Disparities in Severe Mental Illness

Structural challenges in schizophrenia

Tell me more about these thoughts and visions that you have

I see images of people in my past who have bullied me. I know they’re not there and that these events are not happening now, but I can still hear the mean things they say.

Is there anything you look forward to when you think about the future?

I just hope that there will be a day when I can feel happy again

One of my 16 y.o. patients this past month on the child/adolescent psychiatry unit was newly diagnosed with schizoaffective disorder (depressive type) To me, one of the most unfortunate learnings from taking care of him was how underserved patients with severe mental illness when it comes to long-term disposition options after their hospitalization. In a lot of these cases, patients often do not have enough support for their mental illness at home by family members who are stretched thin (and may even be in dangerous or unsafe environments at the home). As we were working through the discharge options for this patient - I thought the words of our miracle-worker social worker described the gap so well:

These are one of the many unfortunate cases where he isn’t “sick enough” to qualify for a state hospitalization which can accommodate a longer length of stay, but also “too sick” for a residential psychiatric care. Our best option is probably returning him to the community and work with his insurance to qualify him for additional extracurricular services; however there’s a strong chance he comes back to our floor for the third time this year if he has another psychotic episode the family can’t control.

Overview of Schizophrenia

Source: NYTimes

Schizophrenia is one of the more debilitating of the mental illnesses we learn about and see in psychiatry. One of the most hallmark symptoms are the presence of delusions and auditory/visual hallucinations which we label “positive symptoms” in psychiatry vs flattened affect, lack of initiative, reduced speech which we refer to as “negative symptoms”. Many patients, like the 16-year-old I was taking care of, also have mood disorders like depression as hallucinations reinforce negative thoughts and the patient’s sense of reality over time. Feelings of worthlessness, hopelessness, and suicidal ideation are not uncommon - in fact, up to 50% of schizophrenic patients suffer from comorbid depression. This may be one of many reasons why patients with schizophrenia have had an increased risk of dying when compared to the general population, but I was surprised to learn that this disparity has actually been increased in recent decades. 

Social Disparities and Transition to Adulthood

Those with serious mental illness are more likely to struggle with homelessness, poverty and social isolation. They have higher rates of obesity, physical inactivity and tobacco use. Because of these social barriers to reliable housing or social support - nearly half of schizophrenic patients do not receive treatment, and even for those who do there is a long delay because patients do not have the social support in their lives to make regular appointments, initiate medications, etc… Delays in treating psychotic symptoms have been linked to poorer responses to antipsychotic medication down the road. 

Part of the underlying issue is when schizophrenia begins presenting in patients, often without an identifiable trigger. Schizophrenia is typically diagnosed in the late teens and early twenties and thirties which causes unfortunate byproducts in the way that they receive treatment and medication. After the age of 18 in many states, patients grow out of their familial social support structure and interdisciplinary therapy programs (e.g., OnTrackNY for teenagers with psychotic symptoms) that allow patients to receive a relatively normal upbringing in a school environment. 

So even if patients have a supportive family environment they can no longer help facilitate admission and treatment for psychotic episodes. As adults, it is significantly more difficult for caregivers of a patient to help them receive stabilizing treatment without power of attorney or legal guardianship. Qualifying for disability insurance to receive social benefits through Medicaid as an adult is also complicated by setting up formal assessments and state differences

The nature of schizophrenia treatment, which usually requires almost daily treatment (and occasionally regular blood draws to monitor side effects), mean that without support patients relapse on medications often which leads to frequent readmissions and a vicious cycle in and out of psychiatric hospital units. Some studies have shown that the readmission rate of patients with schizophrenia range from 48-67% in the next 1-2 years after discharge.

Racial Disparities, Diagnostic Shadowing, and Therapeutic Pessimism 

 Proportion of Patients With First-Episode Psychosis (FEP) With Health Care Use in 2 Years Before the Index Diagnosis in Each Month, by Race/Ethnicity. Source: JAMA

Intertwined with disparities in social support, racial disparities exist in the screening and diagnosis of behavioral health disorders. The above chart is a summary from this illuminating JAMA Article highlighting the “Association Between Race/Ethnicity and Disparities in Health Care Use Before First-Episode Psychosis Among Privately Insured Young Patients”. Even in this relatively homogeneous sample of individuals with continuous private health insurance, racial/ethnic disparities in diagnoses and treatment are clearly seen before the first diagnosis of psychosis - likely resulting in increased duration of untreated psychosis and poorer long-term outcomes.

Even after patients are diagnosed with severe mental illness… yet another insidious obstacle that patients with severe mental illness face is how providers have been shown to undertreat medical conditions when a patient with psychiatric illness describes their symptoms. This study shows that physicians respond differently to patients with psychiatric illness because of their estimation of pretest probability of disease rather than bias. In other words, when doctors know a patient has depression or has had psychotic symptoms in the past, they are less likely to believe their headache or abdominal pain is related to a serious illness. 

Even though patients with mental illness have the same risk for developing chronic diseases as the rest of the general population, they are much less likely to undergo cardiac catheterization when they show heart attack symptoms. They’re also less likely to get standard diabetes care like blood tests or eye exams, or to be screened and treated for cancer.

In addition to this bias of diagnostic shadowing, providers often are generally pessimistic about whether patients with serious mental illnesses can get better. Lisa Rosenbaum, a cardiologist at Brigham and Women’s Hospital in Boston, articulates this well,

Many of us have internalized the directive to seek a test or procedure only if ‘there’s something you can do about it.’ For mentally ill patients with medical illness, however, this principle often justifies doing nothing.

Policy Trends in Behavioral Health

Source: Center for Healthcare Strategies

From a policy perspective, many of the behavioral health care delivery models focus on carving out behavioral health issues into separate service lines and reimbursement models. From a financial perspective, this may help consolidate and centralize costs, but may also lead to even more silos between medical and behavioral health providers and further stigmatization of severe mental illness.

As this Commonwealth policy recommendation report explains, most states vest responsibility for Medicaid physical health, mental health, and substance use disorder (SUD) services in two or more separate agencies, each with different missions, leadership, expertise, and constituencies. This fragmented administration often leads to misaligned purchasing strategies and conflicting and redundant regulation of physical and behavioral health providers.

Source: Open Minds: Which State Medicaid Plans Carve-out Behaviorial Health Benefits

Here in New York, we began transitioning to a “carve-in” and vertically integrated model in 2015 for patients with severe mental illness through Health and Recovery Plans (HARPs). HARPs will be subject to more extensive and interdisciplinary behavioral health staffing and include recovery-oriented home and community-based services, such as employment and education supports in addition to physical and behavioral health services.

Though this is a great first step, there is still much room for improvement. To me, one of the biggest gaps is the underutilization of home-based and community-based services (HCBS) which can help reduce overall costs of care while providing more accessible and consistent care to these patient populations. 

Since its inception in 2016, HCBS utilization remains extremely limited in HARP plans. According to data from the NYS Office of Mental Health (OMH), as of May 2020, 143,855 members are enrolled in the HARP program statewide. However, less than 25,000 people were assessed, and just over 5,000 actually received HCBS statewide.

The current HCBS enrollment process contains two cliffs where members fall off. The first is a steep drop-off from HARP to Health Home enrollment, where just 27 percent of HARP members are enrolled into Health Homes. The next downslide occurs when moving from HCBS assessment to services received, only 4 percent of HARP members receive HCBS.

Source: Lessons Must be Learned from NYS Experiment in Mental Healthcare Funding

As Melissa Bailey shares from her experience running the HCBS program for children with SED in VT:

The fact that HCBS allows a child to remain in a community setting, hopefully home, but maybe therapeutic foster care and in a community school setting is key. Learning skills and coping mechanisms in a clinical setting like a hospital or residential program and then trying to translate it to real life sets up another potential challenge. Additionally, removing a child from the community where they could have some important relationships and supports and then thinking when they come back 6-12 months later those supports will still be there, is not likely.

Value-based Payments in Behavioral Health

It’s promising to see more of a shift towards value-based payments in behavioral health that reward risk-bearing providers for achieving aligned mental health outcomes. For value-based payments to succeed, we need to start shifting the measurement window for value-based payments from short-term goals of driving down utilization to multiyear analysis focused on longer-term outcomes (which may actually unexpectedly raise early utilization). Other ways that states like NY are shifting towards value-based readiness include setting up value-based contracting entities that identify lead agencies, network providers vs affiliated providers, shared data infrastructure and analytics that consolidate quality oversight, and integration of community and clinical stakeholders.

Moving forward, I hope we can build more collaborative and integrated services for the inextricable commodities our patient populations face across mental and physical health. In addition to incentivizing more interdisciplinary care through policy and reimbursement, we also need more innovation and investment in integrated care models.

Innovation in this Space

One of the most effective care delivery model interventions I’ve come across as I’ve been looking into this space is University of Texas Health Science Center at San Antonio’s transitional clinic which treats up to 1500 patients a year with severe mental illness until they can find regular care. Only 2.5% of psychiatric patients seen at the transitional care clinic return to the ED within 3 months. Creating  an integrated clinical environment to bridge the gap that many psychiatric patients find themselves falling back into immediately after they are discharged from a hospital is an important first step in mitigating the relapse, readmission, and high cost burden.

From a policy perspective, the Certified Community Behaviorial Health Clinical Model provides flexible funding to expand the scope of mental health and substance use services in the community. Since its launch, over 850K patients have been served nationwide across all 224 CCBHCs. In addition to the important crisis support staff that this model facilitates, they also provide much needed integration between mental health providers and criminal justice agencies.

Source: CCBHC Impact Report 2021

Closer to my world of digital health and healthcare VC, my friend Dhruv and EM-nnovator role model Zayed are behind one of the most fascinating companies in this space - firsthand - which employs an interdisciplinary team of firsthand guides from the community who have worked through severe mental illness themselves, community resource guides, and health guides to navigate the medical and social factors surrounding a patient’s care. Having seen firsthand how important these navigation services are in my past experiences as a homeless respite volunteer and the tireless social workers I’ve worked with in our hospitals, it’s incredibly inspiring to see firsthand empowering patients with these high-empathy and well-equipped teams.

Also in this space (thanks to Jon for highlighting) is Akin Mental Health who work on connecting family caregivers of patients with severe mental illness with other families and dedicated guides that teach and reinforce evidence-based skills to better care for loved ones. In drafting this piece, I’ve heard from a friend who struggles with this viscous cycle of relapse and readmission in caring for a brother with severe mental illness. His family tries so hard to keep him on track with medications but on without power of attorney or legal guardianship for a patient > 18, it becomes so easy to miss a dose and relapse into the same gap of a system without sustainable long-term care options for severe mental illness.

Other Psychiatry Disparities

I came across a few other system gaps and issues that I wanted to note during my time in psychiatry that I look forward to discussing in the comments with others who might share an interest!

• Methadone dose schedule waivers - COVID-19 allowed clinicians increased autonomy in modulating patient dose schedules who receive methadone regularly to treat opioid use disorder. It’s shocking to me that pre-COVID-19 we required patients to come into these clinics every day to receive treatment. As an EM provider, interested in looking more into how we can facilitate more efficacious stabilization and long-term treatment of opioid use disorder through buprenorphine micro-dosing vs high-dose buprenorphine induction

• One of my patients was caught in a legal battle throughout his entire stay with us which introduced me to the world of forensic psychiatry where psychiatrists can help the legal system understands concepts of capacity and intent when there are legal charges to bear. Disparities arise, however, when families may not be able to support the medical and legal burdens surrounding a case and patients are often caught with the short stick of both systems.

• Autism has a particularly high burden of cost ($1.2M lifetime) for families and caregivers which may be mitigated by applying additional modalities of developmental therapy that can complement and reduce the hours needed for the gold standard of ABA therapy (typically 20-40h/week) especially for higher-functioning children. Positive Development (an AlleyCorp investment!) has been supporting parents who are interested in these interdisciplinary models.

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Big thanks to Rachael Matulis and Melissa Bailey who published this great overview at CHCS of the policies and models in this space and were generous with their time and expertise to share their thoughtful feedback on early drafts of this piece. Thanks as well to Nathan Kung and Mary Sun as my fellow med student mental health enthusiasts. In my research, I found Dr. Dhruv Khullar’s article in the NYTimes extremely illuminating and it inspired a lot of the arc and investigation into these issues - highly encourage folks to give it a read!

Shout-out to the entire child/adolescent psychiatry unit at Mt Sinai Morningside - was heart-warming to see such an interdisciplinary team across music therapists, psychologists, teachers, dance therapists, social workers, and nurses. A special thanks to Dr. Timothy Rice who has created such a special space and environment for both our patients and the staff as unit director - it’s no surprise why medical students and trainees have such raving reviews about their time rotating through the unit.

Thanks also to Dr. Stephanie Friedman (our other attending child psychiatrist) who I shared a few of my patients with and who supervised and guided me through my first psychiatric intake and suicide risk assessment. A very special shout-out to my triple board resident Divya Hoon who gracefully juggled all the varied responsibilities we had across parents, schools, pharmacies, legal proceedings and demonstrated some of the most memorable displays of empathy and rapport-building in my clinical rotations thus far.

Thank you to Usman, Kim, Pedro, and Laura, the other fellows and residents in our room and high-fives 🙌 to my fellow med students Christine, Kelsey, and Megan who rotated with me through the unit and- learned a lot from all of you and look forward to following your journeys moving forward!

(1) Divya and me on our last day of the rotation (2) some mid-week reflections