A Transition Protocol at Children s Hospital of Pittsburgh of UPMC

Transcription

1 A Transition Protocol at Children s Hospital of Pittsburgh of UPMC Unoma Akamagwuna MD, Rachel Young CRNP-BC, Amy Houtrow MD, Brad Dicianno MD Pediatric Rehabilitation Medicine University of Pittsburgh

2 3/18/17 A Transition Protocol at Children s Hospital of Pittsburgh of UPMC Unoma Akamagwuna, MD Pittsburgh PA Assistant Professor, Pediatric Rehabilitation Medicine, University of Pittsburgh School of Medicine Clinical Professor, Family Medicine, My School of Medicine, USC I do not intend to discuss commercial products or services. I do not intend to discuss non-fda approved uses of products/providers of services.

3 Introduction To assist in preparing pediatric patients with spina bifida with transitioning, at the Children s Hospital of Pittsburgh s Spina Bifida Program we developed an ongoing quality improvement initiative. The foundation of the program uses the guidelines put forward by Got Transition.org to institute a stepwise transition and education program with targeted visits between ages

4 Our Clinic and Team Our program serves individuals with spinal disorders from birth to age 22 Multidisciplinary clinic including: Physiatry, Orthopedic Surgery, Urology, Neurosurgery, PT,OT, and Social Work Transition team includes: Clinic nurse coordinators, Transition nurse coordinator, adult and pediatric Physiatrists, Social Work Our patients transition to the Adult Spina Bifida Clinic located at UPMC Mercy Hospital

5 Project Aims Establish a sustainable protocol of transition from pediatric to adult Spina Bifida Clinic. Decrease the amount of patients lost to follow up post transition from the pediatric clinic.

6 Clinic Demographics 1199 patients registered in our database 569 are actively followed in SB clinic 329 fall into the transition age (10-22)

7 Transition Data: Past 5 years

8 Methods Start structured transition curriculum Transition Readiness Assessment* Transition Process Assessment Tool* Track patients through transition database Weekly communication with transition nurse *available through gottransition.org

9 Process Measures Current Assessment of Healthcare Transitioning Activities at start of program, 6 month and 1 year intervals Percent of patients seen by Transition Nurse Coordinator Percent of patients that have received transition related documentation including welcome letter, clinic policy

10 Outcome Measures Increased enrollment of new patients to the adult SB program compared to current enrollment Improved patient knowledge about individual medical conditions, medications Improved patient knowledge and confidence in navigating the adult healthcare system

11 Transition Program Vocational Planning Sexuality Diet Transition Community Engagement Exercise Self management At each visit core topics addressed include: diet, exercise, self- management and community engagement. In addition, sexual development, sex education and vocational topics are discussed at developmentally appropriate levels. Patients are also seen by the transition nurse coordinator

12 Welcome to transition (age 10-11) Welcome letter Meet the provider and Transition Coordinator

13 Early Adolescence (age 12-15) Sexual development Self Management Sexuality High risk behavior education

14 Adolescence (age 16-18) Diet Vocational Planning Exercise Transition Sexuality Self management Community Engagement Sexuality high risk behavior education Depression Screen Driving Vocation Planning

15 Young Adults (age 19-22) Diet Vocational Planning Exercise Transition Sexuality Self management Community Engagement Sexuality high risk behavior education Depression Screen Driving Vocation Planning Transition to Adult Clinic

16 Documents at completion of Pediatric Clinic: 1. Medical Summary 2. Education letter for Health Care Providers 3. First Transition appointment Scheduled at the Adult Spina Bifida Clinic

17 Process Measure: Assessment of Transition Activities Baseline Transition Process Assessment Tool was administered in May 2015 with an initial score of 13 Since initiation, our score has now risen to 24 as of February Transition Policy Transition Tracking and Monitoring Transition Readiness Transfer Completion Youth and Family Feedback

18 Outcome Measure: Transition Readiness Assessment N= Age to to to Age

19 Healthcare Privacy 60% of respondents over age 18 are not aware of health care privacy changes at 18 65% of respondents had not discussed their ability to make independent health decisions at age 18

20 Healthcare Navigation 80% of respondents age 18 and above reported that they did not schedule doctors appointments 90% were unaware of how to get referrals to other providers

21 Medical Knowledge 75% or more reported confidence in knowledge of their medical needs, explaining these to others, knowing when to see a doctor, medicines, allergies

22 Importance of Transition Preparation 50% ranked it as very important 44% somewhere between 5 and 10 6% not at all important

23 Health Care Privacy- Caregiver 59% of caregivers responded that their child knew they could see the doctor alone Only 40% of caregivers had discussed the child s ability to make healthcare decisions Only 35% had discussed a plan for supported decision making if needed.

24 Health Care Navigation- Caregiver 75% identified child does not make appointments 68% felt their child did not know how to get referrals to other providers

25 Post Transition. N=8 A number of patients reported inconsistently scheduling their own appointments with their health providers 75% reported they never spoke alone to a provider

26 Discussion The initial results demonstrate that young adults and their parents are able to have some degree of confidence as it regards their medical history. The majority identified a lack of knowledge of navigation of the healthcare system and an understanding of how their autonomy changes as an adult, highlighting that more needs to be done in these areas as part of our transition process. Post-transition data also demonstrated that young adult health privacy was not prioritized.

27 Future Directions Medical- Legal Partnership Focus on: School advocacy, Social Security and Guardianship Transition Readiness Assessments administered and tracked individual to each patient that can be followed per patient and focus placed on areas that are highlighted as weakness Standardization and use of a transition notebook tool Re-evaluation of matriculation rates to the adult clinic

28 Thank you Special thanks to our clinic nurse coordinators Georgia Wiltsie BSAS, RN Renee Bischoff BSN, RN