Addressing Sickle Cell Disease A Strategic Plan and Blueprint for Action (2020) / Chapter Skim
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5 Health Care Organization and Use
5 Health Care Organization and Use
Pages 185-248
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Chapter Summary • Children and adults with sickle cell disease (SCD) require specialty and primary care services continuously across the life span.
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1 is critical. Furthermore, it is important that health care providers understand and consider the negative societal views of members of the SCD population, including stigma, racism, and various stereotypes, such as the assumption that someone coping with chronic pain is drug seeking (addressed in Chapter 2)
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Medical homes address preventative, acute, and chronic care from birth through transition to adulthood. "A medical home facilitates an integrated 2 Bright Futures publications are geared toward health professionals and educators and cover topics such as health supervision, nutrition, and mental health for infants and children (Bright Futures, n.d.)
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(2013a) reported that children receiving comprehensive care from a medical home, as measured by specific, standardized questions eliciting parental report, had fewer emergency department (ED)
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These services are provided in many settings but have traditionally developed in large, urban, academic hospitals. Emergency medicine teams are actively involved in managing these pediatric patients, but acute care by hematologists and other sickle cell experts has emerged as well.
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. A significant issue concerning acute care is that individuals with SCD often have repeat ED visits and admissions.
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. One pilot study found that adults with SCD receiving free dental care demonstrated a significant reduction in the number of hospital admissions as well as in the total number of days spent in the hospital if dental work was completed; however, the study also found that there was an increase in the number of hospital days experienced by men in the study population (Whiteman et al., 2016)
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. Having a medical home does not improve referrals to Part C of IDEA (Ross et al., 2018)
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Evidence from Children with Special Health Care Needs and with Medical Complexity Because of the sparsity of literature directly related to SCD, the committee reviewed evidence from the general literature on children with chronic or complex conditions to inform their understanding of the medical needs of children with serious chronic conditions. Children with SCD fall under the rubric of children with special health care needs (CSHCN)
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. The research on CSHCN supports the importance of a medical home arrangement in improving physical and mental health outcomes, satisfaction with care, accessibility, efficiency in health services use, access, systems, and communication.
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While access to coordinated care is similar between those with and without special needs (about 43 percent versus 53 percent, respectively) , only 23 percent to 36 percent of children had a medical home if they were from a home where English was not the primary language or where parents exhibited low educational attainment or had low income (Lichstein et al., 2018)
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Case management services may improve acute pain and chronic pain management, but their use is under-reported (Brennan-Cook et al., 2018)
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As noted above, the evidence is mixed as to the effect of the medical home on parents' experience of coordination and reduced use of acute care. In at least one study, the stand-alone model proved less effective (Wood et al., 2009)
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and acute care use. A recent meta-analysis of the literature on telehealth in SCD management over the past two decades describes interventions for 747 participants, including older children and adolescents (69 percent)
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The telementoring model has been applied through the Health Resources and Services Administration (HRSA) , which funded the Sickle Cell Disease Treatment Demonstration Regional Collaborative Program (SCDTDRCP)
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However, the committee found few studies that have explored the relationship between health literacy and health care use in people living with SCD. One study suggests that there is no relationship between health literacy and acute care service use (Caldwell, 2019)
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Changes in the course and consequences of the disease shift from adolescence to adulthood. This is most evident in adult mortality rates and in the patterns of health care usage, particularly in the use of acute care.
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An examination of data from 4,636 patients with SCD from the California Registry and Surveillance System for Hemoglobinopathies project found a higher use of acute care services among young adults with SCD. From 2005 to 2014 the average number of annual ED visits for patients with SCD was 2.1; ED use was highest among young adults (2.8 visits for individuals aged 20–29.9 years)
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. A time-series comparative study at five large pediatric and adult academic primary care practices in the District of Columbia found that quality improvement activities based on the Got Transition core elements resulted in improvements in transition from pediatric to adult care, as measured with the Health Care Transition Index (pediatric and adult versions)
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Best practices, particularly around transition readiness, optimizing transition success across various care delivery sites, and models of care require further investigation. Young adults with SCD have also identified isolation as a key challenge during the transition process, and learning from someone who has been through the process is a desirable component of transition (Sobota et al., 2015)
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Areas of emphasis for transitioning should include "preparing pediatric patients for the culture of adult medicine, promoting self-advocacy in obtaining support from schools and employers, and addressing issues of funding of health care services" (Treadwell et al., 2011, p.
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The challenges of dealing with chronic pain as well as managing opioid therapy, implicit bias and stigma, assumptions around opioid use in SCD reflecting addiction, and provider knowledge deficits about SCD all contribute to reduced access to evidencebased primary care services (Brennan-Cook et al., 2018; Gomes et al., 2015)
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established a population health model for managing the approximately 3,000 individuals living with SCD in the state in 2017 who were publicly insured under the Medicaid managed care organization. CCNC identified, through multi-stakeholder conversations, barriers to accessing care that led to poor outcomes and increased the cost of care, including irregular/poor follow-up with both PCPs and hematologists, a lack of insurance, and the distance from the specialty SCD centers in the state (Steiner et al., 2008)
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Most adults with SCD will have acute pain episodes, and many more will experience chronic pain, the management of which is nuanced, experiential, and unstandardized. In an ongoing prospective study, Examining Sickle Cell Acute Pain in the Emergency Versus Day Hospital, which examines baseline characteristics of adults with SCD within 60 miles of four cities in the United States, 54 percent of individuals with hemoglobin SS disease and 46 percent with hemoglobin SC disease had three or more acute visits over a 12-month period, and 68 percent of the study cohort reported having chronic pain (Lanzkron et al., 2018a)
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. This model was evaluated across eight health systems in Florida, and the results suggest that there is a benefit in reducing acute care use; in particular, the model appears to better address total health care needs because individuals benefit from the complementary expertise of the providers (Mainous et al., 2019)
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Acute Care Acute pain is the most common reason that individuals with SCD seek health care, even though the vast majority of acute pain episodes are managed at home (Dampier et al., 2002b; McClish et al., 2006; Smith et al., 2008b)
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. Institutional Acute Care Home-based pain management and health system–based acute SCD pain management (acute care use)
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The Georgia Comprehensive Sickle Cell Center established the first 24-hour acute care center for SCD with a philosophy of prompt access to pain relief and engagement in ongoing comprehensive care to improve disease outcomes for its large SCD population (see Appendix F)
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It allows for the evaluation of pain and high-dose analgesic therapy over an extended period in an inpatient-like setting. CDUs are typically open for longer periods than infusion centers but follow similar protocolbased algorithms for delivering optimal pain management and investigating the reasons or triggers for acute pain exacerbation.
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ED care is also quite expensive. According to 2009 estimates for approximately 70,000 individuals with SCD in the United States, the cumulative health care costs for individuals living with SCD exceed $1.1 billion per annum, representing mostly acute care use or ED and hospital admissions (Kauf et al., 2009)
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. Thus, larger-scale epidemiologic studies are needed to develop an accurate measure of acute care use by SCD patients to guide treatment protocols (Lanzkron et al., 2015)
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High-Use Acute Care A small subpopulation of individuals living with SCD accesses acute care at rates significantly more than two standard deviations above the mean of the population. These individuals are often referred to as "super-users" and may present to sickle cell day units and hospital EDs much more frequently than others with a similar disease and comorbidity burden (Carroll et al., 2011)
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. This unblinded pragmatic randomized controlled trial included 1,876 patients under the care of a hospitalist for their inpatient admission to receive either usual care after discharge or care in a dedicated post-acute care multidisciplinary transition services clinic run by hospitalists.
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. Palliative care services to improve the QOL for people with serious illness, such as SCD, have been explored as a method to improve pain management and to support end of life, which typically occurs two to three decades earlier in individuals with SCD than in the general population (Ajayi et al., 2016)
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More information about employment outcomes for individuals living with SCD can be found in Chapter 2. COMPREHENSIVE SCD CARE DELIVERY MODEL Ultimately, enabling the delivery of effective treatment to all individuals living with SCD at all stages of the disease will require developing and
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The splenic dysfunction that leads to an increased risk for infection was well established by the time that the 1972 Sickle Cell Disease Control Act was implemented. One of the first efforts of the comprehensive sickle cell centers was the Prophylactic Penicillin Study in 1983 (Gaston et al., 1986)
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Below is a brief description of the desirable components, identified by the committee, of a team-based, comprehensive care delivery model: • Health maintenance and prevention. These are services aimed at estab lishing a disease steady state across the life span, including genetic testing for hemoglobin variants and RBC antigens and the management of long-term therapies, including HU, chronic ransfusions, and stem cell therapies.
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The comprehensive sickle cell centers conducted research to improve the treatment and prevention of complications, enhance the transfer of these new findings to the clinical setting, and identify new research directions. While research was a core component of the original design, centers were also required to provide support ive activities in diagnosis, management education, and counseling and to spread the research agenda across basic, translational, clini cal, and outcomes topics.
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This involved establishing communication channels between the comprehensive sickle cell center and the community via liaisons, who would inform the community about programs and provide community input into programmatic devel opment and priorities. Traditionally, these liaisons were members of a formally established SCD CBO with a close affiliation via formal membership to the national advocacy agency (the Sickle Cell Disease Association of America)
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. These recommendations and proposed operational elements have been incorporated into specific care delivery models, such as the PCMH and CPC+.
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CPC+ is a primary care medical home model with a focus on advancing primary care through regionally based multi-payer payment reform and care delivery transformation (CMS, 2019)
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226 ADDRESSING SICKLE CELL DISEASE BOX 5-1 Key Elements for an Ideal Care Model Team-Based Care • Clinician-led, multidisciplinary team that includes patient and family involvement for shared decision making • Pre-visit planning • Alternative appointment types Patient-Centered Care • Multidisciplinary medical and behavioral health assessments • Program priorities match patient priorities and needs • Cultural appropriateness • Outreach • Clinical decision support • Self-management • Shared decision making Patient Access to Care • Access to monitoring and evaluation • Access to outpatient services • Access to medical records and continuous care Case Management • Risk assessment and mitigation through care management • Person-centered care plan and care management Care Coordination and Transitions • Newborn screening • Transitions of care Quality Improvement Initiatives • Transparency in methods for measuring and reporting clinical outcomes • Patient needs assessment • Qualitative and quantitative evaluation • Benchmarking • Continuous improvement for data-driven quality improvement for increasing payment for practices that perform population management and high-quality care across all domains of care. Comparison with Hemophilia Like SCD and CF, hemophilia is a rare hereditary disorder whose treatment uses significant resources for the health care system (Tarantino
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The CF model and hemophilia are further described in Chapter 8. Sickle Cell Disease Treatment Demonstration Regional Collaborative Program The SCDTDRCP, which began in 2004 and was funded by HRSA, serves as a good model for organizing the delivery of comprehensive SCD care.
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BARRIERS TO COMPREHENSIVE CARE There are various barriers to developing a system of comprehensive care for SCD; this section describes several such barriers and possible ways to overcome them. Geographic Barriers Few individuals living with SCD are seen by or have access to a comprehensive sickle cell center with specialized providers (Grosse et al., 2009)
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. A more sophisticated approach, Project ECHO, is an interactive model of training hospital and acute care providers in high-quality, culturally sensitive care for individuals with SCD (Arora et al., 2007)
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Insurance may not be adequate for the individual's needs, particularly durable medical equipment (NASEM, 2017) , behavioral health care (IOM, 2003c)
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Individuals with SCT have an increased risk for chronic renal disease, pulmonary embolism, and rhabdomyolysis (Naik et al., 2018)
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Conclusion 5-1: The available evidence suggests that the receipt of comprehensive care from a medical home is associated with fewer emergency department visits and hospitalizations for children with SCD. The receipt of comprehensive care involving a hematologist is also associated with greater receipt of preventive services for children with SCD.
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care, including community sup ports to improve health outcomes, quality of life, and health inequali ties. Relevant stakeholders may include the National Minority Quality Forum, National Medical Association, American Society of Pediatric Hematology/Oncology, American Academy of Pediatrics, American Board of Pediatrics, American College of Physicians, American Society of Hematology, Sickle Cell Disease Association of America Inc., Sickle Cell Adult Provider Network, and other key clinical disciplines and stakeholders engaged in SCD care; health systems; and individuals liv ing with SCD and their families.
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2009. Comparisons of high versus low emergency department utilizers in sickle cell disease.
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2005. Pain management of sickle cell disease.
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2010. Acute care utilization and rehospitalizations for sickle cell disease.
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, ED observation, day hospital, and hospital admissions for adults with sickle cell disease. Western Journal of Emergency Medicine 19(2)
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2013. Academic attainment findings in children with sickle cell disease.
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2009. A systematic review of barriers and interventions to improve appropriate use of therapies for sickle cell disease.
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2019. Acute care utilization at end of life in sickle cell disease: Highlighting the need for a palliative approach.
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2018a. In creased acute care utilization in a prospective cohort of adults with sickle cell disease.
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2014. Access to patient-centered medical homes in children with sickle cell disease.
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2013. Mental health disorders influence admission rates for pain in children with sickle cell disease.
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2020. Comparing transitional care for teens and young adults with sickle cell disease with and without peer mentoring https://www.pcori.org/research-results/2017/comparing-transitional-care-teens-and young-adults-sickle-cell-disease-and (accessed January 16, 2020)
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2013. Sickle cell disease pain management and the medical home.
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2019. Imple mentation of an emergency department screening and care management referral process for patients with sickle cell disease.
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2017. Optimizing the care model for an uncomplicated acute pain episode in sickle cell disease.
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2019. Health literacy and knowledge of chronic transfusion therapy in adolescents with sickle cell disease and caregivers.
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