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Helping consumers add years to their lives

February 17, 2011
by Jack Carney, DSW
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Training case managers and clients to be partners in primary healthcare advocacy

During most of my 16-year tenure as director of FEGS Citywide and Brooklyn Case Management programs, the staff and I always struggled to link our consumers to primary healthcare services. We often asked ourselves a series of questions. For example: Were consumers simply indifferent to their own well-being? Were the barriers to good healthcare for persons with serious mental illnesses simply too great for them and their case managers to overcome? Was it the mental health system and its government and nonprofit providers that were indifferent to consumers’ physical health needs? Most importantly, we asked ourselves what we could do about any of these issues.

Between 2007 and 2009, 18 of the 700 seriously mentally ill consumers on our program caseload died of natural causes. Our consumers’ mean age at time of death was 55 years; which matched the new average life expectancy for seriously mentally ill persons. Half died of cardiac-related illnesses—a cardiovascular death rate 3.2 times higher than the national average. As a result, our sense of urgency to uncover answers increased dramatically.

The Integrated Collaborative Care Management (ICCM) Protocol
We began training consumers and case managers to work together as co-equal collaborators, focused on the risks their medications represented and on the need for integrated primary health and behavioral healthcare. To guide their efforts, we developed the Integrated Collaborative Care Management (ICCM) Protocol, designed to promote the pursuit of primary healthcare as a primary service plan goal by training case managers and clients as healthcare advocates.

At the center of the program was an eight-session, 16-hour training program led by several healthcare professionals. Their focus was the adverse impact of the atypical neuroleptic medications most clients were being prescribed—which often led to these chronic illnesses. Case managers and consumers were instructed to advocate the utilization of the Metabolic Syndrome Monitoring Protocol as the first and essential step for psychiatrists and primary care physicians to determine how their medications were affecting consumers. (Figure 1)

A survey conducted in June 2008 revealed that 19.4 percent of our clients (almost double the national rate) also had been diagnosed with diabetes. Accordingly, they were taught the essentials of diabetes and cardiac disease and their effective treatment—the necessity of primary care and how to receive the best care from their physicians. Essentially, participants were taught to “ask questions and get answers.”

Figure 1:

ICCM Training Program

I Introduction: Training Objectives & Overview of CATIE & NASMHPD Studies
II The Atypical Anti-psychotics: Benefits vs. Adverse Side Effects
III Metabolic Syndrome & Monitoring Protocol: Towards Improved Health Care
IV How to Talk to Your MD: Overview
V How to Talk to your MD: Application via Role-Playing
VI Diabetes: Treatment & Management
VII Heart Disease: Treatment & Management
VIII Primary Health Care: Choices

Field-testing the approach

We began by field-testing the ICCM Protocol and the effects of the training program in a Demonstration Project between October 2007 and April 2008. Eleven case managers, four program supervisors and 24 consumers (all volunteers) participated.
Seeing favorable outcomes, a full-scale expansion was initiated in September 2008. Over the next six months, 33 remaining case managers and 34 consumers participated in three cycles. Shortly thereafter, they were joined by an additional 24 consumers who trained (in vivo) for 12 months. To further test the approach, outcomes of the ICCM group (principally consumers but also case managers) were compared to those of a similar group of 38 consumers and 26 case managers—again, all voluntary participants—from FEGS’s Nassau and Suffolk Case Management programs.

No one in either group received any formal training, but all did participate in quarterly “alumni” sessions where I provided basic instruction regarding the Metabolic Syndrome and the need for primary healthcare. Outcome data were collected over the course of 12 months and by March 2009, all data from both groups had been collected.

Demographic parameters
Despite the voluntary self-selection of the consumer participants, both groups were quite similar when compared along several demographic parameters. The majority were African American females, with a mean age of 47 and mean program tenure of 2.5 years. Additionally, both had similar clinical and treatment characteristics:

  • The great majority in both groups had physical exams within the past 12 months;
  • Nearly all suffered from a diagnosed chronic physical illness: diabetes in the main, followed by cardiac disease and hypertension, for which they were receiving some sort of treatment;
  • Over two-thirds reported past substance use/abuse; 25 percent reported current substance use/abuse, principally use/abuse of nicotine, followed in frequency by use/abuse of marijuana.

Major differences included: