Medical Conditions with Psychiatric Components:The community feedback period for this idea began on 7/17/2019 and ended on 9/15/2019

What is the problem that needs to be addressed? Please describe how it is related to mental health.
There are many not-so-rare medical diseases that have psychiatric components. In the Orange County, CA psychiatric population there are likely cases of the following based upon “elevator criteria” patterns:

  • Thyroid Dysfunction with a depression/mania component
  • Carcinoid Tumor/Syndrome with a pseudo-manic/psychotic component
  • Post-Stroke with a depression component
  • Marfan Syndrome with mixed associations with a variety of psychiatric disorders
  • Autism disorders

Based upon the referral network issues mentioned in Improving Patient Care and Mental Health Participant Handoff, it is unclear if these patients with orphan diseases/not-so-rare diseases are getting the most from their healthcare system. Many of these diseases have associated, serious medical components that may include cardiovascular disease without modifiable risk factors, connective tissue disorders that make a person stretchy, misbehaving cell disorders that can cause tumors, etc. The mandate for Orange County Behavioral health is psychiatric care only. Thus their care is fractured between (at least) two different health systems. It is unclear how a peer specialist/mentor can provide quality guidance for cohorts of people with not-so-rare medical diseases with psychiatric components.

This project is an educated guess to address a hypothesized need. Treatment for many of these diseases depends upon being diagnosed as a minor – something that clearly isn’t happening for many of the cases encountered. The modern diagnostic criteria/tools may not have existed in the critical period of being a minor. Alternatively, a person may have moved between jurisdictions from a jurisdiction not capabile of diagnosing not-so-rare diseases while the person was a minor.

Why is this a concern for Orange County? What can Orange County and other counties learn from this project?
Getting a patient to the right medical setting is everything. A person who shows up with a headache to their primary care provider, urgent care or an emergency room will get three different subjective/objective/assessment/plan workflows and dramatically different healthcare costs. Putting a patient with a not-so-rare medical disease with a psychiatric component into a psychiatric setting may not be the best idea. At some point, many of these people will develop serious medical complications that may include heart failure, aortic dissection, tumor growth, etc. With only one academic medical center in Orange County that doesn’t have great outreach into the psychiatric community, it is hard to know where to send someone with one of these not-so-rare diseases. Many peer specialists/peer mentors may not know the seriousness of these diseases, may think a person is psychotic when they mention such diseases, or be unaware of how to help someone with these diseases. For sure, meditation and self-care, two of the mainstays of peer programs, are not enough.

These diseases are not-so-rare but rare enough that a provider may only have a few cases in their entire career. That doesn’t allow for much learning nor pattern recognition. Furthermore, a diverse team of medical providers is typically required to verify, understand, (possibly) treat the disease and definitely treat the co-morbidities from the disease.

Learning from the cases of these diseases benefits everyone. It’s not always known who will benefit from medical research/knowledge, but someone almost always does. Understanding infectious diseases led to bo-tox – likely an Orange County best seller drug. Understanding HIV led to treatments for Sickle Cell Anemia. DNA transcription and replication led to the increased availability of insulin and more types of insulin. When a jurisdiction has cases of not-so-rare diseaes it is quite an opportunity to learn.

What is currently being done to resolve this problem in our county and throughout the United States? If applicable: Is it working; why or why not?
Each jurisdiction has its own medical structure. Southern California has more of a free market, fee for service structure and the ability to attract very talented physicians in lucrative, free-standing specialties. This makes care coordination for people with more serious lifelong diseases more difficult.

What is observed from the mental health/psychiatric services is a Psych only approach. Blood isn’t drawn, imaging isn’t performed, and other diagnostic tests aren’t performed. Such things would be outside the scope of care for an Emergency Room or Psychiatrist – the two places a person in a mental health crisis is sent. There is not a publicized, alternate path for those with not-so-rare diseases – the ER/Psych path is likely a waste of time detour compared to what is needed. Based upon the basic issues with discharge planning for a typical psych patient, it is not expected that not-so-rare disease patients get suggestions for the services they will likely need. Such services are likely a medical genetics service, cardiology, neurology, OB/GYN, Tumor Board, vascular surgery, etc. The specific services required to depend upon the specific underlying disease.

What is new or different about this project idea? Please describe how this differs from what is already being done (Question 6). Please list any research that was done on this topic.
It is unclear if the Orange County jurisdiction has the equivalent of a PCMH for the not-so-rare disease cohorts. It is clear that knowing where to send a patient with a not-so-rare disease is not-so-well-known.

What is the project idea? Please describe how this project will operate.
Pre-project research to determine if the services exist in Orange County to address the not-so-rare diseases with psychiatric components. The specific list will be researched over the public comment period and be added in the public comment section. For each disease, consider yourself a patient needing the services required to treat that disease for a somewhat normal life. How many referral networks does it take to get those services and how hard would it be to coordinate care across those services within the Orange County jurisdiction?

The project would be implementing the workflow for addressing the not-so-rare diseases and explicitly communicating which diseases aren’t adequately served in Orange County. At this point Orange County has three choices by the “each person designs their own recovery” model: 1) Implement the infrastructure to support quality treatment/Communicate how to get that treatment; 2) Coordinate permanent transfer of the patient to a jurisdiction that can provide quality treatment in ways that lead to a quality life (i.e. a transfer to homelessness isn’t a good idea and when the patient needs cardiac surgery, getting the patient to the right doctor will expend significant resources as each wrong doctor bills a payer for valueless services); 3) Too bad/So Sad/Tough Tamales (AKA “Its just in your head”). What the project looks like then depends upon which choice Orange County makes for each disease being considered.

This is a choose your own adventure for Orange County. Responses to questions from the Innovation team would probably become specific to which of the three choices is made for each disease under consideration.

What is likely to happen is a division of labor across the jurisdictions of California, each jurisdiction claiming a few of these not-so-rare diseases as a Center of Excellence and relocation of patients to be in proximity to the Center of Excellence. This doesn’t have to happen, but knowing what reality looks like – which isn’t always so easy in Orange County – is a good start.

This project, of course, will follow all criteria of a Prop 63 MHSA Innovations project. This project will require much research and communication.

Additional Information:
Respondent skipped this question


July 2, 2019


This is not an all inclusive list, but instead gives the flavor of what this suggestion is referring.

Ehlers-Danlos Syndrome* – Variable life expectancy depending upon specific type and appropriate treatment
Marfan Syndrome – Normal life expectancy with appropriate treatment
Phenylketonuria* – Normal life expectancy with appropriate treatment and behavior modification
Huntington’s Disease – Life expectancy to approximately age 50
Prader-Willi Syndrome* – Normal life expectancy with appropriate treatment
AngelMan Syndrome* – Normal life expectancy with appropriate treatment

Psychiatric side effects secondary to medications such as CellCept( Mycophenolate Mofetil). Many, many medications fit this list.
Carcinoid Syndrome/Tumor/Cancer – ~80% survival at 5 years after diagnosis with appropriate treatment
Other Neuroendrocrine Tumors of various types
The varieties of Thyroid diseases
The varieties of Parathyroid diseases
The varieties of pituitary/hypothalamic diseases
The varieties of Paraneoplastic Syndromes
Anti-NMDA Receptor Antibody Encephalitis
Cushing Syndrome of all types
Wilson Disease
Hyperbillirubinemias of different types

And so forth…

Children’s Hospital Orange County (CHOC) may be the source of care for this genetic disease during childhood. What happens after a patient becomes an adult is unknown.

Innovations Team

Thank you for your submission. The Innovation team will review this idea and post comments and updates when available.

Klinefelter Syndrome (47, XXY) and other aneuploidies should also be added to the list. These conditions likely have cases in the Orange County Psych population (based upon “elevator criteria” patterns), have crossover with transgender/gender identity and serve as an interesting discussion for why this INN project was proposed.

The earliest article describing Klinefelter Syndrome was in 1947 with many of the initial publications in foreign languages. A pubmed clinical query for diagnosis (narrow limits) for Klinefelter Syndrome yields the earliest article from 2002. An fast, inexpensive screening for Klinefelter Syndrome was published in 2018 ( Wait about 17 years and that fast, inexpensive screening will likely be used widely in the medical community (or something similar/better).

The NIH Genetics Home Reference guesses that 75% of Klinefeter Syndrome cases are never diagnosed (

The next question is “So What?”

Having a diagnosis is important to understand what to expect and for a person to understand why they don’t seem like others. There are no XXY, XXXY, XXXXY, XYY, etc boxes for gender. Klinefelter Syndrome can be mosaic like many genetics conditions and thus vary widely in its expression. Socialization, intelligence, learning and other cognitive functions can be impacted according to basic science sources. Gender characteristics (body hair, physical features) may be absent compared to an XY male – thus gender identity issues may occur. Understanding why can provide framework for a person to go on with life. I will leave it to the reader to research the co-morbid medical issues associated with Klinefelter Syndrome as I wouldn’t trust any source to be accurate due to the very, very, very poor patient selection currently occurring.

Klinefelter Syndrome is 10x more common than Prader Willi according to basic science sources.

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