Transition Care and Independence. Susan Apkon, MD

Transcription

1 Transition Care and Independence Susan Apkon, MD

2 The Shifting Paradigm DMD is no longer a pediatric disease Life expectancy increasing Teens graduating, enrolling in college, moving out of homes, entering relationships Transition is a great problem to have

3 The Paradox in DBMD Typical adolescent Dependent Independent physical emo2onal Adolescent with DBMD Dependent Independent emo2onal Dependent physical

4 Transition: The Goal The goal of transition in health care for young adults with special health care needs is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. Consensus Statement AAP, AAFP, ACP- ASIM 2002

5 Transitions: multifaceted Medical Psychosocial Educational Vocational

6 Transition care Patient-centered Culturally competent Flexible, responsive, coordinated, and comprehensive Promote skills in communication, decision-making, assertiveness, self-care, and self-advocacy Enhance sense of control and interdependence in health care

7 Current State: Challenges Occurs randomly, inconsistently, inadequately Limited staff training Lack of identified staff to coordinate transition Confusion of who is responsible Financial barriers Anxiety from providers, youth, and parents Limited availability of adult providers Adult providers feel unprepared

8 Transition: Key Concepts Transition begins well before age Rate of transition proceeds at different paces for each patient and family Insure a pro-active approach instead of reactive Primary care and specialty care both may require transitions

9 Transition: Action Steps Initiation of transition plan Age Evaluate teen s readiness to assume greater role in self-management assessment tools available Review and update plan regularly Document skills to achieve independence Identification of adult care providers

10 Transitioning: Teen Responsibilities Know the diagnosis and associated medical conditions List medications and side-effects Record keeping Names and contact information of providers, vendors, home care agency Dates of appointments Learn about insurance Meet with doctors and care providers alone Have list of questions to discuss

11 Transitioning: Parent Responsibilities Be aware of the stresses around transitions Encourage autonomous decision-making Education, living situations, health related issues, relationships Initiate conversation about transition plans if provider does not Encourage independence in directed care

12 Transitioning: Pediatric Provider Responsibilities Encourage teens to participate in clinic visit and after visit care Have an office/hospital explicit policy All staff should be trained on implementation Develop referral relationships Provide documentation for transition

13 Transitioning: Adult Provider Responsibilities Develop relationships with pediatric providers Build capacity Develop expertise Begin in residency training Continue throughout career Maintain partnership with pediatric provider Become comfortable in having parent/caregiver involvement

14 Practical Recommendations: the Clinic Visit Encourage teen to prepare for visit in advance Require teen to participate in clinic visit Give them time to answer Redirect provider if they are not speaking to teen Allow teen to meet with provider alone Ok to let provider know you think this is important

15 Practical Recommendations: at Home Insure teen knows medications and why he is taking them Teen should initiate asking for medications Give teen opportunities to make appointments and order medications Have teen call/ medical provider with questions/concerns

16 Summary Transition planning should be explicit, comprehensive, and start early Set expectations for independent management of healthcare needs Skills may need to be developed over time Everyone needs to be involved in transitioning planning