Designing a Multi-Stakeholder Collaboration to Improve Preventive Care for Children with Sickle Cell Anemia

Abstract

Newly developed measures of health care quality for children with sickle cell anemia (SCA) have revealed significant performance gaps in recommended care. Historically, health systems, Medicaid health plans, and state Medicaid programs have not partnered with patients and families to improve SCA care delivery. We organized two novel multi-stakeholder design meetings to identify potential interventions to deliver high quality preventive care for children with SCA. Invitees included patients with SCA, families, and representatives from pediatric hematology clinics, Medicaid health plans, community organizations, and a state Medicaid program. Participants identified some barriers to care through presentations and facilitated discussions. Over 35 potential interventions and six drivers of high-quality SCA preventive care delivery were organized into a key driver diagram. Many barriers to SCA care delivery could be addressed by Medicaid health plan resources to support members with chronic disease, however these resources are infrequently used in the pediatric SCA population. Bridging gaps between stakeholder groups identified many potential interventions to improve SCA preventive care delivery at all levels of the health care system. Similar multi-stakeholder discussions may be useful for other communities interested in improving preventive care for children with SCA or other chronic pediatric diseases.

Introduction

Preventive care for children with sickle cell anemia (SCA) can reduce major morbidities of this multisystem disease, including stroke and sepsis, as well as reduce hospital admissions. Indeed, the National Heart Lung and Blood Institute’s (NHLBI) expert report on Evidence-Based Management of Sickle Cell Disease recommend a number of preventive therapies, including prophylactic antibiotics for children 0–5 years old to reduce the risk of infection and annual transcranial Doppler ultrasound (TCD) screening for children 2–16 years old to identify those at highest risk of stroke.^1,2 However, despite evidence of effectiveness and the NHLBI expert report recommendations, there are significant large and persistent gaps in SCA preventive care delivery.^3–6 Recognizing these gaps, the Agency for Healthcare Research and Quality’s Pediatric Quality Measures Program funded the development and testing of measures of health care quality for children with SCA.⁷ Two claims-based quality measures developed under this program were recently endorsed by the National Quality Forum: daily antibiotic prophylaxis and annual TCD screening.^8,9

While these new measures facilitate the identification of gaps in SCA preventive care, the question of how to achieve improvement in care for this high-risk population with many barriers to care remains. Compliance with daily prophylactic antibiotics presents unique challenges as children typically take penicillin in suspension, which is dosed twice daily, has a two-week shelf stability, and requires refrigeration.^10–12 While completing an annual ultrasound seems comparatively straightforward in contrast to daily penicillin compliance, multiple authors have documented barriers to TCD screening, including provider awareness, scheduling logistics, and family education and preparation.^13–15 To make matters worse, parents of children with SCA report gaps in care coordination.¹³ The end result of these barriers is poor performance on both measures persisting many years after inclusion in the NHLBI expert report recommendations: <20% of eligible children with SCA receive antibiotic prophylaxis³ and <50% receive annual TCD screening.⁴

Multiple organizations have taken a collaborative approach to improving care for children with SCA, partnering hematologists and primary care providers with public health agencies, community agencies and/or researchers.^14,15 Yet, improvement in these preventive services has been modest at best. However to our knowledge, no improvement efforts have included Medicaid health plans or state Medicaid programs. Medicaid health plans play a major role in providing care for children with SCA, given the vast majority of these children are enrolled in Medicaid at some point in their life.¹⁶ To test whether and how these new quality measures could be used by health systems, Medicaid health plans, and state Medicaid programs, we formed a research consortium including experts in quality measure development, quality improvement, and local organizations at each of these 3 levels of the health care system within southeastern Michigan. This region includes Detroit, with an incidence of 12.4 SCA diagnoses per 10,000 births, accounting for 49% of infants born with SCA in the state of Michigan.¹⁷ In recognition of the complexity of the SCA preventive care delivery system for children, we convened two multi-stakeholder meetings including patients, parents, providers, and Medicaid representatives to identify potential solutions to improve care delivery for children in the state of Michigan.

Methods

Using principles drawn from collaborative improvement networks,^18,19 we conducted two multistakeholder meetings to design an approach to improving SCA preventive care delivery. Meeting activities were structured to achieve 3 goals: 1) build a common understanding of the current SCA care delivery system and vision of an ideal future state, 2) identify gaps in knowledge about SCA preventive care and the delivery system across stakeholders, and 3) brainstorm interventions for improved care delivery.

Participants

Meeting invitees were identified primarily through our SCA research partnerships across multiple levels of the health care system. We discussed our plans to hold a multidisciplinary design meeting in person when possible in order to gauge potential invitees’ interest in collaborating with other stakeholders. In addition to representatives from two pediatric hematology clinics, key leaders at three Medicaid health plans were invited and encouraged to bring colleagues as appropriate. Invitations were also sent to primary care pediatricians in one health system, and to representatives from the State of Michigan Hemoglobinopathy program and the Michigan Department of Health and Human Services Office of Health Policy and Innovation. We invited sickle cell disease community leaders, including the director of the Sickle Cell Disease Association of America – Michigan Chapter. Finally, we invited parents of children with SCA and people with SCA. Parent and patient participants were initially identified by pediatric hematology providers or sickle cell community leaders and subsequently screened via telephone interview. Those interested in representing the SCA experience and working to broadly improve the care of others were invited to join the meeting. Research team members included the principal investigator, multiple co-investigators, project managers, and an experienced parent advocate.

Prework

Participants were asked to complete “prework” before attending the first meeting to prepare them for a discussion of how to improve SCA preventive care. Each was asked to watch a video of a family sharing their experience with SCA²⁰ and then to consider strengths and opportunities for improving care according to the following 5 focus areas adapted from the Chronic Care Model:²¹ 1) Access & communication, 2) Proactive, timely, reliable care, 3) Clinic visit, 4) Medication adherence, and 5) Insurance coverage.

Meeting 1 Agenda

The primary objectives of the first meeting were to: 1) build an understanding of preventive care for children with SCA and the systems which deliver such care, 2) build a collaboration among partners, and 3) develop ideas for interventions to improve preventive care. Given the variety of stakeholders in the room and inherent hierarchies present in medicine, facilitators explicitly stated that each participant’s input was valued and respected. Throughout the day, we used active facilitation to emphasize the patient and family voice in all discussions.¹⁹

Initially, background clinical information was provided by a pediatric hematologist which included how preventive care could prevent long term complications. A study team epidemiologist then presented State of Michigan Medicaid claims performance data on the prophylactic antibiotic and TCD screening measures which indicated marked potential for improvement. To further develop a public narrative²² for the group, a parent representative shared her family’s stories with SCA and health care delivery. One parent’s child suffered a stroke at 11 years of age and became quadriplegic and nonverbal. To build urgency, participants were challenged to develop a shared vision for ideal SCA care delivery. Each participant wrote ideas on sticky notes which were then posted for the group to read.

There were multiple small group discussions which used an adaptation of the nominal group technique^23,24 to share ideas and identify solutions to improve SCA preventive care. For each discussion period, participants were intentionally grouped to mix different types of stakeholders from different organizations to facilitate learning from multiple perspectives. A member of the research team facilitated each small group discussion to encourage each stakeholder to write down their ideas on sticky notes and share them with the group. The research team member then summarized each small group’s discussion for the larger group and all sticky notes were collected. At the conclusion of Meeting 1, participants identified 3 focus areas for further work and volunteers to join smaller workgroups for each focus area were identified. Following Meeting 1, all invitees were invited to participate in a follow up webinar which summarized the meeting’s findings and next steps for the group. Research team members who had served as facilitators wrote summaries of each small group discussions they led.

Preparation for Meeting 2

Between Meeting 1 and Meeting 2, there were 1 recap phone call for all invitees, 3 individual focus area workgroup phone calls with meeting participants who had expressed interest in working on one of the 3 focus areas, and 1 follow up call for all 3 focus area workgroups. For meeting 2, all of the previous meeting invitees were included along with specific requests for attendance by care coordinators from each Medicaid health plan, based on the issues raised in Meeting 1. Prework for attendees included either viewing a background video²⁵ or reading an article²⁶ on key driver diagrams, a quality improvement tool which organizes the theory of a system that produces a desired outcome. Within a key driver diagram, each potential intervention is linked to the key drivers of the outcome that it might directly impact, thus creating testable hypotheses for experimentation.²⁶ Meeting organizers reviewed all notes from Meeting 1 and used them to draft a key driver diagram for improving sickle cell preventive care which was presented at Meeting 2.

Meeting 2 Agenda

Objectives for Meeting 2 included 1) exploring the role of Medicaid health plans’ care coordinators and community organizations in SCA preventive care, 2) understanding the Model for Improvement, and 3) considering population health management as a method to improve SCA preventive care. The Model for Improvement is a quality improvement methodology commonly used by health care organizations that incorporates key driver diagrams with other tools for organizing improvement.²⁷ Population health management is a method for improving care for people with chronic disease by tracking patient care processes and clinical outcomes for a defined patient cohort. This approach has been used as part of the Chronic Care Model²¹ in primary care²⁸ and pediatric collaborative improvement networks,²⁹ and is a key part of the Best Clinical and Administrative Practices Quality Framework utilized by many Medicaid health plans.³⁰ Similar to Meeting 1, facilitators set expectations for mutual respect and emphasized patient and family voices throughout the day.

Performance on the daily antibiotic prophylaxis and annual TCD screening measures calculated from State of Michigan Medicaid claims data was again presented. Medicaid health plan care coordinators participated in a panel discussion about their role and opportunities to improve preventive care. Leaders from the state hemoglobinopathy program and the Sickle Cell Disease Association of America – Michigan Chapter provided overviews of their programs. A parent representative who is also a clinical social worker shared her family’s story with SCA as well as a reminder to consider the many families not represented in the stakeholder meeting. Didactic sessions included an introduction of the Model for Improvement and population health management.

In addition to these presentations and didactic sessions, there were small group discussions focused on developing and prioritizing interventions listed on the key driver diagram. Participants wrote suggestions on sticky notes which were collected by the research team and then incorporated into the key driver diagram. The updated key driver diagram was shared with all meeting participants after Meeting 2 via email for final edits and validation.

Results

Participants

A total of 29 participants attended Meeting 1, with representation from each of our key stakeholder groups: people with sickle cell disease and their parents, pediatric hematology clinic providers and staff, various types of Medicaid health plan representatives (e.g., medical director, pharmacy director), and State of Michigan Medicaid and Hemoglobinopathies program staff. In addition to research team members, the recap phone call had 10–12 participants. Each of the 3 individual focus area workgroup phone calls had 2–4 participants each in addition to research team members and the follow up call for all 3 workgroups again had 10–12 participants. Meeting 2 had a similar number of participants with the addition of Medicaid health plan care coordinators (Table 1). All people with SCA, parents, and SCA clinic representatives had previously attended Meeting 1. New participants included one primary care physician, one Medicaid health plan medical director, and the Medicaid health plan care coordinators. At the suggestion of a parent during Meeting 1, the design group became known as the Sickle Cell Trailblazers.

Table 1.

Sickle Cell Disease Trailblazer Meeting Participants

Role	Meeting 1	Meeting 2
Parents	5	3
People with Sickle Cell Anemia	1	1
Pediatric hematology faculty and staff	5	3
Primary care pediatrician	1	1
Medicaid health plan staff (medical director, market pharmacy director, case managers)	6	8
State Medicaid Program Staff	1	0
State Hemoglobinopathies Program Staff	1	1
Sickle Cell Disease Community Organization Leader	1	1
Learners (students, fellow physicians)	1	2
Research Team	8	5
Total	30	25

Common Vision for Ideal Future State of SCA Care Delivery

During Meeting 1, participants envisioned an idealized future state wherein each patient received personalized, individual care from each part of the health care delivery system. Sample quotes from participants organized according to the Institute of Medicine’s six domains of health care quality³¹ are shown in Table 2.

Table 2.

Common vision for ideal future state of sickle cell anemia care delivery organized by Institute of Medicine Quality Domains

Institute of Medicine Quality Doman	Example quotes
Patient-centered	I would feel heard, understood, respected, valued, and a part of the team
	Detailed reason for decisions
	Consistent staff for better relationship building and trust
	Trust between families and providers
	Shared decision making to identify and strategize removal of barriers for outpatient care
	School care and guidance
	Families would know what to expect during visits, vaccines, medications, screening tests
	A sense of calm and community knowing that you’re not alone
Effective	Patients consistently being offered transcranial Doppler ultrasound
	System in place to improve and follow up for increased adherence
	Decreased mortality rates
	Standardized best practice care delivered
	Mainly well visits with minimal hospitalizations
	No strokes, fewer pain crises
Efficient	Care coordination
	Checklist before appointments
	Shorter visits
	Multidisciplinary team at every visit: hematologist, nurse, lab, social worker
	Systematic policies and approach to transition from pediatric to adult
Timely	Shorter wait time with good quality care and access to care
	No overcrowded waiting rooms
	Lab results in timely manner
Equitable	No disparities in care
	Consistent care provided throughout the state of Michigan
Safe	Decreased medication errors

Identifying Gaps in Knowledge Across Stakeholders

Through our discussions in both meetings, multiple gaps in knowledge across stakeholders were identified, particularly involving the Medicaid health plans. Medicaid health plans have not traditionally focused on pediatric chronic disease populations for quality efforts. In part because of this, Medicaid health plan representatives were unacquainted with SCA complications, recommended SCA preventive care, and the many barriers to care faced by these children, their families, and pediatric hematology providers. By sharing their experiences, patients and family members helped Medicaid health plan and hematology clinic staff begin to understand specific challenges they face in obtaining appropriate care for a child with SCA and inspired the group to improve their care. Pediatric hematology providers and staff shared challenges related to coordinating clinic schedules for a population with a high no-show rate, in part due to transportation barriers. Along with Medicaid health plans, primary care physicians expressed gaps in knowledge about appropriate SCA preventive care along with a willingness to learn more and contribute to care coordination for this population.

In turn, clinicians were unaware of many resources that may be offered by the Medicaid health plans to connect their members to care. These resources may include home medication delivery, appointment scheduling,and nurses to provide care coordination assistance, including identifying community resources to aid families. Although the availability of care coordination services is contracturally required for Michigan Medicaid managed care plans,³² Medicaid health plans had not previously used these resources systematically for children with SCA. Given this identified knowledge gap and recognition that a care coordinator could address some issues faced by families, Medicaid health plan care coordinators were invited to participate and present at the second design meeting. At the second meeting, Medicaid health plan care coordinators shared inspiring stories of how their work had helped adult Medicaid health plan members with chronic diseases connect to needed resources, from developing personalized goals to manage chronic disease to identifying stable housing.

Brainstorming Interventions for Improved Preventive Care

In small group discussions, participants brainstormed dozens of potential interventions to improve SCA preventive care in Meeting 1 and further refined these ideas in Meeting 2. Barriers to preventive care delivery were identified in each of the five Chronic Care Model focus areas through the course of these discussions (Table 3). The research team organized the potential interventions into a key driver diagram including six key drivers (Figure 1) which was presented at Meeting 2. During Meeting 2, participants edited the draft key driver diagram through a series of discussions, drawing on didactic learnings about community resources, Medicaid health plan care coordination services, and population health management.

Table 3.

Key Barriers to Delivery of Sickle Cell Disease Preventive Care

Category	Examples
Medication Adherence	Gaps in communication between pharmacies, SCA clinic, and patients about refills
	Children resist taking some medications that don’t taste good
	Changes to daily routine can make it harder to remember to take medications
	Penicillin suspension is only stable for 2 weeks and requires refrigeration
	Parents serve as liaison between pharmacy and SCA clinic
	Lack of transportation to pharmacy for twice monthly refills
Insurance Coverage	Requirement for annual prior authorizations to see a hematologist are burdensome and seem unnecessary due to the fact that SCA patients will need hematology care throughout life
	Many patients and families do not know that health plans have care coordinators who help families with education and support (e.g. arranging transportation, appointment reminders)
	Most clinicians are not aware of the services and support of health plans
	Limitations on flexible spending accounts because of some pharmacies’ regulations
Access and communication	Lack of direct connection to sickle cell provider or nurse via phone, email or text
	Lack of available time slots for follow up visits after hospital discharge
	Limited time during week when SCA clinic providers are available to meet medical needs (e.g. clinic 2 days per week)
Proactive, Timely, Reliable Care	Lack of coordination between SCA clinic providers and other services (e.g. radiology, outpatient physical therapy)
	Frequent prior authorization denials for commonly used SCA medications (e.g. iron chelators)
	Comprehensive pain management available only for inpatients
	Conflicting messages from providers when seeking acute care in the Emergency Department
Clinic Visit	SCA clinic visits include multiple activities (e.g. lab draws, studies, social work visit) often resulting in long days with lots of wait time
	Coordinating lab appointment times with clinic visits can be challenging since lab results are necessary for management
	Patients and families feel like providers and staff (e.g. medical assistant) do not know them, particularly when they have to repeat their history multiple times
	Clinic staff examining children without introducing themselves
	Perception of bias and judgment from clinic providers and staff

SCA = sickle cell anemia

Figure 1.

Sickle Cell Anemia Preventive Care Key Driver Diagram

Key driver diagram⁴¹ summarizing how potential interventions (right column) impact key drivers (middle column) of improved delivery of SCA preventive care. ACA = sickle cell anemia, TCD = transcranial Doppler ultrasound

Many possible interventions were included in the final version of the key driver diagram (Figure 1). Families suggested opportunities for just-in-time contacts from Medicaid health plans such as a reminder of resources available for coordinating follow up care after a hospital discharge or birthday cards with reminders to schedule annual TCD appointments. Participants recognized the importance of having accessible clinic appointments with systems to allow for scheduling and rescheduling appointments to maximize efficiency for both families and providers. Other ideas included using population health management approaches to monitor delivery of SCA preventive care both at the individual clinic level as well as within a Medicaid health plan. Multiple opportunities for pharmacies to partner with providers and families were also identified, including developing systems for clear and reliable communication. In recognition of the specificity of these interventions, it was proposed that pharmacies who offer these services could be identified as exemplary SCA pharmacies and shared with families by clinics and Medicaid health plans.

Discussion

The Sickle Cell Trailblazer Design Meetings successfully brought together various stakeholders from across the continuum of preventive care for children with SCA. Through planned discussions, participants laid out a common vision for an ideal future state of SCA preventive care, identified gaps in knowledge across stakeholders, and brainstormed dozens of potential interventions. These discussions identified multiple gaps in knowledge about the many barriers faced by families and resources available across stakeholder groups, which in itself represents a significant barrier to the delivery of coordinated, efficient, appropriate preventive care.

The vision of ideal care that emerged from the design meetings is noteworthy as it calls for personalized, individual care for people with SCA and their families. Although the description of this care is similar to other descriptions of quality health care, these qualities may be even more critical for care delivery in the sickle cell population. People with SCA have frequent contact with the health care system in the outpatient clinic, Emergency Department, and hospital.^3,4,33 However, it can be difficult to attribute some SCA patients to a specific health care system or health care plan due to the multiple venues at which they may seek care provision. As a result, these children may have a higher risk of being lost to follow up. Our group identified some barriers to receiving care, many of which have been previously described,^{10–13,34–36} but additional major barriers may include distrust of the health care system among the black community, socioeconomic challenges, and issues of health literacy.^37–40

In terms of learning across stakeholders and brainstorming potential interventions, each participant contributed an important perspective to the design meetings, emphasizing the need for community approaches to improve care for children with SCA. First and foremost, SCA patients and parents provided unique insights into the challenges of obtaining high quality preventive care. Importantly, these families who had the interest, time, and resources to join the design meetings recognized that they are empowered to advocate for their children. This may be in contrast to many families affected by SCA who may not have the knowledge and resources to advocate for themselves in the same way, a message echoed by community leaders.

Bringing together these various stakeholders allowed us to construct a more comprehensive picture of potential interventions to improve delivery of SCA preventive care. The dozens of potential interventions identified by meeting participants represent varying levels of complexity and involve all stakeholders present. Some interventions could easily be implemented in a short period of time (ie, reminder postcard for TCD) while others would require complex planning and execution (ie, population health management within a Medicaid health plan). Importantly, families thought that even relatively simple interventions could be quite helpful, suggesting that improvements in preventive care delivery are feasible.

We believe the approach of including Medicaid health plans in the design of quality improvement efforts is novel in the sickle cell community and may also be applicable to other pediatric chronic disease populations. Although researchers and quality improvement leaders have not traditionally partnered with payors to improve care, Medicaid health plans offer a unique set of tools to connect their members to appropriate care and to educate and incentivize providers to deliver appropriate care. For example, Medicaid health plans commonly deliver medication to the homes of adult patients with diabetes and offer incentives for members to complete annual exams. Medicaid health plans also deliver educational material to primary care offices as well as feedback for individual providers on their performance on specific quality measures. These tools could be used to improve SCA preventive care as well as preventive care for other pediatric chronic diseases, such as outpatient follow up visits after Emergency Department visits for asthma or developmental screening for children with congenital heart disease. Applying existing interventions to new populations might provide Medicaid health plans with efficient mechanisms to improve pediatric member outcomes.

Limitations

Because our meeting participants were drawn from a specific region in the state of Michigan, it is possible that our key driver diagram and interventions may not be generalizable to other locations, particularly states with different Medicaid structures. However, we believe the method of bringing together stakeholders from different levels of the health care system may be generalizable for other communities and states. Another limitation is that our insights from patients and families were limited to those who were interested and able to join one or two meetings held on a weekday, which may represent a biased view of the SCA patient and family experience.

Future Work

Future work includes continuing to partner with meeting participants to test possible interventions with a goal to identify effective interventions and implementation mechanisms to achieve our larger goal of improving the quality of care received by children with SCA. For example, we have worked with one Medicaid health plan to develop a registry of children with SCA enrolled in their program to facilitate population health management, including partnering members with SCA with Medicaid health plan care coordinators and connecting these children to supplemental health care services offered by the State of Michigan. Another Medicaid health plan met with one hematology clinic’s clinicians and staff from to discuss care coordination issues for patients they share. We also plan to apply this multistakeholder approach to improving care for children with other types of chronic disease.

Conclusion

There is a critical need to identify novel and innovative strategies to increase the receipt of preventive care among children with SCA. Convening a multistakeholder meeting including SCA patients and families, hematology providers, community organizations and Medicaid health plans enabled us to develop a key driver diagram for the delivery of high quality SCA preventive care, including dozens of interventions. Similar multidisciplinary approaches including Medicaid health plans may be helpful for other communities or states interested in improving SCA preventive care as well as other pediatric chronic conditions.