A chronic care model for spina bifida transition

1. Introduction

With advancements in pediatric care, 85% of individuals with SB transition into adulthood [1, 2]. While emerging adulthood is often considered the “age of possibility”, many AYASB are limited by increased chronic condition exacerbations such as skin ulcers and urinary tract infections; emerging health concerns such as anxiety, depression, hypertension, and obesity; decline in mobility; and barriers to engaging in higher education, employment, and independent living [4, 5, 6, 7, 8, 9, 10]. The 2002 Consensus Statement on Health Care Transition for Young Adults with Special Health Care Needs defines the goal of transition as maximizing “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” [3]. Accomplishing this goal for AYASB is complex in that SB affects multiple organ systems, and that there is a broad spectrum of physical, cognitive, and adaptive ability within the population. To maximize their health and independent function, AYASB must learn multiple self-management regimens, obtain community supports for independent living and employment, identify health care providers able to address their particular condition needs, and navigate adult funding resources for medical supplies and care access.

Health care providers for AYASB are tasked with developing patient-centered transition programs that comprehensively address these challenges. Interventions need to be adaptable to various levels of cognitive ability, physical function, and family/community environments. In this commentary, we would like to (1) highlight AYASB transition program needs identified in the literature and within our local community, (2) analyze advantages and limitations of published AYASB transition care models in addressing these needs, (3) demonstrate how the Texas Children’s Hospital (TCH) SB transition clinic used the CCM to develop a comprehensive AYASB transition program, and (4) examine the potential feasibility in adapting this model to other SB clinics.

2. Transition needs for AYASB

The following key elements have been identified as essential for transition programs for adolescents and young adults with chronic conditions such as SB: (1) having a designated transition program to support care coordination and transition to adult-oriented care; (2) beginning transition plans between ages 12–14 that include an up-to-date medical summary, insurance coverage plan, and care provider list; (3) self-management and health care navigation coaching; (4) consideration of the adolescent’s views and preferences; (5) interviewing the adolescent alone for at least part of their visit if developmentally appropriate; (6) identifying adult providers to assume care prior to transfer; (7) flexible transfer timing based on the individual’s cognitive development, physical abilities, social/financial situation, and health status; and (8) ensuring chronic condition management and age-appropriate preventative care throughout transition [3, 11, 12].

With funding from an American Academy of Pediatrics CATCH grant in 2014, AYASB, their families, and SB health care providers from the Houston, Texas metropolitan area participated in focus groups to identify transition care needs for our local community. The following themes informed our transition program development: (1) set expectations for adult SB health trajectory and transition throughout adolescence; (2) improve SB-nuanced adolescent health care in addressing SB comorbid conditions, sexual health, and mental health; (3) implement an adaptable self-management strategy; (4) improve care coordination; (5) systematize case management for funding, decision-making, transportation, education/employment, and independent living resource navigation; and (6) include peer mentorship to support independence development. Seventy-five percent of AYASB participants were of Hispanic/Latino ethnicity and 65% of participants had Medicaid only insurance suggesting that our local population may have unique language/cultural and socioeconomic support needs.

3. Transition models for AYASB

The standard of care for adolescents with SB is to be seen annually in a SB multidisciplinary clinic [13, 14]. Addressing transition planning and self-management during this annual visit is difficult due to clinic scope and time constraints [15]. Various SB transition initiatives have been described such as a one-time transition visit to populate a medical summary and orient patients to an adult care clinic [16], a nurse-lead transition care coordination model for ages 10–18 years to address transition skills and planning within the multidisciplinary clinic with telephonic follow up [17], a two-day transition skills workshop [18], a urology-specific transition clinic where pediatric and adult urologists jointly follow patients to address genitourinary needs and care coordination [19], and an offsite clinic where a nurse practitioner and life coach offer self-care supports pre and post-transition [20]. However, limitations in accomplishing the comprehensive transition needs for AYASB using these models should be acknowledged: self-management coaching is beyond the scope of a single transition visit [16], the nurse-lead care coordination model noted unexplained problems with continence goal achievement [17], the 2-day workshop was not successful in improving self-care skills [18], management of other SB co-morbidities are beyond the scope of a urology-specific clinic [19], and the offsite clinic acknowledged care coordination difficulties with other hospital systems [20].

Recognizing the need to combine transition planning with chronic condition management and self-management coaching for AYASB, the TCH SB clinic in partnership with the Baylor Transition Medicine Clinic (BTMC), an adult medical home where most patients transfer for adult care, developed a SB-specific transition clinic (SBTC) which opened in September 2015. The SBTC is based on the CCM which integrates the essential elements of high-quality chronic disease care: the community, the health system, self-management support, delivery system design, decision support, and clinical information systems [21]. The CCM framework is useful in addressing the complex transition needs of AYASB as it emphasizes using standard processes for assessing self-management and chronic condition status, documenting care plans, and coordinating care while tailoring interventions and care plans to the individual’s needs and preferences. Table 1 outlines how the CCM framework was used to construct the SBTC.

5. The feasibility of the CCM for SB transition

Using the CCM model to incorporate a comprehensive SB transition clinic into an established multidisciplinary SB clinic has several advantages. Visits every three months during the adolescent years facilitate transition care planning, care coordination, regular chronic condition status/self-management assessment and intervention, rapport between patients and providers, and opportunity for patients to practice their care navigation skills. Having an adult provider embedded in the pediatric clinic allows for patients to acclimate to their adult provider in a familiar setting and facilitates collaboration between pediatric and adult care systems.

Disseminating this transition model may have challenges. Other clinics may lack adult providers with SB expertise who can see patients in the pediatric setting. While having nursing staff for care coordination and self-management coaching, as well as, social workers to facilitate case management at each clinic visit is ideal, these resources may not be available in all settings. Also, many SB multidisciplinary clinics have patients who travel long distances and have difficulty returning every three months.

Potential solutions to these barriers are as follows. Internal medicine-pediatric, family practice, physical medicine & rehabilitation, or adolescent medicine physicians, as well as, physician assistants or nurse practitioners may be able to bridge care during the transition years, address adolescent health concerns, and acclimate patients to adult care approaches. Websites, apps, and telehealth technology may aid in facilitating health education, resource referrals, and long distance transition care coordination. Regardless of the clinic model, adult and pediatric interdisciplinary collaboration within local healthcare systems is vital to implementing sustainable transition programs.

6. Conclusion

A SB-specific transition clinic based on the CCM model facilitates the complex chronic care management and transition planning for AYASB. This model is particularly useful for large urban SB centers where patients live relatively close to the clinic and patients benefit from hands-on self-management coaching, care coordination, and case-management. However, all SB centers should consider how best to address the AYASB health care needs described in this article into their local system. Future studies are necessary to compare health care outcomes using the CCM SB transition model versus standard care for AYASB. The Triple Aim framework described offers an evaluation approach.