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Community Health Workers as Support for Sickle Cell Care

      Community health workers are increasingly recognized as useful for improving health care and health outcomes for a variety of chronic conditions. Community health workers can provide social support, navigation of health systems and resources, and lay counseling. Social and cultural alignment of community health workers with the population they serve is an important aspect of community health worker intervention. Although community health worker interventions have been shown to improve patient-centered outcomes in underserved communities, these interventions have not been evaluated with sickle cell disease. Evidence from other disease areas suggests that community health worker intervention also would be effective for these patients. Sickle cell disease is complex, with a range of barriers to multifaceted care needs at the individual, family/friend, clinical organization, and community levels. Care delivery is complicated by disparities in health care: access, delivery, services, and cultural mismatches between providers and families. Current practices inadequately address or provide incomplete control of symptoms, especially pain, resulting in decreased quality of life and high medical expense. The authors propose that care and care outcomes for people with sickle cell disease could be improved through community health worker case management, social support, and health system navigation. This paper outlines implementation strategies in current use to test community health workers for sickle cell disease management in a variety of settings. National medical and advocacy efforts to develop the community health workforce for sickle cell disease management may enhance the progress and development of “best practices” for this area of community-based care.

      Introduction

      Sickle cell disease (SCD) is a set of genetic hemoglobinopathies characterized by hemolytic anemia, severe pain, and multi-organ compromise. As a result of dramatic improvements in care and longevity,
      • Powars D.R.
      • Chan L.S.
      • Hiti A.
      • Ramicone E.
      • Johnson C.
      A 4-decade observational study of 1,056 patients.
      • Quinn C.T.
      • Rogers Z.R.
      • McCavit T.L.
      • Buchanan G.R.
      Improved survival of children and adolescents with sickle cell disease.
      • Hassell K.L.
      • Grosse R.
      Population estimates of sickle cell disease in the U.S.
      SCD increasingly has become a lifespan disease, from childhood to adulthood.
      • Brousseau D.C.
      • Panepinto J.A.
      • Nimmer M.
      • Hoffmann R.G.
      The number of people with sickle cell disease in the United States: national and state estimates.
      However, approaches to managing SCD encounter problems at multiple levels that challenge both the patient and healthcare system. The purpose of this paper is to summarize the potential for community health workers (CHW) in the care of people with SCD, offer practical guidance for the development of new CHW programs for SCD through current examples, and highlight evaluation and policy opportunities.

      Sickle Cell Care Highlights Gaps in a Socioecologic System

      Though considered a rare disease by U.S. standards, SCD has come to be regarded a significant target for U.S. healthcare reform efforts, such as Healthy People 2020. Much recent attention to SCD has arisen from the high morbidity, healthcare utilization, and cost associated with SCD, both for individuals and healthcare systems.
      • Shankar S.M.
      • Arbogast P.G.
      • Mitchel E.
      • Cooper W.O.
      • Wang W.C.
      • Griffin M.R.
      Medical care utilization and mortality in sickle cell disease: a population-based study.
      • Lanzkron S.
      • Haywood Jr, C.
      • Segal J.B.
      • Dover G.J.
      Hospitalization rates and costs of care of patients with sickle-cell anemia in the state of Maryland in the era of hydroxyurea.
      • Kauf T.L.
      • Coates T.D.
      • Huazhi L.
      • Mody-Patel N.
      • Hartzema A.G.
      The cost of health care for children and adults with sickle cell disease.
      • Mvundura M.
      • Amendah D.
      • Kavanagh P.L.
      • Sprinz P.G.
      • Grosse S.D.
      Health care utilization and expenditures for privately and publicly insured children with sickle cell disease in the United States.
      • Raphael J.L.
      • Dietrich C.L.
      • Whitmire D.
      • Mahoney D.H.
      • Mueller B.U.
      • Giardino A.P.
      Healthcare utilization and expenditures for low income children with sickle cell disease.
      • Brousseau D.C.
      • Owens P.L.
      • Mosso A.L.
      • Panepinto J.A.
      • Steiner C.A.
      Acute care utilization and rehospitalizations for sickle cell disease.
      • Lanzkron S.
      • Carroll C.P.
      • Haywood Jr, C.
      The burden of emergency department use for sickle-cell disease: an analysis of the national emergency department sample database.
      • Yusuf H.R.
      • Lloyd-Puryear M.A.
      • Grant A.M.
      • Parker C.S.
      • Creary M.S.
      • Atrash H.K.
      Sickle cell disease: the need for a public health agenda.
      • Raphael J.L.
      • Mei M.
      • Mueller B.U.
      • Giordano T.
      High resource hospitalizations among children with vaso-occlusive crises in sickle cell disease.
      • Anderson N.
      • Bellot J.
      • Senu-Oke O.
      • Ballas S.K.
      Characteristics of acute care utilization of a Delaware adult sickle cell disease patient population.
      • Carey P.J.
      Addressing the global health burden of sickle cell disease.
      Although SCD therapies have led to improved life expectancy, many outcome goals remain unmet, not only because of the biological burden of end-organ failure or acute complications but also because of the complex burden of SCD patients’ interaction with the socioecologic system.
      • Haywood Jr, C.
      • Lanzkron S.
      • Bediako S.
      • et al.
      Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease.
      • Zempsky W.T.
      • Loiselle K.A.
      • McKay K.
      • Lee B.H.
      • Hagstrom J.N.
      • Schechter N.L.
      Do children with sickle cell disease receive disparate care for pain in the emergency department?.
      • Todd K.H.
      • Green C.
      • Bonham Jr, V.L.
      • Haywood Jr, C.
      • Ivy E.
      Sickle cell disease related pain: crisis and conflict.
      This system emphasizes the inter-relationship among individual, interpersonal, organizational, community, and public health factors in relation to health behavior change.
      • Glanz K.
      • Bishop D.B.
      The role of behavioral science theory in development and implementation of public health interventions.
      Like other chronic conditions, SCD is influenced at all of these levels by varying factors, and by interactions between these factors. Interaction between disease manifestations and health behavior is only one part of the challenges to the individual within the socioecologic system.
      Regardless of management or adherence, pain and other disease manifestations can be acute or chronic, incapacitating, and unpredictable.
      • McClish D.K.
      • Penberthy L.T.
      • Bovbjerg V.E.
      • et al.
      Health related quality of life in sickle cell patients: the PiSCES project.
      • Sogutlu A.
      • Levenson J.L.
      • McClish D.K.
      • Rosef S.D.
      • Smith W.R.
      Somatic symptom burden in adults with sickle cell disease predicts pain, depression, anxiety, health care utilization, and quality of life: the PiSCES project.
      • Smith W.R.
      • Penberthy L.T.
      • Bovbjerg V.E.
      • et al.
      Daily assessment of pain in adults with sickle cell disease.
      • Raphael J.L.
      • Oyeku S.O.
      Sickle cell disease pain management and the medical home.
      Thus, patients and caregivers must learn disease self-management, how to access healthcare systems, and how to make healthcare decisions. Unfortunately, mismatches between the needs of the SCD population are often entwined with health disparities associated with race/ethnicity in the U.S.,
      • Haywood Jr, C.
      • Lanzkron S.
      • Bediako S.
      • et al.
      Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease.
      • Zempsky W.T.
      • Loiselle K.A.
      • McKay K.
      • Lee B.H.
      • Hagstrom J.N.
      • Schechter N.L.
      Do children with sickle cell disease receive disparate care for pain in the emergency department?.
      • Todd K.H.
      • Green C.
      • Bonham Jr, V.L.
      • Haywood Jr, C.
      • Ivy E.
      Sickle cell disease related pain: crisis and conflict.
      including those at primary
      • Whiteman L.N.
      • Haywood Jr, C.
      • Lanzkron S.
      • Strouse J.J.
      • Feldman L.
      • Stewart R.W.
      Primary care providers’ comfort levels in caring for patients with sickle cell disease.
      and specialty care levels.
      • Davis H.
      • Schoendorf K.C.
      • Gergen P.J.
      • Moore Jr, R.M.
      National trends in the mortality of children with sickle cell: 1962 to 1998.
      Contrary to best practices for care of chronic health conditions,
      • Boyd C.M.
      • Darer J.
      • Boult C.
      • Fried L.P.
      • Boult L.
      • Wu A.W.
      Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases: implications for pay for performance.
      only a fraction of Americans with SCD receive regular medical care for scheduled preventative care and evaluation. SCD care is often delivered in resource-intense medical settings, such as emergency departments and in-patient hospital stays, especially after childhood.
      • Dampier C.
      • Lieff S.
      • LeBeau P.
      • et al.
      Health-related quality of life in children with sickle cell disease: a report from the Comprehensive Sickle Cell Centers Clinical Trial Consortium.
      • Haywood Jr, C.
      • Diener-West M.
      • Strouse J.
      • et al.
      Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease.
      Even hematologists might not prescribe hydroxyurea,
      • Zumberg M.S.
      • Reddy S.T.
      • Boyette R.L.
      • Schwartz R.J.
      • Konrad T.R.
      • Lottenberg R.H.U.
      therapy for sickle cell disease in community-based practices: a survey of Florida and North Carolina.
      • Ware R.E.
      • Aygun B.
      Advances in the use of hydroxyurea.
      • Rogers Z.R.
      • Wang W.C.
      • Luo Z.
      • et al.
      Biomarkers of splenic function in infants with sickle cell anemia: baseline data from the BABY-HUG trial.
      the only U.S. Food and Drug Administration−approved disease-modifying drug for SCD.
      • Ware R.E.
      • Aygun B.
      Advances in the use of hydroxyurea.
      • Kinney T.R.
      • Helms R.W.
      • O’Branski E.E.
      Safety of hydroxyurea in children with sickle cell anemia: the HUG-KIDS study, a phase I/II trial.
      At the community level, impediments to helping people with SCD maximize function at school and work contribute to high unemployment and disability.
      • Swanson M.E.
      • Grosse S.D.
      • Kulkarni R.
      Disability among individuals with sickle cell disease: literature review from a public health perspective.
      • Dyson S.M.
      • Atkin K.
      • Culley L.A.
      • Dyson S.E.
      • Evans H.
      Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school.
      Social isolation may be compounded by cognitive impairment and stigma of SCD.
      • Weisberg D.
      • Balf-Soran G.
      • Becker W.
      • Brown S.E.
      • Sledge W.
      “I’m talking about pain”: sickle cell disease patients with extremely high hospital use.
      • Wilson B.H.
      • Nelson J.
      Sickle cell disease pain management in adolescents: a literature review.
      In total, these multilevel issues lead to high variability in patient satisfaction, quality of life, and adherence to prescribed medical regimens and appointments. These multilevel barriers should be addressed to improve care and outcomes for people with SCD.
      • Yawn B.P.
      • Buchanan G.R.
      • Afenyi-Annan A.N.
      • et al.
      Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members.

      Community Health Workers

      Intervention by CHWs can target barriers to improved health and well-being for people with SCD on multiple levels. CHW programs aim to address the needs of underserved populations by providing trained community members as educators, supporters, and advocates who can effectively reach their neighbors.
      • Hassell K.L.
      • Grosse R.
      Population estimates of sickle cell disease in the U.S.
      • Brousseau D.C.
      • Panepinto J.A.
      • Nimmer M.
      • Hoffmann R.G.
      The number of people with sickle cell disease in the United States: national and state estimates.
      • Shankar S.M.
      • Arbogast P.G.
      • Mitchel E.
      • Cooper W.O.
      • Wang W.C.
      • Griffin M.R.
      Medical care utilization and mortality in sickle cell disease: a population-based study.
      • Lanzkron S.
      • Haywood Jr, C.
      • Segal J.B.
      • Dover G.J.
      Hospitalization rates and costs of care of patients with sickle-cell anemia in the state of Maryland in the era of hydroxyurea.
      • Kauf T.L.
      • Coates T.D.
      • Huazhi L.
      • Mody-Patel N.
      • Hartzema A.G.
      The cost of health care for children and adults with sickle cell disease.
      • Mvundura M.
      • Amendah D.
      • Kavanagh P.L.
      • Sprinz P.G.
      • Grosse S.D.
      Health care utilization and expenditures for privately and publicly insured children with sickle cell disease in the United States.
      • Raphael J.L.
      • Dietrich C.L.
      • Whitmire D.
      • Mahoney D.H.
      • Mueller B.U.
      • Giardino A.P.
      Healthcare utilization and expenditures for low income children with sickle cell disease.
      • Brousseau D.C.
      • Owens P.L.
      • Mosso A.L.
      • Panepinto J.A.
      • Steiner C.A.
      Acute care utilization and rehospitalizations for sickle cell disease.
      • Lanzkron S.
      • Carroll C.P.
      • Haywood Jr, C.
      The burden of emergency department use for sickle-cell disease: an analysis of the national emergency department sample database.
      • Yusuf H.R.
      • Lloyd-Puryear M.A.
      • Grant A.M.
      • Parker C.S.
      • Creary M.S.
      • Atrash H.K.
      Sickle cell disease: the need for a public health agenda.
      • Raphael J.L.
      • Mei M.
      • Mueller B.U.
      • Giordano T.
      High resource hospitalizations among children with vaso-occlusive crises in sickle cell disease.
      • Anderson N.
      • Bellot J.
      • Senu-Oke O.
      • Ballas S.K.
      Characteristics of acute care utilization of a Delaware adult sickle cell disease patient population.
      • Carey P.J.
      Addressing the global health burden of sickle cell disease.
      • Haywood Jr, C.
      • Lanzkron S.
      • Bediako S.
      • et al.
      Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease.
      • Zempsky W.T.
      • Loiselle K.A.
      • McKay K.
      • Lee B.H.
      • Hagstrom J.N.
      • Schechter N.L.
      Do children with sickle cell disease receive disparate care for pain in the emergency department?.
      • Todd K.H.
      • Green C.
      • Bonham Jr, V.L.
      • Haywood Jr, C.
      • Ivy E.
      Sickle cell disease related pain: crisis and conflict.
      • Glanz K.
      • Bishop D.B.
      The role of behavioral science theory in development and implementation of public health interventions.
      • McClish D.K.
      • Penberthy L.T.
      • Bovbjerg V.E.
      • et al.
      Health related quality of life in sickle cell patients: the PiSCES project.
      • Sogutlu A.
      • Levenson J.L.
      • McClish D.K.
      • Rosef S.D.
      • Smith W.R.
      Somatic symptom burden in adults with sickle cell disease predicts pain, depression, anxiety, health care utilization, and quality of life: the PiSCES project.
      • Smith W.R.
      • Penberthy L.T.
      • Bovbjerg V.E.
      • et al.
      Daily assessment of pain in adults with sickle cell disease.
      • Raphael J.L.
      • Oyeku S.O.
      Sickle cell disease pain management and the medical home.
      • Whiteman L.N.
      • Haywood Jr, C.
      • Lanzkron S.
      • Strouse J.J.
      • Feldman L.
      • Stewart R.W.
      Primary care providers’ comfort levels in caring for patients with sickle cell disease.
      • Davis H.
      • Schoendorf K.C.
      • Gergen P.J.
      • Moore Jr, R.M.
      National trends in the mortality of children with sickle cell: 1962 to 1998.
      • Boyd C.M.
      • Darer J.
      • Boult C.
      • Fried L.P.
      • Boult L.
      • Wu A.W.
      Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases: implications for pay for performance.
      • Dampier C.
      • Lieff S.
      • LeBeau P.
      • et al.
      Health-related quality of life in children with sickle cell disease: a report from the Comprehensive Sickle Cell Centers Clinical Trial Consortium.
      • Haywood Jr, C.
      • Diener-West M.
      • Strouse J.
      • et al.
      Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease.
      • Zumberg M.S.
      • Reddy S.T.
      • Boyette R.L.
      • Schwartz R.J.
      • Konrad T.R.
      • Lottenberg R.H.U.
      therapy for sickle cell disease in community-based practices: a survey of Florida and North Carolina.
      • Ware R.E.
      • Aygun B.
      Advances in the use of hydroxyurea.
      • Rogers Z.R.
      • Wang W.C.
      • Luo Z.
      • et al.
      Biomarkers of splenic function in infants with sickle cell anemia: baseline data from the BABY-HUG trial.
      • Kinney T.R.
      • Helms R.W.
      • O’Branski E.E.
      Safety of hydroxyurea in children with sickle cell anemia: the HUG-KIDS study, a phase I/II trial.
      • Swanson M.E.
      • Grosse S.D.
      • Kulkarni R.
      Disability among individuals with sickle cell disease: literature review from a public health perspective.
      • Dyson S.M.
      • Atkin K.
      • Culley L.A.
      • Dyson S.E.
      • Evans H.
      Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school.
      • Weisberg D.
      • Balf-Soran G.
      • Becker W.
      • Brown S.E.
      • Sledge W.
      “I’m talking about pain”: sickle cell disease patients with extremely high hospital use.
      • Wilson B.H.
      • Nelson J.
      Sickle cell disease pain management in adolescents: a literature review.
      • Yawn B.P.
      • Buchanan G.R.
      • Afenyi-Annan A.N.
      • et al.
      Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members.
      U.S. Health Resources and Services Administration
      Bureau of Health Professions. Community Health Workers National Workforce Study.
      • Swider S.M.
      • Martin M.
      • Lynas C.
      • Rothschild S.
      Project MATCH: training for a promotora intervention.
      • Rosenthal E.L.
      • Wiggins N.
      • Brownstein J.N.
      • et al.
      The Final Report of the National Community Health Advisor Study: Weaving The Future.
      In health care, CHWs are non-clinicians who work with medically and socially complex individuals from underserved communities to help bridge to medical services to improve patient healthcare engagement, self-management, treatment plan adherence, and health outcomes.
      • Viswanathan M.
      • Kraschnewski J.
      • Nishikawa B.
      • et al.
      Outcomes of community health worker interventions.
      CHWs are called varying terms, including lay health worker, outreach worker, health advocate, promotora de salud, patient navigator, and guide. Such terms convey the concept that CHWs can effectively connect to multiple levels of a system. CHWs often share responsibility for patient education, support, and social services with clinic staff, and they have been successful in engaging and sustaining comprehensive disease care.
      U.S. Health Resources and Services Administration
      Bureau of Health Professions. Community Health Workers National Workforce Study.
      • Swider S.M.
      • Martin M.
      • Lynas C.
      • Rothschild S.
      Project MATCH: training for a promotora intervention.
      • Rosenthal E.L.
      • Wiggins N.
      • Brownstein J.N.
      • et al.
      The Final Report of the National Community Health Advisor Study: Weaving The Future.
      Seven core roles in improving patients’ health can be served by CHWs, who provide:
      • 1
        cultural mediation;
      • 2
        informal counseling and social support;
      • 3
        culturally appropriate health education;
      • 4
        advocacy for individual and community needs;
      • 5
        assurance that people receive needed medical and social services for which they are entitled;
      • 6
        direct social and supportive services; and
      • 7
        support for building individual and community capacity.
        • Rosenthal E.L.
        • Wiggins N.
        • Brownstein J.N.
        • et al.
        The Final Report of the National Community Health Advisor Study: Weaving The Future.
      The contributions these core CHW roles make to behavior change are supported by social cognitive theory.
      • Israel B.A.
      Social networks and social support: implications for natural helper and community level interventions.
      • Smedley B.D.
      • Stith A.Y.
      • Nelson A.R.
      IOM. Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Unequal Treatment: Confronting Racial And Ethnic Disparities In Health Care.
      This construct states that behavior is shaped and maintained by consequences, particularly by immediate feedback from both objective sources (such as blood results) and an individual’s social network (beliefs and traditions of family and friends).
      • Bandura A.
      Self-efficacy: toward a unifying theory of behavioral change.
      CHWs could also help patients move between stages of the transtheoretical model of behavior change for self-care and chronic disease self-management. In this model, processes for adoption of positive behaviors are linked to enhanced decision making and self-efficacy.
      • Nelson K.A.
      • Highstein G.
      • Garbutt J.
      • Trinkaus K.
      • Smith S.R.
      • Strunk R.C.
      Factors associated with attaining coaching goals during an intervention to improve child asthma care.
      • Williams L.B.
      • Franklin B.
      • Evans M.B.
      • Jackson C.
      • Hill A.
      • Minor M.
      Turn the beat around: a stroke prevention program for African-American churches.
      Examples of the multilevel functions of CHWs can include the level of coaching the individual with SCD in adaptive behavior.
      • Jenerette C.M.
      • Brewer C.A.
      • Edwards L.J.
      • Mishel M.H.
      • Gil K.M.
      An intervention to decrease stigma in young adults with sickle cell disease.
      At the healthcare system level, CHWs can be integrated into the clinical setting as patient navigators to assist the patient with access to medical care. CHW integration with the medical team is highly effective in adult diabetes
      • Philis-Tsimikas A.
      • Walker C.
      • Rivard L.
      • et al.
      Improvement in diabetes care of underinsured patients enrolled in project dulce: a community-based, culturally appropriate, nurse case management and peer education diabetes care model.
      • Babamoto K.S.
      • Sey K.A.
      • Camilleri A.J.
      • Karlan V.J.
      • Catalasan J.
      • Morisky D.E.
      Improving diabetes care and health measures among hispanics using community health workers: results from a randomized controlled trial.
      • Otero-Sabogal R.
      • Arretz D.
      • Siebold S.
      • et al.
      Physician-community health worker partnering to support diabetes self-management in primary care.
      ; pairing CHWs with nurses improves outcomes more so than nurses working alone.
      • Gibbons M.C.
      • Tyus N.C.
      Systematic review of U.S.-based randomized controlled trials using community health workers.
      On the community level, CHWs can engage, support, and advocate for families through schools and social service agencies.
      The evidence for CHWs to impact these multiple levels in other disease areas is strong, as reflected in several systematic reviews.
      • Lewin S.
      • Munabi-Babigumira S.
      • Glenton C.
      • et al.
      Lay health workers in primary and community health care for maternal and child health and the management of infectious diseases.
      • Rhodes S.D.
      • Foley K.L.
      • Zometa C.S.
      • Bloom F.R.
      Lay health advisor interventions among Hispanics/Latinos: a qualitative systematic review.
      • Palmas W.
      • March D.
      • Darakjy S.
      • et al.
      Community health worker interventions to improve glycemic control in people with diabetes: a systematic review and meta-analysis.
      CHW programs have existed for more than a century in developing countries for infectious disease management
      • Perry H.B.
      • Zulliger R.
      • Rogers M.M.
      Community health workers in low-, middle-, and high-income countries: an overview of their history, recent evolution, and current effectiveness.
      and maternal child health.
      • Raphael J.L.
      • Rueda A.
      • Lion K.C.
      • Giordano T.P.
      The role of lay health workers in pediatric chronic disease: a systematic review.
      • Flores F.P.
      • Umenai T.
      • Wakai S.
      Should community-managed drug stores be phased out?.
      • Adirim T.
      • Supplee L.
      Overview of the Federal home visiting program.
      Among the adult chronic diseases, CHWs have been shown to improve health outcomes for asthma, hypertension, heart disease, diabetes, and HIV, as well as improve disease self-management, disease prevention, pregnancy outcomes, and healthcare utilization.
      • Gibbons M.C.
      • Tyus N.C.
      Systematic review of U.S.-based randomized controlled trials using community health workers.
      • Rosenthal E.L.
      • Brownstein J.N.
      • Rush C.H.
      • et al.
      Community health workers: part of the solution.
      • Behforouz H.L.
      • Farmer P.E.
      • Mukherjee J.S.
      From directly observed therapy to accompagnateurs: enhancing AIDS treatment outcomes in Haiti and in Boston.
      • Cooper L.A.
      • Hill M.N.
      • Powe N.R.
      Designing and evaluating interventions to eliminate racial and ethnic disparities in health care.
      • Gary T.L.
      • Bone L.R.
      • Hill M.N.
      • et al.
      Randomized controlled trial of the effects of nurse case manager and community health worker interventions on risk factors for diabetes-related complications in urban African Americans.
      For children with chronic disease, evidence of the benefit of CHWs is particularly strong for asthma.
      • Smedley B.D.
      • Stith A.Y.
      • Nelson A.R.
      IOM. Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Unequal Treatment: Confronting Racial And Ethnic Disparities In Health Care.
      American Public Health Association
      APHA Governing Council Resolution 2001−15. Recognition and Support for Community Health Workers’ Contributions to Meeting Our Nation’s Health Care Needs.
      • Norris S.L.
      • Chowdhury F.M.
      • Van Le K.
      • et al.
      Effectiveness of community health workers in the care of persons with diabetes.
      • Findley S.
      • Rosenthal M.
      • Bryant-Stephens T.
      • et al.
      Community-based care coordination: practical applications for childhood asthma.
      In addition, studies indicate that CHW interventions are cost effective, especially when taking a longitudinal view of the return on investment.
      • Rhodes S.D.
      • Foley K.L.
      • Zometa C.S.
      • Bloom F.R.
      Lay health advisor interventions among Hispanics/Latinos: a qualitative systematic review.
      • Lewin S.A.
      • Dick J.
      • Pond P.
      • et al.
      Lay health workers in primary and community health care.
      • Krieger J.W.
      • Takaro T.K.
      • Song L.
      • Weaver M.
      The Seattle-King County Healthy Homes Project: a randomized, controlled trial of a community health worker intervention to decrease exposure to indoor asthma triggers.
      • Walton A.
      • Calvo Y.
      • Flores M.
      • Navarrete L.
      • Ruiz L.
      Promotoras: observations and implications for increasing cervical cancer prevention and screening in the Hispanic community.
      • Olds D.L.
      • Henderson Jr, C.R.
      • Phelps C.
      • Kitzman H.
      • Hanks C.
      Effect of prenatal and infancy nurse home visitation on government spending.
      • Karoly L.
      • Kilburn M.R.
      • Cannon J.S.
      Early Childhood Interventions: Proven Results, Future Promise.
      CHW interventions have specifically been shown to lower hospital readmissions.
      • Burns M.E.
      • Galbraith A.A.
      • Ross-Degnan D.
      • Balaban R.B.
      Feasibility and evaluation of a pilot community health worker intervention to reduce hospital readmissions.
      • Findley S.
      • Matos S.
      • Hicks A.
      • Chang J.
      • Reich D.
      Community health worker integration into the health care team accomplishes the triple aim in a patient-centered medical home: a Bronx tale.
      Because of the critical role CHWs play in health and the emerging needs of the workforce, the American Public Health Association established a specific section on CHWs.

      American Public Health Association (APHA). Community Health Workers Section of the American Public Health Association. www.apha.org/apha-communities/member-sections/community-health-workers. Published 2015. Accessed November 22, 2015.

      The diversity of CHW roles and terminology shown in the SCD projects listed in Table 1 is similar to the published literature on CHWs in other fields. Many CHWs have a role that can be called “patient navigator,” whereas other CHWs focus on home visiting and improving access to community resources. Generally, CHWs are viewed as non-clinical professionals, as opposed to a healthcare professional like a nurse, social worker, or physician providing home visits or community outreach. CHWs may also participate in tasks such as coordinating medical care and providing assistance for diverse needs such as health insurance enrollment, immigration, or housing. These types of efforts serve to improve not just the medical but also the social health of the individual.
      Table 1Current Programs of Community Health Worker Efforts in Sickle Cell Disease as of 2015
      ProgramsRegion, target population, estimated no. of patientsSource of CHW, program outlineNotes about training CHW
      PI, project name, goal(s)
      • Wally Smith
      • Shirley Johnson
      • Project: Enhancing Use of Hydroxyurea in SCD Through Patient Navigators.
      • Goals: Improve the percentage of adults who are in SCD specialty care and increase hydroxyurea compliance (NIH R18 funded)
      Richmond (urban) and Tidewater area (rural) Virginia adults >15 years old, n=270Utilize patient navigators (PNs) to overcome patient access barriers to SCD care and to test the efficacy of PNs for overcoming barriers to acceptance of and adherence with hydroxyurea therapy
      • Didactic, experiential
      • CHW group meetings
      • Nancy Green
      • Arlene Smaldone
      • Project: Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment: HABIT.
      • Goals: Hydroxyurea adherence; Utilization of acute care; improved quality of life (NIH R21 funded)
      • New York City (urban)
      • Children 10−18 years old, n=30 dyads
      • CHWs have scheduled interactions with subjects at home, by telephone, or at a partner community-based organization
      • CHWs send customized text message reminders for taking hydroxyurea to each youth and parent
      Didactic, experiential CHW group meetings, built upon a very strong asthma CHW program in Manhattan
      • Ben van Voorhees
      • Molly Martin
      • Lewis Hsu,
      • CHECK program
      • Goals: Reduce acute hospital visits
      • Chicago region (urban)
      • Child, AYA, n>500
      Experienced CHW from other programs, such as asthmaBuilds on basic training for CHW and adds specific training didactic modules for SCD, followed by experiential training in sickle cell center
      • Jerry Krishnan
      • PArTNER program
      • Goals: Reduce readmissions to hospital within 30 days, increase social support, improve self-efficacy, and reduce anxiety
      Cook County, Illinois (urban), 18 years old and up, n>85 SCD
      • Experienced CHW from asthma programs
      • Assist transition from hospital admit to outpatient care for SCD, asthma, and other chronic diseases
      • Visit patient in hospital and at home, plus phone follow-up
      Training on assessing barriers to care, confidentiality, community resources
      • Rosalyn Stewart, J.J. Strouse, iHOMES,
      • Goals: improve health and outcomes through improved adherence to ambulatory care plans, improve access to care, and improve utilization of community resources to overcome hindrances to care
      Baltimore metropolitan area, adults, n=104CHWs from the community as employees of Johns Hopkins University, worked with patients to improve adherence to care plans and overcome social barriers to careStandard training program for CHW at Johns Hopkins with addition of specific sickle cell content
      • Gladys Robinson
      • Sickle Cell of Piedmont
      • Goal: Integrate primary care and specialty care
      North Carolina federally qualified health centerCHW cross-trained for several chronic diseasesPromote health care for SCD, HIV/AIDS, diabetes, other chronic conditions
      • TaLana Hughes
      • Sickle Cell Disease Association of Illinois
      • Goal: Coordinated care
      Chicago and Peoria, IL (urban, suburban, rural)
      • Home visits for families who missed follow-up for newborn screening diagnosis of SCD
      • They also serve as parent-to-parent advisors on resources
      • Follow-up in 1 year to check knowledge and behavior
      SCD care for infant
      • Trevor Thompson
      • Sickle Cell Foundation of Tennessee. (SCFT)
      • Goal: Improve adherence to medical care
      Tennessee
      • Community-based group
      • Transportation assistance for clients/patients to medical, dental, or mental health appointments related to their SCD
      Patient navigator trained by SCFT
      • Stanley Simpkins
      • Sickle Cell Disease Association of America (SCDAA), Philadelphia/Delaware Valley
      • Goal: Improve access to care
      Philadelphia, PA (urban and suburban)
      • Community-based group. Transportation assistance for pediatric families
      • Locate children who were lost to follow-up and assist them to come to appointments
      Navigator trained by SCDAA-Philadelphia/ Delaware Valley
      Health Resources and Services Administration Sickle Cell Disease Newborn Screening Program demonstration project, SCDAA Mid-Atlantic Regional Advisory Committee (MARAC)5 regional clusters, with lead sites in Illinois, California, Tennessee, North Carolina, Maryland (Figure 2)
      • Lay workers, parents of children with SCD, some staff from sickle cell community-based organizations
      • Systematic community engagement recruitment process
      • CHW canvasses a rural area to find SCD patients not enrolled in comprehensive sickle cell care
      • Home visits and SCD care coordination
      MARAC and SCDAA developing a national CHW certification for sickle cell, as special training to augment “basic training” for CHW
      • Kisha Hampton
      • Indiana Newborn screen follow-up
      • Goal: Educate about SCD and improve clinic attendance
      Indiana (divided into regions, a nurse for each region), newborns and children
      • Community health nurse
      • Home visits and phone calls to educate about SCD and encourage clinic compliance
      Nurse for new diagnosis SCD from newborn screen
      • M. Renee Robinson
      • The Grandparent Program.
      • Goal: Improve caretaker knowledge as measured by knowledge quiz

        Robinson MR, Dampier CD, Watkins A, Brunner A. A Program to Improve Medical Education and Social Support for Families of Newborns with Sickle Cell Disease: The Grandparent Program. American Public Health Association 129th Annual Meeting. Atlanta, GA, 2001.

      • Philadelphia (urban)
      • Newborns to 2 years old, n=9
      • Older adult volunteers who have raised a child with SCD
      • Educational and social support on both medical and child-rearing practices
      • Assess success with knowledge quiz
      Didactic training on SCD knowledge, child care, and home visitation, adapted from “Family Friends” inter-generational program
      • C. Hoyt Drazen, Allison King
      • Goal: Promote clinic education attendance, medication compliance, cognitive development
        • Hoyt Drazen C.
        • Abel R.
        • Lindsey T.
        • King A.A.
        Development and feasibility of a home-based education model for families of children with sickle cell disease.
      • St, Louis
      • Newborns to preschool, n=39
      Home visitors for early cognitive development, patterned after “Born to Learn,” promote clinic attendance and medication compliancePatterned after “Born to Learn” curriculum from Parents as Teachers National Center
      Examples of community health worker programs for SCD outside the U.S.
      • Kwaku Ohene-Frempong
      • Health educators for newborn screening program
      • Goals: Home visits and local training for families of newborns, increase understanding of SCD medical care
      • Ghana, Kumasi, and other regions
      • Parents of newborns
      Healthcare providers, health educatorsDidactic sessions, curriculum developed for Ghana with local focus groups by psychologist
      • Clarisse Lobo
      • Goals: Help patients access
      • regional center for care of blood diseases (“Hemo Center”)
      Brazil HEMORIO blood center, Rio de JanieroLay public health worker, “agente de saude” responsible for regular visits to 100−150 householdsFamily Health Strategy is part of a nationally scaled model of primary care services
      AYA, adolescent and young adult; CHW, community health workers; PI, principal investigator; SCD, sickle cell disease.
      Social and cultural alignment of CHWs with their communities is a major aspect of effective intervention. They can be community-based or hospital-based, but regardless of their point of patient interaction, they are most effective when they share common cultural, social, and linguistic aspects with the clients they serve. For comprehensive, culturally appropriate SCD care, CHWs can address many of the barriers to access, communication, support, and disease self-management while reinforcing healthy behavior. Culturally aligned CHWs are an accepted mode of outreach by community members, sometimes in the context of community-based organizations for improving the health of underserved communities.
      • Walton A.
      • Calvo Y.
      • Flores M.
      • Navarrete L.
      • Ruiz L.
      Promotoras: observations and implications for increasing cervical cancer prevention and screening in the Hispanic community.
      U.S. Office of Rural Health Policy
      Community Health Workers Evidence-Based Models Toolbox. HRSA Office of Rural Health Policy.
      • Flores G.
      Community Health Workers, Promotores, and Parents Mentors−Position Paper.

      Reported Use of Community Health Workers in Sickle Cell Disease

      The use of CHWs for SCD has been limited. In the U.S., CHW programs have focused on common diseases. By contrast, based on population prevalence, SCD is considered rare. In the global public health sphere, WHO recognized SCD as a priority topic in 2006,
      WHO. Sickle-cell anaemia. Resolution WHA59.20. 59th World Health Assembly, Geneva, Switzerland, 2006.
      but many countries with the highest incidence of SCD still struggle to balance prioritization of non-communicable and communicable diseases in low-resource settings. To the best knowledge of the authors, CHW interventions dedicated only to SCD have been published in only three reports. In Ghana, home visits by CHWs help families cope with new diagnosis of SCD in a newborn screening program.
      • Treadwell M.J.
      • Anie K.A.
      • Grant A.M.
      • Ofori-Acquah S.F.
      • Ohene-Frempong K.
      Using formative research to develop a counselor training program for newborn screening in Ghana.
      In a peer-mentoring pilot program at St. Christopher’s Hospital for Children, older adult volunteers who raised a child with SCD advise new families on medical and child-rearing practices.

      Robinson MR, Dampier CD, Watkins A, Brunner A. A Program to Improve Medical Education and Social Support for Families of Newborns with Sickle Cell Disease: The Grandparent Program. American Public Health Association 129th Annual Meeting. Atlanta, GA, 2001.

      In St. Louis, CHW home visitors promote early cognitive development, promote clinic attendance, and medication compliance.
      • Hoyt Drazen C.
      • Abel R.
      • Lindsey T.
      • King A.A.
      Development and feasibility of a home-based education model for families of children with sickle cell disease.
      A recent systematic review of CHW interventions for children with chronic health conditions listed SCD as appropriate for CHW intervention and research.
      • Raphael J.L.
      • Rueda A.
      • Lion K.C.
      • Giordano T.P.
      The role of lay health workers in pediatric chronic disease: a systematic review.
      Figure 1 lists possible roles for CHWs in SCD. Multiple SCD CHW demonstration projects are underway (Table 1).
      Figure thumbnail gr1
      Figure 1Multiple barriers can be addressed by community health workers (CHW) for sickle cell disease (SCD).

      Conceptual Bases and Potential Roles for Community Health Workers in Sickle Cell Disease

      Social cognitive theory can guide CHW interventions at the individual and family levels.
      • Bandura A.
      Self-efficacy: toward a unifying theory of behavioral change.
      • Postma J.
      • Karr C.
      • Kieckhefer G.
      Community health workers and environmental interventions for children with asthma: a systematic review.
      Behavior is shaped and maintained by consequences and an individual’s social network (beliefs and resilience of family and friends).
      • Ladd R.J.
      • Valrie C.R.
      • Walcott C.M.
      Risk and resilience factors for grade retention in youth with sickle cell disease.
      • Caird H.
      • Camic P.M.
      • Thomas V.
      The lives of adults over 30 living with sickle cell disorder.
      For example, repeated clinic visits may not be perceived by patients and families as addressing pressing psychosocial needs. Poor alignment with provider−patient needs may lead to patient frustration and perceived gaps in addressing needs. By contrast, in home visits, CHWs can check for potential triggers of acute problems: disorganized medications, inadequate hydration or nutrition, physical barriers, family stress, and household chaos. The SCD CHW must support the positive behaviors and social networks using self-management skills.
      Interventions by CHWs for SCD can be viewed through the socioecologic model. At the individual level, lifestyle, medication adherence, and coping are important issues for individuals with SCD, and CHW interventions have demonstrated impact in these areas for other chronic diseases. Aspects of self-management for SCD can be promoted by coaching in community-based mentoring programs, peer groups, and others. At the family level, multiple social determinants of health can benefit from CHW programs, including maternal health and economic self-sufficiency.
      • Adirim T.
      • Supplee L.
      Overview of the Federal home visiting program.
      CHWs may also be able to help the family understand reproductive choices relevant to the sickle gene, which can be passed along to future children of the patient with SCD and by any family members who have sickle cell trait. At the healthcare system level, CHWs can help the SCD patient navigate multiple appointments, provide reminders of appointments, and organize transportation. At the level of schools or jobs, CHWs can coach the SCD patient in requesting accommodations for their disease, using the appropriate resources under existing rules for people with disabilities.
      Application of limited resources may require CHW services for SCD to draw upon other CHW programs. For example, home visitor programs for early childhood can benefit academic readiness for children with SCD.
      • Adirim T.
      • Supplee L.
      Overview of the Federal home visiting program.
      SCD early childhood home visitor programs might effectively address the neurocognitive impairment
      • McCabe L.
      • Cochran M.
      Can Home Visiting Increase the Quality of Home-based Child Care? Findings from the Caring for Quality Project.
      • Armstrong F.D.
      • Thompson R.J.J.
      • Wang W.
      • et al.
      Cognitive functioning and brain magnetic resonance imaging in children with sickle cell disease.
      and frequent school absences associated with SCD.
      • Fields M.
      • Abel R.
      • Vesely S.
      • Hoyt-Drazen C.
      • King A.
      A pilot study of parent education intervention improves early childhood development among toddlers with sickle cell disease. Presented December 7, 2015 at American Society of Hematology 57th Annual Meeting. Orlando, FL.
      Improving control of asthma as a comorbidity of SCD would address the increased risk of SCD complications in preschool children with asthma as a high-risk group,
      • Vance L.D.
      • Rodeghier M.
      • Cohen R.T.
      • et al.
      Increased risk of severe vaso-occlusive episodes after initial acute chest syndrome in children with sickle cell anemia less than 4 years old: sleep and asthma cohort.
      and many CHW programs have shown benefits for asthma.
      • Nelson K.A.
      • Highstein G.
      • Garbutt J.
      • Trinkaus K.
      • Smith S.R.
      • Strunk R.C.
      Factors associated with attaining coaching goals during an intervention to improve child asthma care.
      • Postma J.
      • Karr C.
      • Kieckhefer G.
      Community health workers and environmental interventions for children with asthma: a systematic review.
      In the socialized medical system of Brazil, one report describes the network of neighborhood CHWs who assist everybody with healthcare needs, and their main role in SCD care is ensuring that patients go to subspecialty care at the regional center for blood diseases.
      • Lobo C.L.
      • Ballas S.K.
      • Domingos A.C.
      • et al.
      Newborn screening program for hemoglobinopathies in Rio de Janeiro, Brazil.

      Evaluating the Impact of Community Health Workers on Sickle Cell Disease

      Impact of CHW and other workforce interventions should include improvement in four primary domains (Table 2):
      • 1
        outcomes related to health and quality of life for the patient and family;
      • 2
        access and utilization of standardized preventative care and acute care services;
      • 3
        patient satisfaction with communication and care; and
      • 4
        long-term medical, psychological, and social metrics of well-being.
        • Oyeku S.O.
        • Wang C.J.
        • Scoville R.
        • et al.
        Hemoglobinopathy Learning Collaborative: using quality improvement (QI) to achieve equity in health care quality, coordination, and outcomes for sickle cell disease.
      Table 2Potential Outcome Measures for Community Health Workers to Address in Sickle Cell Disease
      • Acute care utilization = costliest part of care for SCD
      • ED visits, hospital days, 30-day readmissions
      • “Potentially preventable” ED visits
      • Surrogate measure−Patient Activation Measure (PAM-13) to assess self-efficacy
      • Adherence to longitudinal care
      • Appointments, medications, control of comorbidities
      • Knowledge of sickle cell genetics and reproductive implications
      • Pediatric to adolescent/adult care
      • Quality of life
      • Child development/academic readiness
      • Lifestyle (PROMIS, ASQ-ME) and function (SF-36)
      • Social determinants of health
      Process measures, QA/QI for fidelity of intervention and training
      ASQ-ME, Adult Sickle Cell Quality of Life Measurement Information System; ED, emergency department; PROMIS, Patient Reported Outcomes Measurement Information System; QA/QI, quality assurance/quality improvement; SCD, sickle cell disease; SF-36, 36-Item Short-Form Health Survey.
      Metrics often used for quality of SCD care involve utilization of acute care services, for example, number of acute care visits, length of hospital stay, or hospital readmissions within 30 days. However, cost considerations may inadvertently push CHWs to drive these cost-based, organization-focused outcomes, potentially placing CHWs in conflict with their patients.
      • Yawn B.P.
      • Buchanan G.R.
      • Afenyi-Annan A.N.
      • et al.
      Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members.
      • Nimmer M.
      • Hoffmann R.G.
      • Dasgupta M.
      • Panepinto J.
      • Brousseau D.C.
      The proportion of potentially preventable emergency department visits by patients with sickle cell disease.
      Accordingly, the benefit of interventions to educate patients or coordinate care with the goal of reducing acute care utilization might require alternate approaches.
      Adherence to preventive care, including prescribed medication use and attending scheduled visits, is recognized as a key measure of quality care.
      • Wang C.J.
      • Kavanagh P.L.
      • Little A.A.
      • Holliman J.B.
      • Sprinz P.G.
      Quality-of-care indicators for children with sickle cell disease.
      Some of these adherence measures could be well-suited efficacy measures for SCD. CHW contact with the family shortly before a well-child visit has resulted in fewer missed appointments, fewer sick and acute visits, better understanding of anticipatory guidance,
      • Hardy J.B.
      • Streett R.
      Family support and parenting education in the home: an effective extension of clinic-based preventive health care services for poor children.
      and transition readiness.
      • Wood D.L.
      • Sawicki G.S.
      • Miller M.D.
      • et al.
      The Transition Readiness Assessment Questionnaire (TRAQ): its factor structure, reliability, and validity.
      At the interpersonal level, CHWs operate as a vehicle for delivering educational content and encouraging behavior change. Pain-related poor quality of life in people with SCD
      • Panepinto J.A.
      Health-related quality of life in patients with hemoglobinopathies.
      and social isolation are frequent concerns.
      • Dyson S.M.
      • Atkin K.
      • Culley L.A.
      • Dyson S.E.
      • Evans H.
      Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school.
      • Weisberg D.
      • Balf-Soran G.
      • Becker W.
      • Brown S.E.
      • Sledge W.
      “I’m talking about pain”: sickle cell disease patients with extremely high hospital use.
      The Patient Reported Outcomes Measurement Information System (PROMIS) question bank was developed by NIH to assess quality of life across multiple populations (www.nihpromis.org). The Adult Sickle Cell Quality of Life Measurement Information System (ASQ-ME) question bank was developed specifically for quality of life in SCD, using PROMIS methodology .
      • Keller S.D.
      • Yang M.
      • Treadwell M.J.
      • Werner E.M.
      • Hassell K.L.
      Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks.
      • Treadwell M.J.
      • Hassell K.
      • Levine R.
      • Keller S.
      Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research.
      Quality of life in SCD has been reported using the 36-Item Short-Form Health Survey.
      • Dampier C.
      • LeBeau P.
      • Rhee S.
      • et al.
      Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium.
      • Ahmadi M.
      • Jahani S.
      • Poormansouri S.
      • Shariati A.
      • Tabesh H.
      The effectiveness of self management program on quality of life in patients with sickle cell disease.
      Unfortunately, behavioral change promoted by CHW does not guarantee quiescent symptoms of SCD, even with complete adherence to care plans.
      • McClish D.K.
      • Penberthy L.T.
      • Bovbjerg V.E.
      • et al.
      Health related quality of life in sickle cell patients: the PiSCES project.
      • Sogutlu A.
      • Levenson J.L.
      • McClish D.K.
      • Rosef S.D.
      • Smith W.R.
      Somatic symptom burden in adults with sickle cell disease predicts pain, depression, anxiety, health care utilization, and quality of life: the PiSCES project.
      • Smith W.R.
      • Penberthy L.T.
      • Bovbjerg V.E.
      • et al.
      Daily assessment of pain in adults with sickle cell disease.
      • Raphael J.L.
      • Oyeku S.O.
      Sickle cell disease pain management and the medical home.
      Finally, intervention process measures are useful for defining essential and satisfactory elements of CHW interventions.
      • Harper R.
      • Lewin S.
      • Glenton C.
      • Pena-Rosas J.P.
      Completeness of reporting of setting and health worker cadre among trials on antenatal iron and folic acid supplementation in pregnancy: an assessment based on two Cochrane reviews.
      Quality assurance measures and quality improvement processes are also important to assure ongoing intervention.

      Community Health Worker Certification and Training

      As with other powerful tools for improved health, critical selection of CHW personnel, training, goal setting, reporting, and other structure are crucial for success.

      Rush CH. Community Health Worker Core Consensus (C3) Project, of the American Public Health Association (APHA). www.chrllc.net/id12.html. Published 2015. Accessed November 19, 2015.

      • Viswanathan M.
      • Kraschnewski J.L.
      • Nishikawa B.
      • et al.
      Outcomes and costs of community health worker interventions: a systematic review.
      CHWs must be selected for excellent interpersonal skills, experience, empathy, and problem solving. Training curricula could be suitable for adapting flexibly to trainees of different backgrounds. CHW training generally features role playing and problem solving, experiential training, and meetings between CHW trainees and SCD providers.
      Several training components have been identified by projects with SCD CHWs:
      • 1
        basic training for CHWs for any disease condition;
      • 2
        specific training material on SCD;
      • 3
        experiential learning by shadowing in the SCD clinic; and
      • 4
        continuing education.
      Experienced trainers of CHWs emphasize person-to-person skills, such as respect, patient centeredness, and communication. Practice and application of new knowledge are essential. Role play, teach backs, and other adult education strategies could help prepare CHWs for the complexities of interpersonal interactions that may arise in their work.
      • Swider S.M.
      • Martin M.
      • Lynas C.
      • Rothschild S.
      Project MATCH: training for a promotora intervention.
      • Martin M.A.
      • Mosnaim G.S.
      • Rojas D.
      • Hernandez O.
      • Sadowski L.S.
      Evaluation of an asthma medication training program for immigrant Mexican community health workers.
      Effective use of adult education methods in training emphasizes both practical skills and theoretic frameworks, such as social cognitive theory.
      Despite the advantages of state or national standards for CHW workforce development, as of this writing, no national certification for CHWs yet exists.

      Rush CH. Community Health Worker Core Consensus (C3) Project, of the American Public Health Association (APHA). www.chrllc.net/id12.html. Published 2015. Accessed November 19, 2015.

      Several states are developing legislation and protocols for CHW training and certification.

      CDC. State law fact sheet: a summary of state community health worker laws. cdc.gov/dhdsp/pubs/docs/chw_state_laws.pdf. Published 2013. Accessed November 22, 2015.

      In the absence of state certification programs, training tends to be designed by the organizations that employ CHWs, primarily to focus training on specific tasks. Hence, CHWs may require additional training if they move to other organizations or disease-associated populations.
      An approach to help garner broad support, alignment, standardization, and recognition with widely recognized workforce training would be to collaborate with institutions such as the American Public Health Association, Health Resources and Services Administration within the U.S. DHHS, and major SCD community organizations. A common training curriculum would create a national standardized pool of knowledgeable and skilled CHWs to support the work for SCD care, supplemented by components that address unique populations of, or goals for, SCD. Beginning in 2015, a CHW-focused Health Resources and Services Administration−funded project through the SCD Association of America spans four regions and at least nine states (Figure 2).

      Sickle Cell Disease Association of America (SCDAA). SCDAA Announces HRSA Newborn Screening Program Grant Co-Leads. http://sicklecelldisease.org/index.cfm?page=news&id=91. Published 2015. Accessed November 22, 2015.

      This program would be a fine opportunity to test the concepts of centralized, multisite training and implementation.
      Figure thumbnail gr2
      Figure 2Map of community health worker projects for sickle cell disease.
      Note: Shown are current lead sites for multi-state SCDAA-HRSA programs (star) and other programs serving children and/or adults (triangle).

      Conclusions

      As a rare but socially costly condition that increases health disparities, SCD is in need of alternative interventions for improving short- and long-term outcomes and quality of life. CHWs are an accepted model for improving healthcare outcomes in underserved communities and populations at high risk for poor outcomes. For chronic conditions, CHWs have been shown to bridge cultural, social, and linguistic barriers to chronic disease treatment and improve health outcomes.
      Projects underway by members of this group are currently examining the impact of CHW involvement in different dimensions and outcomes of CHW intervention for SCD with diverse targets for specific populations (e.g., adolescents), settings (e.g., community; urban or rural), and specific healthcare outcomes (e.g., medication adherence). Although results are not yet available, the high rate of patient acceptance of CHWs is an early indicator that CHW interventions can be feasible. Partnership with local and national community-based organizations is emerging as a strong emphasis for SCD, and the SCD Association of America is planning to officially endorse the use of CHWs for SCD.
      A CHW SCD intervention research agenda is needed to move the field forward. The authors recommend that efforts to optimize CHWs in SCD be aligned in terms of training, intervention design, and outcomes measurement as well as culturally appropriate alignment with patient medical, social, and mental health needs. The authors propose a national effort to develop best practices for CHWs in SCD and to demonstrate outcomes on the key indicators described here for medical, social, mental health, and family well-being.
      A new consensus on roles, training, and certification for CHWs is currently under development by the National Area Health Education Center Organization, funded by the Amgen Foundation, with support from the American Public Health Association. CHWs will be ranked in tiers based upon level of formal education (high school, college), disease-specific education, experience serving as CHW, and experience as supervisor or trainer of other CHWs. These tiers will also correspond to levels of certification and compensation. The report from the Community Health Worker Core Consensus Project is expected in 2016 (at: www.chrllc.net/id12.html).

      Rush CH. Community Health Worker Core Consensus (C3) Project, of the American Public Health Association (APHA). www.chrllc.net/id12.html. Published 2015. Accessed November 19, 2015.

      Elements of this proposal include the following strategies for expanding capacity and evaluating impact:
      • 1
        developing standard curricula for training SCD CHWs;
      • 2
        creating a registry of SCD CHWs in local/regional demonstration programs;
      • 3
        organizing SCD Association of America certification and registration of CHW training;
      • 4
        promoting consistency in outcome measures for CHW interventions in SCD;
      • 5
        establishing a “learning collaborative” of CHW efforts in SCD, with opportunities to exchange information about challenges and successes in CHW programs and facilitate refinements to these programs; and
      • 6
        developing a model to reimburse CHW services.
      These advances should be studied as implementation and evaluation for public health impact, and to better define metrics for successful CHW-based care.

      Acknowledgments

      Publication of this article was supported by the Centers for Disease Control and Prevention.
      Support for this manuscript was provided by R21 NR013745 (Co-Principal Investigators Green and Smaldone), HL112727 (Principal Investigator Smith), Health Resources and Services Administration funding for the Sickle Cell Disease Newborn Screening Program.
      Wally R. Smith, MD and Molly Martin, MD are co-senior authors.
      No financial disclosures were reported by the authors of this paper.

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