service delivery at lower levels of the health system to maintain the continuum of care, systematize a hierarchy of referral chains from the primary health care center (PHCC) to the first-level referral center (usually a district hospital) and then to the higher center, and ultimately protect the vulnerable population from financial hardship.

Now, in partnership with the Ministry of Health and Population (MoHP) with the involvement of various departments of health services, KIOCH is implementing the PEN-Plus project in Nepal. Likewise, in 2022, KIOCH received funding support from UNICEF Nepal to expand the very project in four more districts with a precise focus on severe and chronic NCDs among children and adolescents, including neurodevelopmental disorders.

Therefore, the PEN-Plus project incorporates integrated care teams to provide chronic care for below listed severe NCDs at first-level referral hospitals:

1. Diabetes Mellitus (DM): Type I and Type II DM
2. Cardiovascular Diseases (CVDs): Rheumatic Heart Disease (RHD), Congenital Heart Disease (CHD), Ischemic Heart Disease (IHD), and Hypertension
3. Chronic Respiratory Diseases (CRDs): Asthma and Chronic Obstructive Pulmonary Disease (COPD)
4. Hemoglobinopathies: Sickle Cell Disease (SCD) and Thalassemia
5. Cancer: Childhood Cancer, Cervical Cancer, and Breast Cancer
6. Neurodevelopmental disorders: Intellectual Disability, Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder, and Epilepsy

PEN-Plus Partners:

NCDI Poverty Network | Brigham and Women’s Hospital | Harvard Medical School 

Project title: The PEN-Plus Partnership: Country-level PEN-Plus Project Initiation & Implementation in Nepal

Project duration: November 2021-October 2024 (36 months)

Target group: All population with severe chronic NCDs including other vulnerable population

Sites: Three districts, namely, Jhapa (Koshi Province), Bardiya (Lumbini Province), Dolakha (Bagmati Province)

UNICEF Nepal

Project title: Strengthening Primary Health Care and Referral System for Prevention and Management of NCDs including Neuro-developmental Disorders among Children and Adolescents in Nepal (C&A PEN-Plus)

Program duration: September 2022- December 2025

Target group: Children and adolescents (0-19 years), Health care workers (HCWs), Female Community Health Volunteers (FCHVs), community volunteers, parents

Sites: Four districts, namely, Siraha (Madhesh Province), Gulmi (Lumbini Province), Dailekh (Karnali Province), Bajhang (Sudurpaschim Province)

Figure: PEN-Plus Partnership implementation sites in Nepal

Table: Names of selected first-level hospital for PEN-Plus implementation vs. its referral hospital in Nepal

Major scope of work of PEN-Plus Partnership in Nepal:

1. Demonstration of PEN-Plus Clinical Model and establishment of a referral link:

Establish model NCD unit/PEN-Plus Clinic in each first-level hospital which will comprise of health services related to heart failure, advanced RHD, complicated hypertension, type-1 diabetes, severe chronic respiratory diseases, malignancies, and palliative care. The PEN-Plus clinics will be set up at each of the three selected first-level hospitals, one of which will be in a rural setting. Clinics staff will be trained to provide early detection, chronic care, and appropriate referral and counter-referral for patients with severe or complex NCDs including type 1 and non-insulin-dependent diabetes, chronic respiratory diseases, rheumatic and congenital heart disease, cervical and breast cancer and sickle cell diseases (at the site with a high burden of sickle cell diseases). A proper chain of referral will be established and maintained between the primary health care facilities with the first-level hospitals and the linkage between first-level hospitals and tertiary centers in each province.

1. Establishment of PEN-Plus Training Center(s):

Throughout the project, support the PEN-Plus clinics to mature into PEN-Plus training sites, in preparation for national scale-up. The KIOCH and NCDI Poverty Commission members will collaborate with NCD Section, Epidemiology and Disease Control Division (EDCD), MoHP Nepal, WHO Country Office, and National Health Training Center to conduct training. The experts from NCDI Poverty Commission will be involved in mentorship. In addition, the commission will also coordinate with relevant stakeholders to conduct:

• Orientation workshop on training content and model for NCD specialists targeted to PEN-Plus prioritized conditions at the higher referral centers of the targeted first level
• Training of Trainers (ToT) for General Practitioners (GPs), Medical Officers (MOs), and nursing officers/Senior Nurses of the three sites on NCDs at the first level referral.
• Skills based-training of mid-level health care workers (nurses, HA, AHW) by the trained GPs and MOs at the first level referral.
• Refresher training for trained hospital staff

1. Development of PEN-Plus Policies for National Operational Plan:

Work with national stakeholders including the Ministry of Health and Population to describe, measure, and advocate for PEN-Plus, ultimately supporting the development of a national PEN-Plus operational plan towards possible scale-up. Evidence generation part will be coordinated with Nepal Health Research Council, Government of Nepal.

In addition to these core scopes of work of both the projects, the C&A PEN-Plus also works to:

• Strengthen primary health care and referral facilities for prevention, care and treatment of NCDs in children and adolescents.
• Improved engagement of policymakers at all levels, on NCDs in children and adolescents
• Improved awareness and engagement of community members on NCDs in children and adolescents

  Figure: PEN-Plus Clinics in an integrated NCD Services Model

Progress:

“The PEN-Plus Partnership: Country-level PEN-Plus Project Initiation & Implementation in Nepal” progress:

1. PEN-Plus inauguration and official launch of PEN-Plus clinics at Damak hospital by chief of Health Coordination Division, MoHP, and by Secretary, MoHP at Bardiya hospital
2. National and international stakeholders’ engagement and collaboration:
   1. Local stakeholders meeting with MoU signing at all the PEN-Plus sites, Damak hospital and Bardiya hospital
   2. Provincial stakeholders’ meeting conducted at Lumbini province in presence of Health Minister, Lumbini province, Secretary of MOHP, Lumbini province and other government officials and stakeholders
   3. Stakeholders’ meetings and collaboration with national bodies and international agencies
3. Infrastructure and capacity building:
   1. PEN-Plus clinic set-up and equipment purchased
   2. Human Resources hired at all PEN-Plus sites
   3. PEN-Plus clinical protocols and manuals for training healthcare workers being developed in coordination with NHTC
   4. MoU signed with Bheri hospital to strengthen the referral system and to facilitate mentorship and training
   5. PEN-Plus Clinical Protocol endorsement underway in MoHP
4. Monitoring and evaluation:
   1. Baseline assessment for readiness of all the sites completed
   2. Data being recorded electronically and EMR system setup in progress
   3. Data digitization process ongoing: Tripartite agreement signed at both sites with the respective software companies
5. Social Support:
   1. PEN-Plus clinic patients linked up with the national health insurance program.
   2. Payment of premium of the insurance for poor patient through PEN-Plus and coverage of their medical expenses until activation of insurance
   3. Steps for initiation of screening of patients for cervical cancer, breast cancer, sickle cell disease and thalassemia in the PEN-Plus site

Other updates on Nepal NCDI Poverty Commission activities:

• Publication of the report and finding dissemination of the study on “Assessment of non-communicable disease and injuries among children in selected tertiary level hospitals in Nepal” conducted in collaboration with the Nepal Health Research Council (NHRC) at the NHRC hall. 

Table: PEN-Plus clinic service status at Bardiya Hospital and Damak Hospital

Table: Updates on PEN-Plus clinic- Bardiya (Feb-June 2023)

Table: Updates on PEN-Plus clinic- Damak (Feb-June 2023)

Progress: Strengthening Primary Health Care and Referral System for Prevention and Management of NCDs including Neuro-developmental Disorders among Children and Adolescents in Nepal (C&A PEN-Plus)