Betsy Hopson, SB Program Coordinator Children s of Alabama University of Alabama-Birmingham From Transition Challenges to Successes: Establishing a Spina Bifida Adult Care Clinic
Background COA represents only multi-disciplinary SB clinic in the state. Followed approximately 565 patients prior to the development of the transition/adult clinic. Clinic is multi-disciplinary including, neurosurgery, orthopedics, rehabilitation medicine, and urology. Pediatric clinic NOT a SB Program. What s the difference? Recognition of unmet needs. (Treva discussed the 1st outcome of this recognition, I will discuss the 2 nd )
Lifetime Care Model
Challenges Identified >90% of people living with SB are expected to live well into adulthood. Where should adults receive care? Who will provide the care? What services do they need as adults? Why can t patients with SB continue to be seen in the pediatric clinic? Insurance restrictions Anesthesia Licensing Equipment size Conditions unique to adults
Challenges Adults with Spina Bifida Face Intimacy and sexual well-being. Obesity. Cardiac disease. Pregnancy. Mental Disorders. Health-risk Behaviors. Pain Renal Failure Shunt related issues
Previous Method for Transition Transition patients determined by 1 of the 12 providers feeling as if patient could be better served from adult facility. Patients sent to Spain Rehabilitation to be followed by a physiatrist as well as urologist. No care coordination or method for tracking patients after transition. No proper plan for neurosurgical or orthopedic transition Records not forwarded to all offices. Pediatric provider available but limited communication.
Main Goal of Transition The implicit goal of transition to adult care is to maximize lifelong functioning and potential through the provision of high quality, developmentally appropriate health care that continues to adulthood. Sawyer and Macnee: Transition to Adult Health Care for Adolescents with Spina Bifida: Research Issues. Dev Dis Research Reviews 16: 60 (2010).
Challenges to Success Challenges Observed Lack of standardized plan for transition Lack of accurate data to track patients after transition Lack of infrastructure Lack of easy access to a process for timely transition Lack of evidence based methods for adult patients with SB. Method to Address Challenge Developed a plan for transition based on real age not adult-like behavior. Developed method for tracking transitioning patients through use of Webtracker and excel. Began utilizing UAB systems to facilitate ease of access to adult records to aid in care coordination and tracking. Utilized willing participants at Children s of Alabama to facilitate proper transition (Dr. Jeffrey Blount, Betsy Hopson) Began enrolling patients in the CDC project to begin tracking outcomes in adults with SB and began developing plan of care guidelines for adults.
Current Model for Transition Begin discussing and preparing for transition at 19. Provide educational tools to prepare for transition. (copy of transition guidelines, Health Guide for Adults Living with SB) Last visit to Children s clinic in the 20 th year. First visit to adult Spina Bifida clinic in the 21 st year. Members of the pediatric team attend adult clinic. Clinic is multi-disciplinary including, rehab, urology, and neurosurgery. Neurosurgery unique approach.
Transition/Adult Physicians Rehabilitation Medicine Dr. Amie McClain Dr. Danielle Powell Urology Dr. Keith Lloyd Dr. Tracey Wilson Neurosurgery- Dr. Jeffrey Blount Dr. Kristen Riley Dr. Pat Pritchard Dr. Mamerhi Okor
How We Define Successful, Completed Transition Patient attends adult clinic. Patient exhibits and verbalizes confidence in where to go and how to respond in case of emergency. Patient has initial visit with adult neurosurgeon to establish care.
Number of Patients Transitioning 2011 was the first year we transitioned more adult patients than we had new patient births. We are transitioning ~ 3-5 patients/month into the adult clinic.
Results We have transitioned and/or began following 136 patients in the Transition Clinic. 112 patients meet our definition for successful transition. 24 patients have either not completed at least one of the three criteria to be considered transition complete. 4 patients have delivered child. We have collected CDC data on 106 patients. No patient seen in adult clinic has presented to Children s ER. No emergent calls to Ped NSG provider.
Feedback Feedback uniformly positive More confidence in system. Enjoy two pronged neurosurgical approach. Adult Neurosurgeons are more confident in approach. Adult providers feel more equipped to assume care for complex population.
Clinical Observations Depression Pain Lack of motivation Transportation is an issue Only seek healthcare emergently Desire to give back Desire to work is present but finding work is difficult
Results Gender 67% Female 33% Male Insurance 1% Commercial HMO 2.8% VA Spina Bifida Insurance 27.6 % Commercial PPO 39% Medicaid 35.2% Medicare Education/Employment 63.3% high school education or less 12.2% with no advanced education are employed 18.8% have had some college 35.3% with some college are employed 17.7% college degree 63% with college degree are employed
Education, Education, Education Lessons Learned Determining ways to address their specific problems will improve adherence. Collaboration between pediatric and adult care providers create an atmosphere for successful transition. Transition model must be clearly defined and agreed upon by all team members and their families. Qualities of successful transition must be identified and written for clinic team members and patients/families to understand. Continued care coordination is needed for adults. Continuity of care is critical. Quality of life measures are needed.
Continue study of QOL. Next Steps Retrospective institutional review to ascertain adult MMC. needs/demands on adult neurosurgical service. Determine ways to address specific needs. Host graduation party. Add additional clinic day. Develop new research ideas using CDC/ SB EMR data.
Research Conducted in 2013/2014 90 days Project Retrospective study of a decade Shunting rate was 92% total, 93% were shunted in the first 90 days of life Family history Project Surveyed 217 patients 18% had family history of a neural tube defect Sleep Study Retrospective chart review of all patients in clinic from March 1999-July 2013. Out of the 52 patients who received a sleep study, 80% of those patients were diagnosed with sleep apnea 31% fell into the categories of moderate or severe sleep apnea
Research Conducted in 2013/2014 Pediatric Health Related Quality of Life (HRQOL) Prospective cohort of 159 patients Patients with Myelomeninocele (MMC) had significantly lower HRQOL scores than patients with closed defects Among patients with MMC, younger patients had a higher HRQOL score. History of shunting and Chiari decompression correlate with lower HRQOL scores Adult Health Related Quality of Life (HRQOL) Prospective cohort 31 patients Negative correlation between age and emotion Patients followed in the adult spina bifida clinic have significantly lower HRQOL scores than those in the pediatric clinic
Questions??? Contact Information: Betsy Hopson- betsy.hopson@childrensal.org 205-638-5281