Patient issues that get in the way of TX adherence: surprising survey findings Sue Bergeson Vice President Consumer Affairs OptumHealth Behavioral Solutions If there is one thing doctors and other professionals know how to do is to relate well to their patients.  But then why are we struggling with adherence issues, especially with mental health treatment?  Sue Bergeson, national mental health consumer leader shares the findings of several very large (N=2000+) surveys that shed some surprising light on the issue of adherence and suggests some simple things that can help enhance adherence and lead to better outcomes.

. Who Am I. . The Art Work. . The Context. . It’s tough out there  Who Am I?  The Art Work  The Context  It’s tough out there  Assume passion and commitment  There is no blame  We are each expert in our own arena

At the end of this presentation, participants will: Learn how to improve patient satisfaction, based on the results of a large patient-based surveys Be able to enhance patient engagement; and treatment adherence in their primary care behavioral treatment; Learn how to optimize treatment results in a limited-visit situation; Be familiar with the role and benefits of a peer specialist .

Communication Challenges  Face to Face Time: Seven Minutes  What would you like to see changed? N=3,662 Spend more time with me; don’t rush through my appointment PCP: second highest response Psychiatrist: highest response OBY/GYN: highest response  Time Before Interruption: ?  Time if Not Interrupted: ? .

Strategy List Allow the two minutes of patient conversation before interrupting, I will leave not feeling rushed and will have the chance to commit more fully to the treatment regime .

Experienced vs Communicated 78% Erratic sleep 77% Heighten mood, 75% Racing thoughts 74% Racing speech, impulsiveness 72% Poor judgment, 67% Irritability 57% Reckless behavior 57% Erratic eating 56% Erratic sleep 36% Heighten mood 43% Racing thoughts 37% Racing speech, Impulsiveness 35% Poor judgment 40% Irritability 26% Reckless behavior 26% Erratic eating

Stigma – Alive and Well Internal Patients were asked about their reactions when they were first diagnosed with depression. A minority reported having negative feelings, including being afraid (33%), embarrassed (26%), angry (21%) or stigmatized (20%). (DBSA Primary Care Survey 2000) However, the vast majority of persons with depression report that when their condition was first diagnosed as depression, they felt relieved to know what was wrong (59%) and glad their condition could be treated (70%). (DBSA Primary Care Survey 2000) Almost three-quarters (71 percent) of the respondents said that they would ask their doctor to prescribe treatment. And few felt that they would lose their job (17 percent), lose friends (17 percent), or feel like they have no one to talk to about it (14 percent). (NDMDA Gallop Pole Public Phone Survey (2002) Just over one-fourth (26 percent) said they would neither worry about these things nor seek treatment. In general, older adults, those with college experience are the least concerned about being stigmatized. Those with the least education are the most concerned (NDMDA Gallop Pole Public Phone Survey (2002) Most survey participants did not consider themselves knowledgeable about depression or bipolar disorder. Thirty-six percent said they were very or somewhat knowledgeable about depression (NDMDA Gallop Pole Public Phone Survey (2002) 50% most frequently associated depression with sadness (NDMDA Gallop Pole Public Phone Survey (2002) While many did understand the need for medicine to treat mood disorders, nearly three-fourths (74 percent) believed that medications change the patient’s personality. In addition, over two-thirds (67 percent) believe the medications are habit-forming. (NDMDA Gallop Pole Public Phone Survey (2002) Concern for a potential diagnosis of depression was much lower than concerns for other major diseases. (NDMDA Gallop Pole Public Phone Survey (2002)

Strategy List Allow the two minutes of patient conversation before interrupting Explain the illness and its importance and impact in consumer words  Address our fear of medication upfront .

Communication Challenges  Explain your Illness to your satisfaction? No: Psychiatrist 47%, PCP 63%  Explain your treatment to your satisfaction? No: Psychiatrist 48%, PCP 57%  51 % Still wanted more information about their mental illness  Less than half of respondents had been given written information  81% who were given information - very useful

Strategy List Allow the two minutes of patient conversation before interrupting Explain the illness and its importance and impact in consumer words Address our fear of medication upfront Provide us with information we can read written in consumer language .

Stigma – Alive and Well External One-fourth believe that people with mood disorders are dangerous, can be easily identified in the work place, and are not able to form and maintain long-term, stable relationships. One out of five believe people with mood disorders should not have children.. One-fourth disagree that people with mood disorders live normal lives and function well and work and at home. All things being equal, about half (48 percent) of those surveyed would not vote for a candidate for national office who had once been diagnosed with clinical depression (24 percent would not vote for the candidate and 24 percent might or might not vote for the candidate). Nearly the same percentage (49 percent) agreed that people with mood disorders are not stable enough to hold positions of authority. In general, older adults, men and the less educated and minorities were more likely to support the stigma associated with mood disorders More females than males believe in the efficacy of medication as well as the ability of people with mood disorders to lead normal lives. Source: NDMDA Gallop Pole Public Phone Survey (2002)

Strategy List Allow the two minutes of patient conversation before interrupting Explain the illness and its importance and impact in consumer words Address our fear of medication upfront Provide us with information we can read written in consumer language Address the shame of mental illnesses directly in conversation .

N= 2,000 – both consumers and providers Primary Care Survey N= 2,000 – both consumers and providers  PCPs 71% say they make joint decisions, but  Only 39% say doctor asked their preferences  PCPs 69% say they tell side effects, but  Patients, only 16% told

When you were prescribed medication, what did your doctor tell you to expect?

Strategy List Allow the two minutes of patient conversation before interrupting Explain the illness and its importance and impact in consumer words Address our fear of medication upfront Provide us with information we can read written in consumer language Address the shame of mental illnesses directly in conversation Explain what the meds will do and what I should watch for .

Relevance  Recovery goals vs. Treatment goals  Psych Nurse example  Feel Bad  Take Meds  Feel Better Feel Hopeless/Worthless  Change Life  Feel Better

Five Stages in the Recovery Process There are times when a person... Impact of Diagnosis Life is Limited …is overwhelmed by …has given in to …the Disabling Power of a Psychiatric Diagnosis Symptoms Stigma …is moving beyond …is questioning Self-image …is challenging Actions for Change Change is Possible Commitment to Change

Five Stages in the Recovery Process Impact of Illness The person is overwhelmed and confused by the disabling power of the illness. The task is to decrease the emotional distress by reducing the symptoms. Life is Limited The person has given into the disabling power of the illness and is not ready/able to make a change. The task is to instill hope, a sense of possibility, and to rebuild a positive self-image. Change Possible The person is beginning to question the disabling power of the illness and believes that his/her life can be different. The task is to empower the person to participate in his/her recovery by beginning to take small steps. Commitment to The person is challenging the disabling power of the illness and is willing to explore what it will take to make some changes. The task is to help the person identify his/her strengths and needs in terms of skills, resources and supports. Actions for The person is moving beyond the disabling power of the illness and is willing to take responsibility for his/her actions. The task is to help the person use his/her strengths and to get the necessary skills, resources and supports.

Strategy List Allow the two minutes of patient conversation before interrupting, I will leave not feeling rushed and will have the chance to commit more fully to the treatment regime Explain the illness and its importance and impact in consumer words Address our fear of medication upfront Provide us with information we can read written in consumer language Address the shame of mental illnesses directly in conversation Explain what the meds will do and what I should watch for Link my treatment to my recovery goals/what I care about .

Consumer Perceptions: What We Really Want family member 1 To be treated with respect Doctor nurse or therapist who listens to my family member (tie) Thorough explanations of what is going on 2 Doctor nurse or therapist who listens to me Treatment that looks at my family member's whole life not just medication 3 Treatment that looks at my whole life not just medication Treatment that builds on my family member's strengths instead of just focusing on the illness (tie) Care that provides hope 4 Thorough explanations of what is going on Options other than hospitals when my family member feels bad 5 Treatment that builds on my strengths instead of just focusing on the illness (tie) Care that provides hope Easier access to the medications my family member's doctor prescribed (insurance won’t pay or wants my family member to take something else first or I can’t afford the medication) Respect, listen, Treatment that looks at my whole life not just medication, Thorough explanations, build on my strengths, hope More suicides that homices and death from war combined DBSA Survey 2004 N=2,000

Link consumer to peer resources John Rush, MD, DBSA support group participation fewer hospitalizations, greater adherence Mark S. Salzer, Ph.D., mental health self-help groups are associated with decreased symptoms, increased coping skills, increased life satisfaction, and greater adherence

Peer Specislits as a Resource Certified Peer Specialists aka Recovery Coaches in Primary Care Settings  Surgeon General – power of peer support  President’s New Freedom Commission 2.2 Role of peers in service delivery  Institute of Medicine Report Increasing role of peers in recovery  Annapolis Coalition Report on the Behavioral Health Workforce Goal One  CMS Acknowledgement as EBP      This is a national issue More suicides that homices and death from war combined

Certified Peer Specialists / Recovery Coaches Roles in Primary Care:  Time: Warm Hand Off (Heart)  Psychosocial Education: Druss/Lorig, Living Successfully (Baby)  Stigma Reduction (Corrigan)  Adherence/engagement: WRAP, Support groups, community engagement, Mood charting, follow up  Whole health, smoking cessation groups, soft exercise, diet, stress management  Post Hospitalization Bridge  Hope 

Certified Peer Specialists / Recovery Coaches  Georgia Research: Overall, peer support consumers showed improvement as compared to control group in each three outcomes over an average of 260 days between assessments Current symptoms/behaviors Skills/Abilities Resources/Needs This is a national issue More suicides that homices and death from war combined

Strategy List Allow the two minutes of patient conversation before interrupting, I will leave not feeling rushed and will have the chance to commit more fully to the treatment regime Explain the illness and its importance and impact in consumer words Address our fear of medication upfront Provide us with information we can read written in consumer language Address the shame of mental illnesses directly in conversation Explain what the meds will do and what I should watch for Link my treatment to my recovery goals/what I care about Encourage participation in free peer support groups Consider hiring a CPS for your practice .

DBSA /NAMI Survey: What we want from our providers: 1. Listen 2. Communicate 3. Compassion (tied) 3. Knowledge (tied) 4. Interpersonal Skills 5. Attitude of Respect 6. Skill 7. Allow enough time 8. Work in partnership with us 9. Don’t just medicate 10. Look at the whole person

I want the health care system to: DBSA Survey 2004 N=2,000 I want the health care system to: Give me hope/seem hopeful about my future Let me make decisions / have some input into my treatment & care Focus on my wellness not my illness Act in a way that shows they believe that I can recover 5. Listen to what I need instead of telling me what I need

Thank You Sue Bergeson Vice President Consumer Affairs, OptumHealth Behavioral Solutions Susan_R_Bergeson@uhc.com