Judicious Use of Psychotropic Medications for Youth in Foster Care: Empowering Youth to Guide the Way

Dartmouth College:

Erin Barnett

Youth MOVE National:

Brie Masseli

Rutgers University:

Sheree Neese-Todd

Expert Discussant: Christopher BellonciJudge Baker Children’s Center,

Harvard University

Today’s Outline

• Background: The use of psychotropics among youth in foster care

• Part I: “But if I don’t take it, I can’t get up outta here:” Identifying youth voice in decisions related to psychotropic medications: A systematic and critical review of the literaturesurrounding patient-centered care

• Part II: “This is how the system is designed, but does it work for you?” Advancing Youth MOVE National’s “What Helps What Harms” Policy Initiative

• Part III: “Let Young People be Heard!” The Clarion Call for Shared Decision-making in Treating Mental Health Challenges

• Expert Discussion, Synthesis, Clinical Perspective

• Audience Q&A

Use of Psychotropic Medications Among US Youth

• Autism Spectrum Disorder: 1996-2000, proportion of visits with psychotropic prescriptions increased from 39% to 79% Gerhard et al. 2009

• Multiclass psychotropic treatment: 1996-2007, rose from 14.3% of child psychotropic visits (1996-1999) to 20.2% (2004

-2007) Comer et al., 2010

• Antipsychotics: US prescriptions in children grew 6x between 1993 and 2002, with similar trends observed in Europe Olfsonet al., 2006; Rani et al., 2008; Kalverdijk et al., 2008

• Finally decreasing in young children Olfson et al., 2015

Use of Psychotropic Medications Among Youth in US Foster Care

• Rates: 13% to 43% on 1+ psych med Leslie et al., 2010; Raghavan & McMillen, 2008; Raghavan et al., 2005

• 2-4.5x higher than matched Medicaid counterparts Kutz, 2011; Raghaven et al.,. 2014

• Higher clinical need, but rates vary based on factors other than clinical need Leslie et al., 2011; Raghaven et al., 2014

General Accountability Office 2011 report:

Too much, too many, too young…

and later adding…too long

Monitoring – Atypical Antipsychotics

• VT Medicaid insured youth (n=147), self-report clinician survey• 57% reported ordering serial blood laboratory monitoring Rettew et al. 2015

• 1,023 commercially insured pediatric patients, using insurance claims

• Metabolic monitoring, recommended by AACAP• 5% of clients had all monitoring as recommended at

baseline, 3.4% at follow-up, and .1% at both time pointsDelate et al., 2014

• Survey of prescribing pediatric clinicians (n = 1314)• < 50% reported ordering lab work on 3+ occasions McClaren et al., 2017

The Federal Mandate and Response• Require state child welfare agencies, in collaboration with Medicaid

and others, to develop a “plan for ongoing oversight and coordination of health care services,” including psychotropic medications, for any child in a foster care placement Section 422(b)(15) of

the Social Security Act 42 U.S.C. 622(b)(15)

• Many government, academic, and advocacy organizations have issued memorandums, recommendations

• Nearly all state child welfare agencies have developed a policy

• BUT, policies are criticized for being under-developed, non-transparent, and lacking accountability measures Noonan & Miller, 2014

• And not patient-centered Barnett et al., under review

Dartmouth: Systematic and Critical Review of the Literature

• Purpose: Identify the experiences/perspectives of youth in/formerly

in foster care, caregivers, direct service providers regarding the patient-centered use of psych meds

• Searched 4 databases and gray literature• 268 peer reviewed publications initially retrieved

• 48 gray literature studies/reports initially retrieved

• 8 studies met eligibility criteria, all of which were qualitative• 6 examined youth/former youth perspectives

• Quality appraisal (CASP) scores ranged from 3 to 9 (of 10)

Erin R. Barnett, PhDa, Milangel T. Concepcion-Zayas, MD, MPHa, Yaara Zisman-Ilani, PhDb, Christopher Bellonci, MDc (under review)

Synthesized findings from 8 studies

• Pervasive lack of knowledge about medications, side effects, and monitoring, and uncertainty surrounding medication effectiveness.

• Little voice in decision-making

• Imbalanced power between providers and patients

• Weak therapeutic relationships

• Systemic barriers contributed to many concerns

Trusting relationships with providers and autonomy in decisions were discussed as most helpful!

JUDICIOUS USE OF PSYCHOTROPIC MEDICATIONS

FOR YOUTH IN FOSTER CAREEMPOWERING YOUTH TO GUIDE THE WAY

Patient Centered Outcomes Research Institute

ADVANCING YOUTH MOVE NATIONAL’S “WHAT HELPS WHAT HARMS” POLICY INITATIVE“THIS IS HOW THE SYSTEM IS DESIGNED, BUT DOES IT WORK FOR YOU?”

THE CLARION CALL FOR SHARED DECISION - MAKING IN TREATING MENTAL HEALTH CHALLENGES “LET YOUNG PEOPLE BE HEARD!”

ACKNOWLEDGEMENTS

Thank you to the Patient Centered Outcomes Research Institute (PCORI).Research reported in this presentation was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (IHS-1409-23194).

The Youth MOVE National What Helps What Harms (WHWH) Policy Initiative was lead by Project Director Jessica Grimm of Braveheart's MOVE New York.

STAKEHOLDER ENGAGED, PATIENT CENTERED RESEARCH

Rutgers PCORI Foster Care Alumni Team

Cassandra Simmel, MSW, PhD

Sheree Neese-Todd, MA

Mary Kate Marasco, MPH

Youth MOVE National Leadership team

Johanna Bergan, BS

Brie Masselli, MA

Kristin Thorp, BS

UNDERSTANDING ENGAGEMENT

PCORI Engagement Principles

Reciprocal Relationships

Co-learning

Partnership

Transparency, Honesty and Trust

Youth MOVE Model for Engagement

Builds upon peer connections & unites voices

Promotes learning & growth

Developed partnership and collaboration

Identifies service and support gaps

Seeks to improve access and quality of services

PCORI Foster Care What Helps What Harms

Both studies asked

similar questions,

with different

approaches

YOUTH MOVE NATIONAL: POLICY INITIATIVE

WHAT HELPS WHAT HARMS (WHWH)

Chapter driven approach & replicated nationally

United the voices & causes of youth nationally

Addressed six pillars

Education, Community, Mental Health, Foster Care/Child Welfare, Juvenile Justice, and Employment

Identified 3 over arching themes

Peer Support, Cultural Competency, Youth Voice

Information gathered was utilized to drive future YM partnerships and priorities to ensure youth voice was included in the change process

www.youthmovenational.org

YMN: WHAT HELPS WHAT HARMS

Methods

Youth Driven Forum & discussion process

~14 chapters engaged

~ 6 pillars

* Mental Health

* Foster Care/Child Welfare

Pillar Themes

Need to establish trusting relationships to improve decision making

Knowledge gaps related to available services and medication side effects

Importance of youth voice to improve systems of care

www.youthmovenational.org

COMPARATIVE EFFECTIVENESS OF STATE PSYCHOTROPIC

OVERSIGHT SYSTEMS FOR CHILDREN IN FOSTER CARE

Project Overview

Aim 1

• Review of state oversight mechanisms

• Key informant interviews with state policymakers

Aim 2

• Gather perspectives of individuals from multiple stakeholder groups through individual and group interviews

Aim 3

• Compare effectiveness of state policy interventions through state data analysis

AIM 2: METHODS

• Young adults with lived experience in SOC• Foster Care Alumni

• Antipsychotic Medications

Stakeholders

• Leverage organizational membership

• Utilizing Social Media Recruitment

AIM 2: METHODS: A TEAM APPROACH

• Web-based groups interviews

• Deliberate discussions using vignettes

Data Collection

• Young adults with complex lives

• Several steps to complete participation

Challenges

QUALITATIVE RESEARCH IS ITERATIVE

COLLECT PEOPLE’S PERCEPTIONS: “THE LIVED EXPERIENCE”

PCORI Team Reviewed and Coded Transcripts

Keeps us “open and honest”

Summarized Recurring Themes

Harness the Power of a Personal Experience

NOTABLE THEMES

Shared Decision Making is Difficult in Clinical Encounters

Informed Decision Making is Challenging

Some Environments Promote Shared Decision Making

Youth Involvement and “Voice”

SHARED DECISION MAKING IS DIFFICULT IN CLINICAL

ENCOUNTERS

Shared and Informed Decision Making

Alumni Participants emphasized the importance of shared decision making and often stated that youth must be well informed to make their own decisions.

Alumni discussed how a lack of comprehension by youth about their diagnoses and treatment options prevents shared decision making.

“I remember when my psychiatrist was talking to me about meds, um, it was kind of daunting. In the fact that I felt pressured, like I almost didn’t have a choice whatsoever.”– Alumni Participant

INFORMED DECISION MAKING IS CHALLENGING

“I think that there just needs to be way more emphasis on explaining like even if in the interim before any decisions are made that would give youth in foster care more control over medication and prescription and things like that but even before that I

think there needs to be emphasis on explaining what the medication is and

what it does and what it’s for.”– Alumni Participant

“…I had no idea of what the doctors were saying. I had no

idea what the big terms were.”– Alumni Participant

Informed decision making requires understanding complicated ideas.

IMPORTANCE OF TRUSTED ENVIRONMENTS

Environments to Promote Shared Decision Making

Alumni told us different kinds of encounters promote information exchange and make for better shared decision making.

Environments that promote shared decision making include:

Employing a team approach

Trusting relationships

Having adequate advocates for youth

“I think in the end it’s like not one real sole

person can say what’s going to be the best

practice… I mean in some cases, kids are

going to be able to make really good

decisions and some cases they are not.

Some cases parents are, um, biological

parents, foster parents, group homes or even

the workers… I mean like I guess everything

is checks and balance and it’s kind of hard to

decide or figure out how you check and

balance that.” – Alumni Participant

A TEAM PROCESS OFFERS OPTIONS AND SUPPORT

“I think that there just needs to be way more emphasis on explaining like even if in the interim before any decisions are made that would give youth in foster care more control over medication and prescription and things like that but even before that I think there needs to be emphasis on explaining what the medication is and what it does and what it’s for.” – Alumni Participant

“And as far as anything else,

um, services because I feel

like, you know, you can't

really make a decision on

anything with just one or two

people or three people, you

need like a team.” – Alumni

Participant

“I would think her right

is to say no more… I

would think it’s a basic

human right to be able

to say no.” – Alumni

Participant

TIME IS NEEDED TO THINK THINGS THROUGH

“So I personally think that the youth should work in conjunction with the doctor, kind of like a psychiatrist... So just having like a full disclosure about everything about it, um, and the doctors, from when I was in care, were under pressure to push certain kinds of meds. So I actually kind of retract what I say about having, um, about the doctor having the final decision, I think it really should be with the young person and the doctor if the caregiver can't even be part of the conversation.” – Alumni Participant

“NOTHING ABOUT US - WITHOUT US”

Youth Involvement and Voice

Youth voice came up frequently as a priority. Alumni Participants felt strongly that youth should be heard and involved in any decision making process. Without youth voice, there cannot be shared decision making.

Youth voice came up frequently as a priority. Alumni Participants felt strongly that youth should be heard and involved in any decision making process. Without youth voice, there cannot be shared decision making.

Respecting youth’s right to refuse treatment.

“I mean just having the youth involvement is big. Like if you are considering putting them on medication discussing the side effects and everything with them, like, ‘hey this is what this is, this is what could happen,’ and just having them informed.” – Alumni Participant

LEVERAGING FINDINGS FROM BOTH STUDIES

How to better structure services at

systems level

How to better promote the voice of youth at every

stage of the process

Better

Outcomes

for All

CONTACT INFORMATION

Sheree Neese-Todd

SNeeseTodd@IFH.Rutgers.edu

Brie Masselli

BMasselli@YouthMoveNational.org