The Needs of Pediatric Practices for Policy and Procedures to Facilitate Youth with Special Health Care Needs (YSHCN) Transition to Adulthood.

Patience H White, MD, MA (1), Patti Hackett, M.ed.(2), Renee M Turchi, MD, MPH(3) and Molly Gatto(4) 1. Pediatrics and Medicine, George Washington University School of Medicine and Health Sciences,

Washington, DC, United States; 2. Co-Director, HRTW National Center, Washington, DC, United States; 3. Pediatrics, St. Christopher's Hospitalfor Children, Philadelphia, PA, United States and 4. Associate Program Director, EPIC IC, Media, Pennsylvania, United States

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MethodsAbstract

Objectives

Results

Conclusions

References

1. American Academy of Pediatrics. A Consensus Statement on Health Care Transitions for Young Adults with Special Health Care Needs. Pediatrics 2002; 110(Suppl.) 1304-1306

2. Scal P. Transition for Youth with Chronic Conditions: Primary Care Physicians’ Approaches Pediatrics 2002 110:1315-1321

3. Scal P, Evans T, Blozis S, Okinow N, Blum B. Trends in Transition from Pediatric to Adult Health Care Services for Young Adults with Chronic Conditions. Journal of Adolescent Health 1999; 24:259-264

Design/Methods: A pilot survey based on the policy recommendations ofthe Joint policy transition statement ( see below) was completed by 100% of 21practices (146 physicians and 36 nurse practitioners) in Pennsylvania.The practices had volunteered to participate in developing acomprehensive family centered model of care through the EducatedPractice in Community Integrated Care/ Medical Home Program. Oneknowledgeable person in each practice was the liaison to the EPICIC andcompleted the survey.This is the largest published survey to date of primary care pediatricians on transition issues for their practices on youth with special health care needs.

The survey was based on the following consensus statement:2002 Consensus Statement of the American Academy of Pediatrics, American Association of Family Practitioners, American College Of Physicians (ref. #1):

Ensure all young people with SHCN have:1. Identified health care professional ( HCP) who attend to unique needs in transition-Medical Home2. HCP with a core knowledge and skills, make it a part of in training requirements3. A written health care transition plan by age 144. A continuously current medical summary5. HCP who use comprehensive guidelines for primary care6. Affordable, continuous health insurance coverage

Background: 90% of children with special Health care needs (SHCN) live to adulthood, but are lesslikely than non disabled peers to complete high school, attend college or be employed. Health and health care are two of the major barriers to a successful transition. In 2002 the AAP, the ACP and the AAFP put forward a joint policy statement to guide their members on best practices for transition. A National Survey of CSHCN revealed that only 6.3% of YSHCN ages 13-17 perceived they had received preparation fortransition to adulthood.

Objective: To investigate preparedness of pediatric practices in Pennsylvania to assist YSHCN transition to adult health care.

Design/Methods: A pilot survey based on the policy recommendations of the Joint policy transition statement was completed by 100% of 21 practices (146 physicians and 36 nurse practitioners) in Pennsylvania. The practices had volunteered to participate in developing a comprehensive family centered model of care through the Educated Practice in Community Integrated Care/ Medical Home Program. Oneknowledgeable person in each practice was the liaison to the EPICIC and completed the survey.

Results: Survey results:38% had a stated policy in their practice for when a YSHCN should transfer to an adult physician 66% had identified adult practices for referral. 19% had a policy to discuss legal issues for adulthood beforeage 18. 33% had identified a transition coordinator in the office 29% had care plans for YSHCN supporting transition process; 4% (one practice) used an individualized medical transition plan 29% had a planfor a transportable medical record 62% rated their practice as not having a transition process but were interested in developing one 52% wanted assistance in developing forms/procedures 71% wanted assistancein coding for transition.

Conclusions: The majority of pediatric practices in central Pennsylvania are not prepared to assist YSHCN in their transition to adult health care and are interested in assistance with the process. More studies areneeded to assist pediatric practices with transition of YSHCN to adult health care

Methods

Results:

* 38% had a stated policy in their practice for when a YSHCN should transfer to an adult physician

* 66% had identified adult practices for referral.

* 19% had a policy to discuss legal issues for adulthood before age 18.

* 33% had identified a transition coordinator in the office

* 29% had care plans for YSHCN supporting transition process;

* 4% (one practice) used an individualized medical transition plan

* 29% had a plan for a transportable medical record

* 62% rated their practice as not having a transition process but were interested in

developing one

* 52%wanted assistance in developing forms/procedures

* 71% wanted assistance in coding for transition.

Conclusions: The majority of pediatric practices in central Pennsylvaniaare not prepared to assist YSHCN in their transition to adult healthcare and are interested in assistance with the process. More studies areneeded to assist pediatric practices with transition of YSHCN to adulthealth care.

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TRANSITION SURVEYPractice Name: ___________________________ Date:____________

1. Do you have a transition policy for your practice?(A transition policy states at what age the youth with special health care needs (SHCN) should no longer see a pediatric physician.)______Yes At what age?_______ _______ No

2. Do you have a practice (family or internal medicine) to whom you would refer the youth when they leave your practice? ______ Yes _______ No Name of practice:___________________Why? (Check all that apply):_____Personal relationship_____Reputation_____Location_____Other

3. Is there a dedicated person who coordinates transition activities for the youth with SHCN in your practice? ______Yes _____ No Who? (Check all that apply):_______Nurse_______Care Coordinator_______Parent Partner (s)_______PhysicianOther: _____________________

4. Circle the number that best describes your practice with regards to transition processes. _____Not interested_____Too busy._____We don’t have a transition process, but we are interested in developing one._____We have transition process integrated into the practice.

5. Does your practice have care plans to support transition processes?_______ Yes If yes, what?_______________________________________________________NoIf no, would you or your practice be interested in receiving office forms to support the transition process? _____Yes _____No

6. Does your practice have a list of accessible resources for families to use for transition?_______Yes _______No

7. Does your office currently code for transition?________Yes _______ NoIf no, would you or your practice be interested in coding information for transition? _________Yes _______No

8. What wellness screening tools does your practice utilize for adolescents? (Please list):

________________________________________________________________

9. When youths turn 18 years old, they become legally responsible for their medical decisions. Do you have an office policy to discuss this with a patient and his or her family prior to the patient becoming 18 years old? ______Yes _ ______NoIf yes, what age? ________________

10. What does your practice do to ready your youth with SHCN for transition? (Check all that apply):______Contact an adult health care professional______ Create an individualized transition plan_______Perform a needs assessment for transition readiness of youth_______Perform a needs assessment of transition readiness of family_______Assist youth with SHCN in creating a transferable medical record_______Refer youth to community resources

11. Do you discuss any of the following with the youth and/or their family?_______ Job/Vocation_______Education_______Sexuality_______Insurance planning_______Trust, SSI, or estate planning_______Social activities or recreation _______Long term care plans for when parents are unable to care for the child

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