Disclosures. Abbott Laboratories: Educational programs; speaker AbbVie: Medical advisory board

Transcription

1 Psychosocial Readiness vs. Chronological Age: How Do We Determine Timing of Transitioning for Our IBD Patients? Sandra C. Kim, MD Co Director, Center for Pediatric and Adolescent IBD Nationwide Children s Hospital Associate Professor of Clinical Pediatrics The Ohio State University College of Medicine....

2 Disclosures Abbott Laboratories: Educational programs; speaker AbbVie: Medical advisory board

3 Goals Psychosocial impact of IBD on children and teens with IBD Transition of care in the young adult IBD patient population Determining when young adults are ready to transfer to adult GI care Measuring effectiveness of transitioning Clinical tools Approaches to transfer of care

4 Children With IBD: Not Small Adults!

5 How Are Our Kids with IBD Coping? Depression present in children with IBD (Szigethy et al and JPGN) disease activity and steroids correlate with depression Majority have mild depression; those with somatic depression usually with active disease/on steroids Lower HRQOL impacts healthcare utilization (Ryan et al Inflamm Bowel Dis) Increased ED and psychology visits, hospitalizations, and telephone calls Quality of life and social interactions impacted (Engelmann et al Child Pysch Human Dev) ~1/3 1/2 children with limitations in activities of daily life

6 School Functioning and Performance Children with IBD have poorer school functioning (Mackner et al J Clin Beh Psych) Only significant differences were in absences (although decreased GPA and QOL, too) Disease factors not significant predictor of poor functioning Predictors for worse educational outcomes (Singh, et al J Peds) Age, gender matched children with IBD to controls Predictors: *Lower SES and diagnosis with mental health issues, but not age at diagnosis, IBD type, steroids, or hospitalizations

7 Psychosocial Development is Delayed in Adolescent IBD Patients Hummel, et al JPGN 5

8 Psychosocial Readiness in Young Adults Self efficacy most important as per adult GI Barriers: poor medical handoff; patient lack of self-responsibility *Psychosocial readiness more important than age Wright, et al Int Med J

9 Psychological Moratorium (Erikson,1956) This period (adolescence) can be viewed as a psychological moratorium during which the individual, through free role experimentation, may find a niche in some section of his society, a niche which is firmly defined and that seems to be uniquely made for him... In finding (one s identity) the young adult gains an assured sense of inner continuity and social sameness which will bridge what he was as a child and what he is about to become.only trial and error can lead to the most felicitous avenues of action and self expression. Adolescence is not an affliction but a normative crisis...

10 Leaving The Safety of Pediatric Care

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12 How Do Healthcare Providers Define Transition? The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care system -Society of Adolescent Medicine

13 NASPGHAN: Transitioning of Care The goal of a transition program is to achieve for each chronically ill patient a continuum of care that includes normalization of social and emotional development and the acquisition of independent living skills. - NASPGHAN Medical Position Statement 2002

14 What is Transitioning? Transition ` Transfer Transfer of care Moving from one provider to another Transition Flexible, dynamic process *Timing important

15 Fundamental Principles of Transitioning Services appropriate for chronological age and development Teens/young adults with chronic illnesses have similar health issues as their peers Growth and development Sexuality Mental health issues Substance abuse

16 Transitioning of Care in Chronic Illness Improved glycemic control, HgbA1C, and decreased DKA episodes are seen in patients with structured transitioning programs. (Cadario, et al Clin Endocrinology; Holmes-Walker, et al Diab Educ) Poor self-management and adherence observed in young adult liver transplant patients. (Annunziato, et al Ped Transpl; J Ped Psych) Improved liver transaminases and immunosuppressant level variability with transitioning program

17 Transitioning in IBD Adolescent IBD patients have low baseline knowledge of disease and available resources (Boamah, et al JPGN; Benchimol, et al Inflamm Bowel Dis) Identify deficits Educational programs Poor correlation between clinician vs. measures - defined health literacy readiness in adolescent IBD patients (Huang, et al Clin Gastro Hep) Lowest correlation in patient-reported self-efficacy in chronic disease management Differences in how clinicians and patients define health literacy

18 Transitioning in IBD Discrepancies in adult vs. pediatric GI MD perceptions of patient readiness (Sebastian, et al J Crohns Col) Inadequate disease knowledge, lack of self - advocacy Insufficient time/clinical resources Successful transitioning requires improved patient education and effective communication (Hait, et al Inf Bowel Dis; JPGN; Leung, et al Inf Bowel Dis) Utilization of checklist Educational tools Engaging patients and families actively Written healthcare transition plan

19 IBD Transitioning: Adult GI Perspective Hait, et al JPGN

20 Loyalty Security Fear Barriers Duration of relationship Views on adult care Loyalty

21 Timeline for IBD Transition To Determine Patient Competency for Care Transfer De Silva and Fishman Inflamm Bow Dis 2

22 Transition Readiness Assessment Questionnaire (TRAQ) Original scale developed for teens/young adults 29 questions Two major domains: self-management and advocacy TRAQ recently validated for young adults with chronic illnesses Ages years age 20 questions Five domains: Managing medications; appointment keeping; tracking health issues; talking with providers; managing daily activities Sawicki, et al J Ped Psych 23 Wood, et al Academic Pediatrics

23 Sample Questions from the TRAQ Managing Medications Tracking Health Issues Do you fill a prescription if you need to? Do you know what to do if you are having a bad reaction to your medications? Do you take medications correctly and on your won? Do you fill out your medical history form, including a list of your allergies? Do you make a list of questions before the doctor s visit? Do you get financial help with school or work? 24

24 TR X ANSITION Scale: Areas of Concentration by Age Age Focus Area years old Type of illness Rx (medications) Adherence Trade/school years old Nutrition Self-management Issues of reproductive health Insurance > 18 years old Ongoing support New health care providers Self-management 25 Ferris, et al Ren Failure

25 Self Management Skills Improve with Age Whitfield, et al JPGN 3

26 CD-ROM to Improve Teen Knowledge Crohn's and Colitis Knowledge Score Pre-test Post-test Post-test > 9 months Boamah et al JPGN Self-directed learning led to improved knowledge: Medications Disease complications GI function

27 UNC T.R x A.N.S.I.T.I.O.N. Score Type of Chronic Illness R x Medications Adherence Nutrition Self-Management Informed about reproductive health Issues Trade/School Insurance Ongoing Adult Support New Health Care Providers Courtesy of M. Kelly, PNP (UNC)

28 Self-Management Handbook for IBD Patients Your IBD Team Getting Started Understanding IBD Your IBD When to Call Your IBD Team Medical Tests Treatments Surgery Adherence Growth and Nutrition Vaccinations Psychosocial Issues Transition of Care Financial Resources Quality Improvement and Research Recommended Websites Drobnic, et al AIBD (abstract)

29 NASPGHAN Recommendations General well-being Psychopathology HRQOL Social Relationships (Family/School) Situational stressors Chronic issues Screening tools CBT Involve mental health professional IBD specific QOL scales Focus on patient report Address all domains (i.e. social withdrawal; interpersonal relationships) Short term: support groups; camp Family coping School performance 504 Plans Mackner, et al JPGN

30 Key Elements To Be Addressed for Optimal Transfer of Care Dedicated health care professional assumes responsibility for planning/coordination Core knowledge and skills required for effective transfer need to be identified Psychosocial issues Transition schedule/educational plan and timeline should be established Medical summary letter generated Adult GI providers identified by pediatric GI team 4

31 Future Directions and Challenges Best models of care: not a one size fits all Variability amongst centers (practice and resources) Transition clinics Multidisciplinary transfer of care meeting (virtual or in person) Transfer of care summary template Determine effectiveness of structured transition Transition readiness and QOL scales Clinical measures: Disease activity; progression to complicated disease Cost effectiveness of dedicated transitioning