MEND: A MULTI-DIMENSIONAL FAMILY SYSTEMS BASED APPROACH TO CHRONIC ILLNESS

1. MEND: A MULTI-DIMENSIONAL FAMILY SYSTEMS BASED APPROACH TO CHRONIC ILLNESS Mia Pandit, PhD, LMFT Daniel Tapanes, MA, LMFT Griselda Lloyd, MS, MFTI Jackie Williams-Reade, PhD, LMFT Loma Linda University Session # E4b/E4c October 17, 2015 Collaborative Family Healthcare Association 17th Annual Conference October 15-17, 2015 Portland, Oregon U.S.A.

2. Faculty Disclosure The presenters of this session • have NOT had any relevant financial relationships during the past 12 months.

3. Learning ObjectivesAt the conclusion of this session, the participant will be able to: • Deepen their understanding of the complex family dynamics that can facilitate or constrain disease management and overall coping • Acquire knowledge about how the MEND program intervenes with families along a spectrum of issues, including an individual’s stress response system and illness meanings to help improve patient and family coping. • Increase their skills in adapting family systems concepts into creative therapeutic interventions

4. Faculty Disclosure The presenters of this session • have NOT had any relevant financial relationships during the past 12 months.

5. MEND: A MULTI-DIMENSIONAL FAMILY SYSTEMS BASED APPROACH TO CHRONIC ILLNESS Mayuri (Mia) Pandit, Daniel Tapanes, Griselda Lloyd, Jackie Williams-Reade

6. Introduction to MEND MEND is an intensive outpatient program that addresses the psychosocial stressors experienced by patients and their families in order to improve overall health related quality of life. Based on an ecological, family systems, and bio-behavorial stress response conceptual framework (see Distelberg et al., 2014) Mastering Each New Direction

7. Prevalence of Chronic Illnesses Approximately 1 in 2 American adults live with at least one chronic illness. Approximately one-fourth of persons living with a chronic illness experience significant limitations in daily activities (WHO, 2009) It is estimated that upwards of 27% of children in the United States have an existing chronic illness (Modi, Pai, Hommel et al., 2012).

8. Chronic Illness Through a Biopsychosocial Lens Chronic Illness is a multi-dimensional issue (bio-psycho-social-spiritual) (Wood, 1993)

9. Chronic Illness and Psychosocial Interventions The adolescent age is an crucial developmental window for children to learn and take ownership of their illness and treatment protocol (La Greca et al., 1995) There is a significant proportion of children that struggle to achieve this developmental milestone, which leads to preventable negative outcomes (Dashiff et al., 2005; Kuhn, Distelberg & France, 2014) Helping these adolescents achieve this milestone requires a multi-systemic approach Engaging the multiple ecosystems around the adolescent can result in improved health, quality of life, better treatment adherence, improved cognitive functioning and improved academic achievement. Without a multi-systemic approach 35 programs nationally have shown positive effects with limited sustainability (Eccelston, et al., 2012).

10. Program Focus Anxiety: Fears regarding illness, worries about getting sick again, life expectancy and academic, career / social limitations. Body Image: Adjusting to bodily changes due to medication side effects including scars, catheters, and growth limitations. Compliance: Difficulty adhering to medication management, diet, or physical restrictions, and exercise recommendations. Depression: Sadness related to adjusting to a life with limitations, ‘survivors guilt,’ and depression related to missed school/work days. Family Issues: Rebellion or resistance with medical regimens, affecting family relationships and functioning. Grief and Loss: Grieving the loss of a healthy body and a life with limitations of action and longevity. Self-esteem: Feelings of not being normal due to illness medications, diet and physical restrictions. Stress: Difficulty with financial circumstances, relationships and social support, and biopsychosocialspiritual health.

11. Video

12. MEND Seven Weeks = 21 days (sessions) Principle Based: Four Phase Model • Unique components: • Mentoring component (increased self efficacy) • Multi-family Group • Inclusion of psycho-education (emotional reactivity)

13. Phase I: Orientation, Assessment, and Language Step One: Orientation and Development of Therapeutic Relationship Step Two: Biopsychosocial Assessment Step Three: Language Learning and Teaching Goal: Orient to MEND, assess patient and family, and learn patient’s Language Phase II: Introspection and Congruence Step One: Mind-body Connections (Interoception) Step Two: Language Development Step Three: Congruence Step Four: Patient Meaning Response Testing Step Five: Systemic Adjustment Goal: Develop introspection/interoception and create congruence for patient and family IV Phases of MEND

14. Phase III: Meaning and Expression of Change Step One: Creating Changes in Meaning Step Two: Systemic Acceptance of Change Goal: Solidify positive illness meaning and expression of change Phase IV: Change Generalization and Reintegration/ Mastery and Maintenance Step One: Change beyond the individual and system Step Two: Graduation Goal: Generalize IV Phases of MEND

15. Case Examples

16. Language Learning • Psychogenic Congruence • Expression • Art • Writing • Verbal process • Normalization of Experience • Peer Culture • Psychoeducation • Mirroring • No Co-authorization • Zero Responses to Identified Power

25. Veteran Case Example

26. Veteran Case Example

27. Veteran Case Example

28. Program Research Efforts • Families Served • 56 Families have participated in evaluation efforts • 89-120 families receive MEND annually • Estimated potential population is 6,000 families within the IE • Cost of MEND • In 2014 the cost was $5,350 • Evaluation Plan • Preliminary Chart Review Study • Creation of a manual • In-depth, within-subject pilot study • Illness experience/perception qualitative study • RCT prospective trial • Dissemination Efforts • 4 peer reviewed papers • 2 international conference presentations • This fall three more conference presentations are planned • 4 Grand Rounds Presentations

29. Initial Chart Review Study • Child Outcomes: • All child outcomes saw a significant decrease in problems associated their chronic illness (with effect sizes ranging between r2 = .18-.64). • These measures ranged from problems in: • Physical Functioning • Emotional Functioning • Social Functioning • Cognitive Functioning • Psychosocial Functioning • Days of school missed (reduced by 80%) Distelberg, Williams-Reade, Tapanes, Montgomery & Pandit, 2014

30. Initial Chart Review Study 90 MEND Improvements in Health Related Quality of Life Healthy Child = 85.34 [84.4-86.2] Healthy Parent = 83.8 [82.8-84.8] Diabetes Child = 77.9 [75.1-80.6] Diabetes Parent = 76.2 [72.9-79.4] 70 50 Total: Child Report 30 Total: Parent Report Baseline Post Test 95% confidence intervals

31. Pilot Study: Outcomes

32. Missed Days of School Pre and Post MEND

33. Pilot Study: Outcomes

34. Medical Expenses Incurred Pre and Post MEND Pre MEND Post MEND Preliminary analysis of 21 families that recently received the MEND treatment. On average, prior to MEND, families incurred $17,066 (sd = $26,318) in medical expenses within a 12 month timeframe. 12 months after MEND the total expenses reduced by 66% or $11,251. Including the cost of MEND (21 IOP sessions = $5,300) the total medical expense reduction of $5,951. Which equates to a 35% reduction of medical expenses in the first 12 months.

35. Pilot Study: Major Effects Reduces re-hospitalizations days from 10 times a month to less then 1 Reduces missed days of school from 12 days a month to less than 2 Reduces missed days of work form 9 days a month to less than 1 Improves fluid cognitive functioning (r2 = .53) Improves child’s physical, emotional and academic well-being (r2 = .24 - .36) Lessen the negative impact of the illness on the family (r2 = .37-.53) There is a cost benefit reduction of 66% in medical expenses

36. Preliminary Results from the Adult Program • 22 families with an identified chronic illness have entered the study • 11 families have graduated the program • 8 families have a 3 month post measurement

37. Preliminary Results from the Adult Program: Anxiety F(3,53) = 3.15, p = .03

38. Preliminary Results from the Adult Program: Depression F(3,53) = 5.84, p = .002

39. Preliminary Results from the Adult Program: General Health T(14) = 2.38, p = .03

40. Contact: Program Developer and Clinical Lead: Daniel Tapanes - dtapanes@llu.edu Principle Investigator: Brian Distelberg: - distelberg@llu.edu Co-Investigator: Jackie Williams-Reade: jwilliamsreade@llu.edu

41. Question and Answer Period

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