MHA FPX 5028 Assessment 3 Best Practices Report

MHA FPX 5028 Assessment 3 Best Practices Report

Student Name

Capella University

MHA-FPX 5028 Comparative Models of Global Health Systems

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Date

Best Practices Report

Prior to 1980, Sickle Cell Disease (SCD) was considered a pediatric disease, with few children surviving their childhoods into adulthood. Approximately 30% of children born in the United States with sickle cell anemia (SCA) in 1970 died before their fifth birthday (Chaturvedi & DeBaun, 2016). Since then, advances in screening, treatment, and vaccination rates have resulted in significant improvements in pediatric survival rates and an increase in the median age at death to 42 for men and 48 for women in the United States (Chaturvedi & DeBaun, 2016). While high-income countries have seen improvements in mortality rates and quality of life indicators, developing nations have struggled to make significant progress in reducing mortality rates among their SCD populations (Thompson et al., 2023).

An area of promise to improve health outcomes and quality of life for SCD patients is the evaluation of care in Caribbean countries, which report higher rates of children born with the sickle cell trait than the United States, yet also have better health outcomes than those in Sub-Saharan Africa (Thompson et al., 2023). In 2020, the Pan American Health Organization (PAHO) launched a cooperative agreement with the Jamaican Ministry of Health to develop a comprehensive, integrated health system delivery network (IHSDN) across 11 primary health centers and three hospitals to manage chronic disease, focusing on electronic health records, workforce development, telehealth, health promotion and prevention activities, and medication management (Pan American Health Organization, n.d.).

This report evaluates the scalability of PAHO’s cooperative agreement with Jamaica to extend best practices from both the United States and Jamaica to low-income or under-resourced countries, particularly in Sub-Saharan Africa. The report reviews best practices and shared key performance indicators, assesses consumer and organizational implications, and examines potential provider management challenges in risk-based contracting versus fee-for-service payment strategies.

Performance Indicators

In 2000, the World Health Organization (WHO) published its first global health ranking report evaluating a variety of key performance indicators among its 191 member countries (Schutte et al., 2018). International health systems are evaluated across several domains, including life expectancy, maternal, infant, and child mortality, communicable and non-communicable disease mortality rates, infrastructure, and vaccination rates (Schutte et al., 2018). Due to challenges in data collection in countries without a robust health technology infrastructure, a common set of globally agreed-upon metrics for sickle cell disease is not available. However, in 2011, the first set of potential SCD quality indicators was published, with 41 identified metrics (Oyeku & Faro, 2017).

These metrics or key performance indicators (KPIs) are distributed across six domains: utilization, care maintenance, screening, acute care treatment, chronic care treatment, and transition from pediatric to adult care (Oyeku & Faro, 2017). Additional global measures include prevalence data and mortality rates across the life cycle (PAHO, 2023). Prevalence data must be matched with balancing measures as the life expectancy of people with SCD shifts and as adolescents move into adulthood and have children of their own, often transmitting the sickle cell trait to subsequent generations (Chaturvedi & DeBaun, 2016). Determining the true mortality rate of SCD is challenging, as co-morbidities and complications associated with SCD may not attribute the cause of death as SCD-associated (Thompson et al., 2023). Cause-specific deaths rank the global mortality rate of SCD at 40, yet, when all-cause death figures are included, the mortality burden for SCD rose to 12 in children aged five and younger (Thompson et al., 2023).

Table 1 indicates potential areas of key performance indicators that can be used by low-, middle-, and high-income countries to measure performance in areas such as accessibility, quality of care, affordability, and care delivery. The Centers for Medicare and Medicaid Services reports a case rate cost of $2.4 billion per year in hospitalizations and emergency department care alone, with estimates of approximately $44,000 per year per beneficiary (Centers for Medicare and Medicaid Services, 2023). According to the Institute for Health Metrics and Evaluation (n.d.), in 2019, Jamaica reported an average of $356 expenditures per person in health care. Additionally, Ramsay et al. (2021) report that for those paying out of pocket, 82% of private pay patients spend approximately $74 per month in US dollars.

Sickle Cell Disease Key Performance Indicators, United States and Jamaica

Future directions in performance indicators include readmission rates, access to pain management medications such as Dilaudid through patient-controlled analgesia pumps, access and efficacy of gene therapy and stem cell transplant, wait times during acute crises, and aspects of social determinants of health data, such as access to transportation to health care facilities or racial discrimination in pain management practices (Chaturvedi & DeBaun, 2016; Oyeku & Faro, 2017; Ramsay et al., 2021). Implementing and documenting the above KPIs is challenged by limited infrastructure and financial resources for even the current, fundamental indicators outlined in Table 1 (Shravya et al., 2023). Until then, early childhood mortality is as high as 90% in some parts of Sub-Saharan Africa (Chaturvedi & DeBaun, 2016).

Best Practices

High-income countries benefit from increased life expectancy in their residents with SCD, largely due to access to financial, clinical, technological, human, and pharmacological resources. Yet, limitations in access to resources can still result in improved outcomes, as evidenced by the Jamaica case study. Jamaica, overall, lacks many of the infrastructure components of the United States but reports a similar life expectancy for its sickle cell population. By implementing a low-cost universal newborn screening, universal vaccination for influenza and pneumonia, connection to a medical home for management (even without access to advanced specialty care available at the Sickle Cell Unit in Kingston or the University Hospital of the West Indies), and rigorous patient and family education on identifying triggers and spleen self-exams, they have managed to develop key best practices that can be translated globally (Serjeant et al., 2018).

In Jamaica, universal newborn screening results in a series of interventions that precipitate improved outcomes, including addition to a national disease registry (which the US does not have, even though it conducts universal newborn screening), connection to a hematology-trained care team, and Doppler cranial studies to assess for the likelihood of stroke later in life (Oyeku & Faro, 2017).

Before the widespread adoption of hydroxyurea as a prophylactic treatment to prevent acute chest syndrome and strokes in patients with SCD, the “gold standard” in high-income countries such as Canada, the United Kingdom, and the United States, was to conduct routine blood transfusions to maintain hemoglobin levels. Jamaica, which could not implement similar approaches due to cost and infection prevention concerns, limited the routine use of blood transfusions to prior to surgical procedures or during vaso-occlusive crises (Chaturvedi & DeBaun, 201

6). Hydroxyurea, implemented in a controlled, low-dose manner, showed promise in decreasing acute chest crises and strokes among Jamaican children (Serjeant et al., 2018). Although it remains largely a pharmacologic management tool for managing acute crises, rather than the standard of care in Jamaica, these are necessary steps to work towards implementation in low- and middle-income countries in Sub-Saharan Africa.

Shared Best Practices & Development Strategies

Internationally, developing countries have made significant strides in improving maternal, infant, and child health indicators and non-communicable disease mortality through the implementation of United Nations Sustainable Development Goals. The global prioritization of human rights and health equity has driven international coalitions, including PAHO and WHO, to create action plans that target the social determinants of health and leverage limited resources to improve health outcomes in low-income and under-resourced areas. As demonstrated in the Jamaica case study, national public health campaigns supported by both private and public financing to improve health education and literacy, establish medical homes, and promote access to vaccinations can shift the life expectancy of people with SCD. The following best practices and strategies are discussed in further detail below: universal newborn screening and vaccinations, patient and family education, a medical home model, workforce development, access to low-cost drugs, and the use of telehealth.

Universal Newborn Screening & Vaccinations

In 2021, WHO (n.d.) recommended universal newborn screening in countries with a high prevalence of sickle cell anemia. The US and Jamaica offer good case studies for the impact of implementing universal newborn screening policies and universal vaccination. In the US, state newborn screening policies allowed states with higher SCD rates to implement screening earlier, largely driven by community partnerships with local health organizations. Since then, this decentralized process has provided limited data on the true prevalence rates and mortality rates of SCD. However, the most recent national vital statistics reports an average of 1:13 African Americans with the sickle cell trait (Centers for Disease Control and Prevention, 2023). Nationally, health screening begins with heel sticks at birth to identify if a newborn has the trait or the disease, which is then paired with rigorous follow-up with primary and secondary care providers, and the child’s legal guardians, to determine the treatment plan. Hospitals providing birthing services report their findings to state agencies, who then report to the Centers for Disease Control and Prevention and the National Institutes of Health.

Jamaica offers a similar universal newborn screening program; however, as part of PAHO’s Integrated Health Systems approach, medical centers in Jamaica complete heel stick testing and have invested in mobile health teams that can follow up with new mothers and families in rural or remote areas to ensure compliance with follow-up appointments and subsequent testing and treatment plans. The Jamaica Sickle Cell Unit (n.d.) reports that as part of its collaboration with PAHO, its integrated health systems approach includes a health district model which coordinates care across a health network of 11 primary care clinics and three hospitals. As a part of its universal screening policy, the health district model has increased access to education for patients and families on splenic sequestration, spleen self-exams, screening for other co-morbidities (e.g., diabetes or high blood pressure), medication management, and when to seek emergency medical attention.

The US and Jamaica also offer strong case studies on the impact of universal vaccination policies. In the US, universal vaccination against childhood infectious diseases is largely a state-level policy, which is federally mandated for children to attend state schools. As part of this mandate, vaccination records are linked to children’s electronic health records and monitored by their primary care physician. Similarly, in Jamaica, universal vaccinations are part of a comprehensive immunization campaign that is monitored by public health nurses as part of the PAHO IHSDN.

Patient and Family Education

Patient and family education are paramount to improving health outcomes for people with SCD. Best practices in patient and family education in the US and Jamaica have demonstrated improvements in the age of diagnosis, decreased mortality in children, and increased follow-up with care teams (Chaturvedi & DeBaun, 2016; Serjeant et al., 2018). Patient education begins with newborn screening and follow-up appointments with the family. A best practice in patient education in Jamaica is the use of mobile health teams that provide education to new mothers and families about the risks of SCD, medication management, and splenic sequestration (Jamaica Sickle Cell Unit, n.d.). This approach has demonstrated significant improvements in patient follow-up and compliance with treatment plans.

In the US, patient education includes information about the importance of regular health screenings, medication management, and the risks associated with SCD. Educational materials are often provided in multiple languages to ensure accessibility to diverse populations. Additionally, patient education programs in the US often include support groups and community-based organizations that provide resources and support for individuals and families affected by SCD (Chaturvedi & DeBaun, 2016).

Medical Home Model

The medical home model is a patient-centered approach to care that coordinates treatment across a network of healthcare providers to ensure comprehensive and continuous care. This model has been shown to improve health outcomes and reduce healthcare costs for patients with chronic conditions, including SCD. In the US, the medical home model is often implemented through primary care practices that coordinate care with specialists, such as hematologists, and provide patient education and support services (Chaturvedi & DeBaun, 2016).

In Jamaica, the medical home model is part of the PAHO IHSDN, which coordinates care across a network of primary care clinics and hospitals. This approach ensures that patients have access to a continuum of care, from primary care to specialty services, and that care is coordinated across multiple providers. The medical home model in Jamaica also includes community health workers who provide education and support to patients and families in their homes (Jamaica Sickle Cell Unit, n.d.).

Workforce Development

Workforce development is critical to ensuring that healthcare providers have the skills and knowledge to effectively manage SCD. Best practices in workforce development include training programs for healthcare providers, continuing education opportunities, and the development of specialized care teams. In the US, workforce development programs often include training for primary care providers, hematologists, and other specialists on the latest evidence-based practices for managing SCD (Chaturvedi & DeBaun, 2016).

In Jamaica, workforce development is part of the PAHO IHSDN, which includes training programs for healthcare providers on the management of chronic diseases, including SCD. This approach ensures that healthcare providers have the skills and knowledge to provide high-quality care to patients with SCD (Jamaica Sickle Cell Unit, n.d.).

Access to Low-Cost Drugs

Access to low-cost drugs is critical to improving health outcomes for patients with SCD. Best practices in providing access to low-cost drugs include the use of generic medications, bulk purchasing programs, and government subsidies. In the US, access to low-cost drugs is often facilitated through government programs, such as Medicaid and Medicare, as well as private insurance plans (Chaturvedi & DeBaun, 2016).

In Jamaica, access to low-cost drugs is part of the PAHO IHSDN, which includes bulk purchasing programs and government subsidies to ensure that patients have access to affordable medications. This approach has demonstrated significant improvements in medication adherence and health outcomes for patients with SCD (Jamaica Sickle Cell Unit, n.d.).

Telehealth

Telehealth is a promising approach to improving access to care for patients with SCD, particularly in rural and remote areas. Best practices in telehealth include the use of telemedicine platforms to provide remote consultations, remote monitoring of patient health, and the use of mobile health teams to provide education and support to patients in their homes. In the US, telehealth has been increasingly used to provide remote consultations and follow-up care for patients with SCD, particularly during the COVID-19 pandemic (Chaturvedi & DeBaun, 2016).

In Jamaica, telehealth is part of the PAHO IHSDN, which includes the use of mobile health teams to provide remote consultations and support to patients in rural and remote areas. This approach has demonstrated significant improvements in access to care and health outcomes for patients with SCD (Jamaica Sickle Cell Unit, n.d.).

Conclusion

The PAHO cooperative agreement with Jamaica offers a promising model for improving health outcomes for patients with SCD in low- and middle-income countries. By implementing best practices in universal newborn screening and vaccinations, patient and family education, the medical home model, workforce development, access to low-cost drugs, and telehealth, countries can improve the quality of care and reduce mortality rates for patients with SCD. These best practices can be adapted and scaled to meet the needs of low-income or under-resourced countries, particularly in Sub-Saharan Africa, to improve health outcomes and quality of life for patients with SCD.

References

Adamkiewicz, T. V., Sarnaik, S., Buchanan, G. R., Pegelow, C. H., Fallon, R., Chu, J. Y., & Wang, W. C. (2023). Pneumococcal vaccination in patients with sickle cell disease. The Journal of Pediatrics, 152(2), 210-213.

Chaturvedi, S., & DeBaun, M. R. (2016). Evolution of sickle cell disease from a life-threatening disease of children to a chronic disease of adults: The last 40 years. American Journal of Hematology, 91(1), 5-14.

Centers for Disease Control and Prevention. (2023). Sickle cell disease (SCD): Data & statistics. https://www.cdc.gov/ncbddd/sicklecell/data.html

Centers for Medicare and Medicaid Services. (2023). Sickle cell disease. https://www.cms.gov/newsroom/fact-sheets/sickle-cell-disease

Grady, S. C.,& Henry, A. B. (2023). Sickle cell disease: The need for a comprehensive public health agenda. Public Health Reports, 132(3), 266-274.

MHA FPX 5028 Assessment 3 Best Practices Report

Jamaica Sickle Cell Unit. (n.d.). Sickle cell unit. https://www.sicklecellunit.com

Serjeant, G. R., Hambleton, I. R., & Fisher, C. A. (2018). The Jamaican cohort study of sickle-cell disease: Overview of neonatal screening, clinical events, and outcomes. Public Health Reports, 113(3), 6-10.

World Health Organization. (n.d.). Sickle cell disease. https://www.who.int/news-room/fact-sheets/detail/sickle-cell-disease