Section 3: Integration and Post-transition Care in the Adult Clinic

Introduction
Systematic reviews have found that a structured transition approach improves outcomes in health, patient and clinician experience, and utilization of care (Schmidt et al., 2020). Clinicians play a key role in the planning, transferring, and integration process, and in assisting youths and young adults within their capacity to attain health literacy, engage in self-management, and navigate the various health systems from which they receive care. Considering the life course is an important factor in implementing a smooth transition from pediatric to adult care.
The American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians (ACP) have jointly recommended a structured approach for both pediatric and adult practices. Called the Six Core Elements of Health Care Transition (HCT), the guidance was created with input from young adults with disabilities and families, as well as HCT experts and professional societies’ representatives (White et al., 2018). A key component of these recommendations is for adult practices to create a welcome and information sheet that includes frequently asked questions about common areas of concern. This information should be incorporated into the planned process within the first few visits to any clinic, assuming the care of young adults with spina bifida (SB).
This section of the Spina Bifida Health Care Transition Toolkit offers adult practices a set of tools to help both young adults and practices feel more comfortable while navigating the new relationship and maintaining continuity of care. Before the first visit, an adult practice should confirm that the pediatric referral practice has sent the following: 
• Medical care plan
• A transfer letter outlining where the young adult is on their journey to self-management, including what education is still needed, as appropriate
• A description of the assistance the young adult needs from their family, including documents such as supported decision-making or guardianship papers
• Key medical information and how the adult practice can contact the pediatric practice for consultation and assistance 
The following tools and approaches can be customized and incorporated into any practice treating young adults with SB. The first section includes information fact sheets about SB. The subsequent sections cover the following:
• Tools for welcome and care policies
• Content suggestions to make the initial visit welcoming
• A medical summary template if one was not sent by the referring clinician
• A template for the Care Team to be completed at the first visit as a guide for the young adult with SB on whom to contact for various medical issues and questions
• A new patient intake template to assist the primary care physician (PCP) during the new patient intake visit for a young adult with SB
This section ends with examples from a sample registry to ensure all young adults receive the needed initial information, and the Transition Readiness Assessment Questionnaire—Spina Bifida (TRAQ-SB) for the clinician to use to assess the needed education on self-care. 
1. For information about SB care:
• See Chronic Condition Fact Sheet and Care Tips for Adults With Spina Bifida.
• See Welcome and Care Policy and FAQs. This tool should be customized to each practice and sent to a young adult and/or caregiver before the visit to inform them about the new adult practice.
• See Neurocognitive and Psychosocial Challenges and Interventions in Young Adults With Spina Bifida below.
2.    Initial visit:
• Offer the young adult a brief tour of the office to introduce them to key personnel.
• Create a plan for the first visit so that any immediate medical or psychosocial needs are taken care of. If everything is not covered during the first visit, arrange for a follow-up visit to continue transfer of care. See sample content here for a welcoming initial visit.
• Discuss the welcome and care policy at the first visit. Ask the young adult if they have any questions. 
• Within the first 1 to 3 visits, update the medical care plan with the new contact information for the primary care and specialists’ offices.
• Create a personalized care team information sheet for the young adult.
• Use the new patient intake document, which can be filled out as a paper form or as part of the electronic medical record. 
• Create a tracking sheet to document each new young adult who goes through orientation and receives information. See sample individual flow sheet or sample registry.
• Create a plan to continue the self-care education, as outlined by the pediatric referral practice, or reassess with completion of a self-care assessment (TRAQ-SB).
  
  

3.1 Information About Spina Bifida Care

3.1.1: Chronic Condition Factsheet and Care Tips for Adults with Spina Bifida
Learn more about typical concerns a person with spina bifida may experience, including detailed information from the Spina Bifida Association Guidelines. 
View Factsheet
3.1.2: Neurocognitive and Psychosocial Challenges and Interventions in Young Adults With Spina Bifida
Unlike individuals without chronic conditions, youth and young adults with SB must navigate multiple transitions to adult health care because they see multiple clinicians (eg, neurosurgery/neurology, urology, orthopedics, primary care). Moreover, the demands of these transitions are particularly challenging for this population because of a host of associated cognitive and psychological challenges and comorbidities. In addition, individuals with SB may have challenges in the areas of transportation, housing, and financial literacy. 
With respect to the cognitive challenges, young adults with SB may have difficulties in the following areas: attention (focusing and shifting attention), executive functions (planning, problem-solving, working memory, goal-directed behavior, and metacognition), language (nonliteral language, inference skills, pragmatic language, and language flexibility), academic skills (math and reading comprehension), and fine motor skills. Some individuals with SB may have learning disabilities, and there is a spectrum of intellectual functioning. This understanding avoids a mismatch between capability and demands, sets up the young adult for success, and celebrates the individual’s efforts and accomplishments to optimize their functioning and quality of life. 
Many young adults with SB may experience psychosocial challenges, including lower levels of health-related quality of life (compared with populations with other chronic health conditions), social challenges (social inexperience, passivity, less peer acceptance, smaller peer networks, and fewer romantic relationships), and delays in the development of autonomous decision-making and self-management skills. 
Interventions are available to address cognitive and psychosocial challenges during young adulthood. The first step is to obtain a neuropsychological assessment to better understand an individual’s specific concerns and profile. Other interventions may include medications, goal-attainment and problem-solving training, use of assistive technologies (eg, smart phones) to enhance planning ability and provide adherence-related reminders, vocational and life-skill training, psychotherapy, and assistance with transportation and financial management. 

3.2 Initial Visit

3.2.1 My Care Team Information Sheet
This form should be completed by the adult clinician during the initial visits with a patient who has recently transitioned to an adult clinician. 
Download Form
3.2.2: New Patient Intake Document for the Adult PCP
The Care Plan outlines diagnoses with overview summaries of common co-occurring conditions in the adult SB population. This table can be used during the new patient intake visit. The codes and summaries can be populated in the problem list or other template functions in the electronic medical record (EMR) and serve as a chronic care plan, medical summary, and reference for documentation of supplies and equipment. Other diagnoses and summaries can be added to the patient’s EMR as applicable. 
Additional Resources
1. Chronic Condition Factsheet for Catheterizable Abdominal Channels
2. Clean Intermittent Catheterization
3. Chronic Condition Fact Sheet- MACE: Malone Antegrade Colonic Enema
4.    Chronic Condition Fact Sheet: Mental Health Screening for Depression and Anxiety 
• PHQ-9 (Patient Health Questionnaire-9)-MDCalc
• GAD-7 (General Anxiety Disorder-7)-MDCalc  
5. Sachdeva, S., Kolarova, M. Z., Foreman, B. E., Kaplan, S. J., & Jasien, J. M. (2021). A systematic review of cognitive function in adults with spina bifida. Developmental Neurorehabilitation, 24(8), 569–582. 
6. Got Transition resources:
• Sample Transition and Care Policy/Guide 
• Sample Welcome and Orientation of New Young Adults
• Sample Medical Summary and Emergency Care Plan
• Sample Individual Transition Flow Sheet
• Sample Transition Registry
• Sample Plan of Care
• Sample Content for Initial Visits with Young Adults
• Sample Health Care Transition Feedback Survey for Young Adults
• Six Core Elements of Health Care Transition 3.0 - An Implementation Guide
7. Bowel Management for Spina Bifida Facebook group
• This Facebook group can be beneficial for troubleshooting outside of the clinic. It is a private group for people living with SB and direct caregivers.
References
• Acuña Mora, M., Luyckx, K., Sparud-Lundin, C., Peeters, M., van Staa, A., Sattoe, J., Bratt, E. L., & Moons, P. (2018). Patient empowerment in young persons with chronic conditions: Psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES). PloS One, 13(7), e0201007. 
• American Medical Association. 2023. Scope of practice key tools & resources. 
• Associates in Pediatrics, S.C. Transition Checklist for Teens. 
• Assurance of Transportation. Medicaid.   
• Beierwaltes, P., Church, P., Gordon, T., & Ambartsumyan, L. (2020). Bowel function and care: Guidelines for the care of people with spina bifida. Journal of Pediatric Rehabilitation Medicine, 13(4), 491–498.  
• Brigance Special Education. 2021. Transition Skills Inventory 2. 
• Educational resources on bladder and bowel products and solutions. Resources for bowel irrigation systems. Coloplast. 
• Enderle-Severson Transition Rating Scale. 2021. ESTR Publications.
• Ferris, M., Cohen, S., Haberman, C., Javalkar, K., Massengill, S., Mahan, J. D., Kim, S., Bickford, K., Cantu, G., Medeiros, M., Phillips, A., Ferris, M. T., & Hooper, S. R. (2015). Self-management and transition readiness assessment: development, reliability, and factor structure of the STARx questionnaire. Journal of Pediatric Nursing, 30(5), 691–699.  
• Fremion, E. J., & Dosa, N. P. (2019). Spina bifida transition to adult healthcare guidelines. Journal of Pediatric Rehabilitation Medicine, 12(4), 423–429.  
• Got Transition-Youth & Young Adults. Health Care Transition Quiz. 
• Holmbeck, G. N., Kritikos, T. K., Stern, A., Ridosh, M., & Friedman, C. V. (2021). The transition to adult health care in youth with spina bifida: Theory, measurement, and interventions. Journal of Nursing Scholarship,53(2), 198–207.  
• Kritikos, T. K., Smith, K., & Holmbeck, G. N. (2020). Mental health guidelines for the care of people with spina bifida. Journal of Pediatric Rehabilitation Medicine, 13(4), 525–534.  
• Mai, C. T., Isenburg, J. L., Canfield, M. A., Meyer, R. E., Correa, A., Alverson, C. J., Lupo, P. J., Riehle-Colarusso, T., Cho, S. J., Aggarwal, D., Kirby, R. S., & National Birth Defects Prevention Network. (2019). National population-based estimates for major birth defects, 2010–2014. Birth Defects Research, 111(18), 1420–1435.  
• Medicaid and CHIP Payment and Access Commission (MACPAC). 2021. Issue Brief: Medicaid and Rural Health. Washington, D.C: MACPAC.   
• National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention, U.S. Department of Health, and Human Services. 2018. Health, United States, 2018: Table 46 Medicaid coverage among persons under age 65, by selected characteristics: United States, selected years 1984–2017. Hyattsville, MD: NCHS.     
• National Center for Immunization and Respiratory Diseases. Immunization Schedules. Centers for Disease Control and Prevention. 2023. 
• PACER Center (2017). Transition Planning Tips for Linguistically and Culturally Diverse Youth with Disabilities. [online] Retrieved May 22, 2023, from    
• Peterson, P. M., Rauen, K. K., Brown, J., & Cole, J. (1994). Spina bifida: The transition into adulthood begins in infancy. Rehabilitation Nursing, 19(4), 229–238.  
• Psihogios, A. M., Kolbuck, V., & Holmbeck, G. N. (2015). Condition self-management in pediatric spina bifida: A longitudinal investigation of medical adherence, responsibility-sharing, and independence skills. Journal of Pediatric Psychology, 40(8), 790–803.  
• Queally, J. T., Barnes, M. A., Castillo, H., Castillo, J., & Fletcher, J. M. (2020). Neuropsychological care guidelines for people with spina bifida. Journal of Pediatric Rehabilitation Medicine, 13(4), 663–673. 1 
• Schmidt, A., Ilango, S. M., McManus, M. A., Rogers, K. K., & White, P. H. (2020). Outcomes of pediatric to adult health care transition interventions: An updated systematic review. Journal of Pediatric Nursing, 51, 92–107.  
• Smith, Z. R., & Holmbeck, G. N. (2021). Cross-lag model of medical responsibility and skills in youth with spina bifida. Journal of Pediatric Psychology, 46(9), 1119–1129.  
• Smith, Z. R., & Holmbeck, G. N. (2021). Factor structure of medical autonomy scales in young people with spina bifida. Journal of Pediatric Psychology, 46(6), 698–709.  
• Spina Bifida Association. Lifespan Bowel Management Protocol. 
• Illinois Guardianship and Advocacy Commission. Supported Decision-making Agreement. 2022.  
• LifeCourse Nexus. Supported Decision-Making. 2020. 
• White, P. H., Cooley, W. C., TRANSITIONS CLINICAL REPORT AUTHORING GROUP, AMERICAN ACADEMY OF PEDIATRICS, AMERICAN ACADEMY OF FAMILY PHYSICIANS, & AMERICAN COLLEGE OF PHYSICIANS (2018). Transitions Clinical Report Authoring Group, American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians (2018). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 142(5), e20182587. https://doi.org/10.1542/peds.2018-2587 
• Wood, D., Rocque, B., Hopson, B., Barnes, K., & Johnson, K. R. (2019). Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida. Journal of Pediatric Rehabilitation Medicine, 12(4), 405–413.