A Longitudinal,Relationship-Based Model for Managing Complex Chronic Disease in the Medicaid Population

Abstract

Health care systems have made concerted efforts to improve value for individuals with complex and chronic disease. Despite these efforts, this population (and the Medicaid population in particular) has been historically difficult to impact as many members are disproportionately impacted by social determinants of health that interfere with their ability to engage the health care system effectively. Transactional, solutions-based interventions to resolve barriers to care have been ineffective at either improving outcomes or reducing cost in the long term. The authors identify 3 core barriers that prevent time-limited, transactional interventions from effectively solving complex health and social problems: trust, self-efficacy, and complexity. By evolving from a transactional framework to a relational framework, case managers can develop relationships with clients that will help overcome these barriers. More specifically, clinical case management can be utilized to resolve these barriers by implementing a long-term, relational approach with clients through 5 key principles: ensuring continuity of care, leveraging the case management relationship, titrating support and structure, engaging flexibility, and facilitating patient resourcefulness. This article discusses how these principles resolve the identified barriers and how such a model is currently being executed in University Hospital's system. RWJF Grant I.D Number is 98426.

Background

To significantly improve value, health care systems have focused on the subset of individuals with complex chronic disease who have the worst outcomes and utilize the most care—the 5% of the population who utilize 50% of resources. This population has proved devilishly difficult to impact, perhaps most notably for individuals on Medicaid, who disproportionately struggle to overcome social influencers that both negatively impact health and interfere with engagement.^1
–3 Concerted efforts to address social needs and remove barriers to engagement have had little impact on the outcomes and cost for this population.⁴

Many systems and payers have responded by creating algorithms to identify individuals most likely to benefit from existing care management programs—also referred to as impactability—and then directing resources and interventions to only those patients. These efforts have yielded some success in reducing low-value spending.⁵ Yet, the characteristics that are commonly used to identify individuals as unimpactable—mental health diagnoses, substance use disorders, housing instability, language factors, and even single parenthood—risk promoting continued marginalization of already marginalized patients, while absolving health systems and payors of the responsibility for innovation and transformation.^6,7

Yet, others have responded by rethinking how health care systems approach engaging patients in the first place. Through a Medicare demonstration grant, Washington University shifted away from remote, telephone-based case management toward in-person, community-based case management, an approach they employed specifically to improve the relationship between the case manager and the patient.

Although the initial approach cost more than it saved, the subsequent approach reduced hospitalizations by 12% and per-enrollee spending by more than $217 per member per month, more than offsetting the up-front costs of case management.⁸ Likewise, Mass General's Medicare demonstration project for Care Management for High-Cost Beneficiaries project was designed to ensure that case managers had direct contact with patients to promote the formation of a relationship, which they viewed as key to getting results.⁹

Relationships are key to improving outcomes for patients who have traditionally struggled with more transactional approaches to care management. To better serve this population, the authors' own health care system has looked to models of case management that were developed to serve individuals with severe mental illness. In this article, the authors compare and contrast traditional case management with mental health clinical case management, highlight why mental health clinical case management offers a better path forward for the most complex patients served by Medicaid, and then share details of their own pilot of mental health clinical case management and early impressions from the work.

Traditional Case Management

In 2009, The Robert Wood Johnson Foundation (RWJF) defined care management as a set of activities intended to improve patient care and reduce the need for medical services by enhancing coordination of care, eliminating duplication, and helping patients and caregivers more effectively manage health conditions.¹⁰ At that time, it highlighted 5 keys to success:

In-Person Encounters—phone-based encounters have more limited success

Training and Personnel—primarily Registered Nurses (RNs) who received specialized training and have low caseloads

Physician Involvement—rather than isolation from clinical care teams

Informal Caregivers—individuals who are isolated without support networks struggle to succeed

Coaching—teaching patients and caregivers about management of disease and symptom recognition.

The principles outlined by RWJF certainly make sense when considered individually. Yet, despite the fact that this broad model of case management was widely promulgated, its impact has been limited.^11
–13 The Camden Coalition Trial followed this definition faithfully, and yet failed to show an impact on cost or utilization. Although they had multiple home visits and telephone contacts (7.6 and 8.8 on average), the median total length of engagement was for just over 90 days, with the period of measurement capped at just 6 months—it was time-limited.

Because multiple team members were involved, an emphasis was placed on the accomplishment of tasks (like an education session or connecting to a food pantry) rather than developing a primary relationship—it was transactional rather than relational. A transactional approach is task oriented, focused on resolving a specific need for a patient without accounting for the person as a whole, nor how complex problems may interact with each other. A relational approach is person centered, putting the patient first and developing a relationship to build trust, respect, understanding, and other interpersonal dynamics relevant to their care.

Furthermore, social complexity included having at least 2 of the following 5 conditions: (1) use of at least 5 active outpatient medications, (2) difficulty accessing services, (3) lack of social support, (4) a coexisting mental health condition or an active drug habit, and (5) homelessness. The study analysis noted that their case management design “may be insufficient” for complex cases. The authors agree with that analysis, and propose that there are 3 core barriers that prevent time-limited, transactional interventions from effectively solving complex health and social problems.

The Trust Barrier

Individuals with complex social problems have longstanding issues with trust. Research indicates that most of those who suffer from at least 2 of the social conditions highlighted in the Camden Coalition study have experienced at least 1 significant trauma in their lifetimes, and many of them have experienced multiple traumas.^14

–17 These traumas, often experienced in childhood, establish a framework through which subsequent experiences are appraised, while placing individuals at risk to experience more trauma in the future.¹⁶ Though individuals who experience trauma may or may not meet criteria for post-traumatic stress disorder, a significant consequence of trauma is the loss of trust in members of one's social network as well as the institutions that offer to help those in need.

Even absent formal trauma, people experiencing multiple complex social and/or health problems gradually learn to expect less and less from the individuals and institutions that are supposed to provide support. These diminished expectations, exacerbated by repeated failures of the solutions they were promised would solve their problems, dampen trust in the success of future encounters and call into question the true motives of those offering help.

Impaired trust in individuals frays the support networks that humans must rely on to successfully accomplish life goals. For example, a patient with chronic back pain and hypertension goes to a primary care office and is accused by the doctor of exaggerating his or her symptoms and subsequently denied pain medication. In the future, this individual may be unwilling to seek the medical help they need to manage his or her chronic health conditions.

At a larger level, since various institutions (criminal justice system, the foster care system, and the health care system) break trust—both intentionally and unintentionally—as part of their daily operations, individuals often learn that most institutions cannot be trusted. Furthermore, if a past trauma was perpetrated by individuals or institutions that have the public's trust (eg, parents, health care providers), individuals often learn that trust is a value that cannot be afforded to almost anyone in any situation. This lack of trust could be expressed as a lack of cooperation and a refusal to accept the influence of caregivers.^18,19 These uncooperative individuals could be labeled as “difficult patients,” thereby evoking negative feelings of countertransference in caregivers who in turn reinforce their working narrative that others cannot be trusted.^20,21

The Self-Efficacy Barrier

Along with trust, individuals with unremittent social and health problems have internalized the belief that they are incapable of effecting change in their own lives.²² Even although others may see the cause of those failures as changeable, the negative feedback loop reduces hope and increases despair within the individual themselves. Negative emotions like despair lead to burnout, which reduces motivation to engage in change in the same way that burnout reduces employees' motivation to engage in work.²³ Like loss of trust, loss of faith in self-efficacy can be expressed as hostility or rejection, producing a feedback loop of detachment by caregivers, which in turn reinforces the narrative that the individual is incapable of making the needed change to improve their life.^24
–26

The Complexity Barrier

Individuals experiencing 1 social or health problem, under the best of circumstances, often struggle to solve just that 1 problem. This is not generally a motivational problem—studies have shown that simply mimicking circumstances of poverty, for instance, decreases IQ scores and reduces performance in solving problems.^27,28 As problems pile on top of each other, and as those problems become increasingly complex and difficult to solve, it should be expected that individuals' ability to effectively solve problems declines further.

Moreover, the brain has a limited capacity to toggle quickly between problems,²⁹ making it even more difficult to solve multiple problems in concert. For example, if a patient diagnosed with diabetes has a second chronic condition such as renal failure layered on top, the additional problem adds additional strain to his or her coping mechanisms, his or her intellectual capacity, and to his or her attention. As a result, outcomes should be expected to worsen.^30,31

Yet, this is also not simply a matter of solving an increasing number of stand-alone problems. As social and health problems layer on top of each other, they become intertwined, potentially making individual solutions to each problem less effective. For example, if a single parent with diabetes is also struggling with transportation to medical appointments, solving the transportation problem may not increase adherence to medical appointments if child care is not also addressed.

And as the acuity of problems escalates, individuals may increasingly divert time and resources to solving the most urgent problems and away from more chronic but less urgent problems.^30,32 For example, if someone is struggling with diabetes and his or her electricity being turned off, his or her attention will be disproportionately devoted to the electricity problem, which greatly interferes with his or her quality of life right now, even as diabetes continues to reduce his or her long-term quality of life incrementally.

Solving for the 3 Barriers: A Longitudinal, Relationship-Based Approach to Clinical Case Management

The 3 barriers taken together short-circuit the effectiveness of time-limited, transactional solutions for individuals with the most complex social and health problems. Yet, although overcoming these barriers can seem overwhelming, systems responsible for individuals with severe mental illness have been effectively managing this for several decades.

Mental Health Clinical Case Management is defined by The National Association of State Mental Health Directors as: “the range of services provided to assist and support individuals in developing their skills to gain access to needed medical, behavioral health, housing, employment, social, educational and other services essential to meeting basic human needs, which includes making linkages, as well as providing training for the person served in the successful use of basic community resources and monitoring of overall service delivery.”³⁰

Mental Health Clinical Case Management has historically been organized around 5 core principles^33,34:

Ensuring Continuity of Care—individuals are best served by an ongoing personal relationship with 1 primary case manager who is familiar with the past and present manifestations of their illnesses, their past and present personal functioning, and their social networks.

Leveraging the Case Management Relationship—to overcome deficits of trust, a strong core relationship enables case managers to intervene more skillfully over time and for individuals to be more receptive to case management interventions.

Titrating Support and Structure—as opposed to simply linking patients with resources, case managers provide intensive support and structure early in the course of treatment to help individuals engage in solutions when they have less competence and personal self-efficacy to do so on their own, then gradually pull back as circumstances and self-efficacy improve.

Engaging Flexibly—the frequency, duration, and location of services may fluctuate over time and across individuals with different preferences and needs; some may need visits daily while others monthly; contacts may occur in the home, neighborhood, office or by phone, video, or even asynchronous routes (secure texting and e-mail).

Facilitating Patient Resourcefulness—rather than focusing on needs and deficits alone, case managers must focus on skills and assets—including community support—while continuing to build personal efficacy and capability for individuals to manage their own issues.

At a higher level, Mental Health Clinical Case Management emphasizes the importance of a longitudinal, relationship-based approach—rather than a time-limited, transactional approach—and goes beyond simple coaching by acknowledging that patients with complex situations need more thoughtful, nuanced partnership to help support them while building their own capacity to effectively engage in long-term care.

Applying Longitudinal, Relationship-Based Clinical Case Management to Complex Chronic Disease in a Large Health System

In 2019, University Hospital's health care system committed to building the infrastructure necessary to start delivering mental health clinical case management to Medicaid enrollees with complex chronic disease based on the principles of Mental Health Clinical Case Management; to emphasize its application to individuals with any combination of complex physical and mental illness, the authors have named the intervention Longitudinal, Relationship-Based Clinical Case Management (LRB CCM). Ohio Medicaid reimburses Mental Health Clinical Case Management applied to any individual (referred to as a “client”) with any mental illness or substance use disorder through a linear, time-based billing system.

Although reimbursement requires identification of a behavioral health disorder, the benefit covers work related to any aspect of the client's life that the disorder might impact, including social barriers and chronic health conditions such as diabetes. Reimbursable activities are far ranging, but include engagement, identifying treatment goals, working with the client to identify both intrinsic and extrinsic barriers to reaching those goals, and any activity aimed at helping eliminate those barriers in realizing stated goals, from helping schedule appointments to joining them in applying for social security benefits and to sitting in on a primary care appointment to help the client better engage in treatment of chronic disease.

This study's overarching goals for implementing LRB CCM are simple: (1) to reduce avoidable suffering and improve quality of life, (2) to reduce unplanned care (emergency room visits and inpatient hospital stays, whether for behavioral health or physical health issues), and (3) to reduce costs. The authors chose to focus their first efforts on the ∼150,000 Medicaid enrollees attributed to University Hospitals health system through value-based contracts because the available data for those individuals were the most comprehensive, allowing them to see utilization and cost data both within and outside the system.

Utilizing the database of attributed patients, the authors applied filters for adults with any behavioral health disorder (all ICD-10 F codes) and ranked it based on total cost of care. From that list, the average annual spend was calculated, and the authors focused on patients with prior year spend above the average. Then, those data were sorted by zip code and primary care provider, so that case management caseloads could be built in the smallest catchment area possible. That narrowed the list to ∼5000 individuals.

Current Progress

The IRB determined that the protocol for this study meets the criteria for exemption from IRB review.

Case manager caseloads are capped at 30 unique individuals at a time. The reasoning for this was to maintain a lower number of patients to designate more time to develop a relationship. The number chosen is below the average clinical case management caseload, but greater than intensive care management, distinguishing it as a unique model.

At the time of writing this article—about 5 months after hiring the first case manager—5 case managers (3 licensed social workers and 2 clinical registered nurses) have been hired and the total number of active clients is 81. Demographically, 82% of the clients are female, 44% Black and 56% White. The average age is 45 years, with the majority of clients between the ages of 30 and 50 years. The average total prior-year cost of care for this cohort was $18,328.32, well above the estimated annual average for the target population ($4,321).

Challenges and Lessons Learned

Client engagement and recruitment

This study endeavored to reach out to potential clients proactively rather than waiting for individuals to contact the providers. Initial attempts at recruitment focused on proactive outreach to individuals on the list. Without context however, phone calls were rarely answered, messages rarely returned, and the yield proved to be a very low. A shift was made to soliciting referrals from key provider groups (primary care and mental health providers, and emergency rooms). Networking with providers has proved to be far more effective, but has come with its own challenges.

Being situated in a large health system with a large range of interventions all nominally classified as case management, providers had widely varying notions of what case management is and who it is for. Paired with the small initial cohort of just 5 case managers and 150 total slots, providers often struggled to understand what types of referrals are appropriate.

Because of this conceptual complexity, working more intensely with a smaller number of providers—particularly primary care providers—facilitated solidification of what the service did and which individuals would most benefit from the service. This close alignment resulted in a much higher level of excitement and energy to refer and interact with case management. Like the individual clients served, a strong central relationship between the case managers and referring providers was key to success in generating referrals and in collaborating on care.

Overcoming the stigma and misinformation associated with case management also interfered with engagement. Potential clients were often found to have preconceived notions or experiences of case management and believed it was unhelpful at best and harmful at worst. The case managers learned that language invoking the centrality of the relationship paired with language emphasizing advocacy was highly effective at overcoming this barrier. Trust was solidified primarily through 3 mechanisms: (1) meeting with clients, (2) expressing genuine concern for their well-being, and (3) a focus on meeting the needs identified by the clients.

Case manager identity, culture, and physical disease

A second challenge for the case managers—those with a social work background in particular—has been navigating and adapting to the complexity of the medical diagnoses of the clients. They are deeply familiar with work focused on addressing the social, mental, and overall wellness needs of their clients. However, they lack experience or training in managing to more targeted medical issues. Although their work does not require them to directly manage physical health issues, partnering with clients to effectively engage in treatment of physical health conditions was not only new, but also anxiety provoking.

Their identities had formed and solidified during previous employment in siloed mental health settings where physical health providers were not an integral part of the team, and that, therefore, spent little time focusing on physical health issues, despite the very high burden of physical health disability and death among individuals with severe mental health disorders.³⁵

The need to create a new culture of integrated care had been understood from the very beginning. In service of building this new culture, several strategies were deployed. First, weekly case reviews included a nurse—and later a dually trained psychiatrist/internist—and deliberately focused on clients' physical health issues. This created space for case-based learning about the most common issues related to chronic disease, while also building experience working on and succeeding at solving for issues related to physical health. Second, each case manager had weekly 1:1 meetings with both their RN supervisor and a seasoned counselor.

Although the supervisors focused on different aspects of clinical development, both supervisors proactively, regularly addressed discomfort with managing to physical health concerns, allowing the case managers to both surface their own discomfort and skepticism about working with physical health issues and to identify strategies for overcoming their concerns. Finally, the team culture was emphasized beyond formal meetings, both by encouraging back-and-forth dialogues internally within the team and externally with physical health providers.

Case Studies

The following case studies are in reference to 3 different case managers involved in this program. Pseudonyms have been used for all names mentioned to protect the confidentiality of all parties.

A woman with anxiety and type 2 diabetes has custody of 4 children who she cares for largely on her own. The combination of general anxiety paired with stress related to child care leads her to often miss meals, which in turn has led to multiple emergency department visits for dehydration and dangerously low blood sugar levels. Although she recognized the negative impact of her health on her life, she struggled to believe that she could take control and effectively manage both her own health and the welfare of her children.

Her case manager, Olivia, focused first on building a relationship. Olivia elaborated:

“We laugh together! Having this relationship with this client is really important for her to feel like she has a companion and can just stop and think about her life and escape that stressful environment. It helps to have the time to develop a relationship. This friendly approach has been more effective than simply telling her what she needs to do. You can have all the clinical information you want, but you need to consider the person and what matters to them.”

The case manager has met with this client once a week for 3 months, totaling 11 visits and just under 10 billable hours. Although still early in the engagement phase, the client has experienced steady improvement in her openness to communicate, proactively identifies when she has not eaten in a few days, and verbalizes that self-care is critical to effective parenting and the welfare of her children.

A woman suffers from asthma and chronic obstructive pulmonary disease, while carrying multiple behavioral health diagnoses, including depression, anxiety, bipolar disorder, schizoaffective disorder, and substance use disorder, all stemming from multiple traumas experienced over the course of her life. She also struggles with financial insecurity, lives in low-income housing, has poor vision, and is in constant pain from a degenerative joint disease. She has had little luck resolving social barriers—such as repairing broken plumbing, enrolling in the Supplemental Nutritional Assistance Program, and identifying consistent transportation—on her own, leaving her angry at and mistrustful of institutions claiming they can help, and with little hope that things will get better or that she is capable of turning things around.

The case manager, Jen, began steadily developing a relationship with the client by simply listening to the personal struggles and injustices she has experienced as part of a minority group, while trying to learn about the environmental barriers she faces, such as safety concerns with her neighborhood—all of which are deeply important to the client. By meeting the client where she is at without pushing to focus on topics that feel important, but which she is not ready to discuss yet, Jen has been able to learn what underlying goals the client wants to prioritize. Jen has identified simple fixes—such as transportation to an eye appointment to finally get proper eye glasses—that the client felt drastically improved her life, and started the process of establishing trust.

Meanwhile, Jen has engaged the client's primary care provider to help ensure that the team entrusted with her physical health issues can also most effectively build trust, and engage the client in improving her health. The treatment team had felt frustrated with lack of progress and broken communication, and welcomed the help.

A woman with a history of depression, insomnia, type 2 diabetes, and hypertension, additionally suffers from the rare genetic condition mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes, which has no cure or direct treatment. This condition causes her to be in constant pain and weakness as well as to suffer from stroke-like episodes and gastric problems. Her condition is complicated by opioid dependence that developed from constantly seeking pain relief. She goes to the emergency department about once weekly for help with her discomfort. Despite these problems, she still maintains a job and is independently living in an apartment, demonstrating impressive resiliency.

She lacks trust in the health care system that has failed on multiple levels to relieve her pain or nausea, which has led to reluctance engaging with a case manager. Her case manager—Kevin—has acknowledged the frustration of trying to work with a client who both would so clearly benefit from help and yet who is so reluctant to accept it. His initial instinct was to give up and focus on a different client. His supervisory team, however, worked to help him understand that building trust is a long game, and that each failure is new information learned about what does not work that can help in recalibrating a new engagement strategy. Our responsibility as providers is to never give up, but to adapt until we succeed.

Kevin reoriented his conceptualization of how to engage the client. He plans to work around her schedule and to work with the providers she is most comfortable with through intentional collaborative efforts. He noted that she does have a consistent relationship with her endocrinologist, so Kevin's next step is to join the team at her next endocrinology appointment. As he stated, “This is integrating care in a way that the system can work for the patient. It's a collaborative process and we need to strengthen the system around her, meet her where she is and provide better outpatient care that is non acute and non-emergent.”

Conclusion

Longitudinal, relationship-based clinical case management provides an opportunity to be successful where other interventions have failed. By keeping the caseload small, individual clients receive more focused attention and time with the case manager. By working in the community and meeting the individual where they are at, case managers will both better identify and solve for barriers to care in the clients' natural environment and better identify and enlist support from family, providers, and other members of the community who can have a positive impact on the clients' life.

By leveraging the relationship, not only can case managers improve individual trust, but can also model healthy relationships that improve well-being and happiness. By embarking on the journey of recovery with patients together, case managers can improve self-esteem through early, shared success, and motivate patients to be more proactive themselves. In the Accountable Care Organization, it is routinely shared that change progresses at the speed of trust. This is also true with patients.

To succeed in this work, case managers—whether they are social workers, counselors, or nurses—must not only get comfortable with new content areas, but must also recognize that the depth of closeness and intimacy with clients breaks the boundaries typically set in more traditional nursing, social work, and counseling roles. Although appropriate care must be taken to avoid excessive enmeshment and intrusiveness across that dyadic relationship, this must also be recognized as perhaps the most critical ingredient in driving the success of this model.

Finally, by digging deeply into the lives of individuals who have struggled to engage with systems of care as they are currently designed, case management offers an opportunity to reflect on design flaws within current points of entry and clinical workflows. The authors believe this will offer opportunities to design new clinical pathways and teams that are able to respond to patient needs more nimbly, while being more attuned to managing the whole health for individuals with chronic, complex disease in a highly individualized way that prevents fragmentation of care. To that end, mental health clinical case management then becomes a vessel, not just for driving change at the level of individuals, but also at the level of the health system overall.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

Funding was received from Robert Woods Johnson Foundation; Health Systems Transformation Initiative Grant I.D. Number: 98426.

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