A chronic care model for spina bifida transition

Abstract

Providing comprehensive transition care for adolescents and young adults with spina bifida (AYASB) requires a structured approach to addressing chronic condition management, self-management, care coordination, and health care navigation that is adaptable to the various levels of cognitive ability, physical function, and family/community environments within the population. This commentary (1) highlights AYASB transition program needs identified in the literature and within a local community, (2) analyzes advantages and limitations of published AYASB transition care models in addressing these needs, (3) demonstrates how a spina bifida (SB) transition clinic used the Chronic Care Model (CCM) to develop a comprehensive AYASB transition program, and (4) examines the potential feasibility in adapting this model to other SB clinics. A SB-specific transition clinic based on the CCM model facilitates the complex chronic care management and transition planning for AYASB. Further study is needed to evaluate health care outcomes using the CCM for SB 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].

Table 1

Spina bifida transition clinic structure

Chronic care model domain	Goal	Spina bifida transition clinic action steps
Health system	Create an organization of high	$\bullet$	Collaborate with pediatric and adult providers
	quality care	$\bullet$	Participate in quality improvement initiatives
Delivery system	Ensure effective and	$\bullet$	Define clinic provider roles
design	efficient clinical care and	$\bullet$	Use patient binders to organize care plans
	self-management support	$\bullet$	Prepare providers for clinic using pre-clinic huddles
		$\bullet$	Ensure regular follow-up
		$\bullet$	Ensure subspecialty care, neuropsychological testing, occupational/physical therapy, home health support, mental health services
Decision support	Promote care consistent with	$\bullet$	Participate in the Center for Disease Control SB registry [23]
	evidence/best practice and	$\bullet$	Follow SB healthcare guidelines [24]
	patient preferences	$\bullet$	Use the electronic medical record to communicate with other providers
		$\bullet$	Make care plans with patients and families to individualize interventions and goals
Clinical information systems	Organize patient and population data to facilitate efficient/effective care	$\bullet$	Use the electronic medical record to populate a working medical summary with up-to-date care plans
Self-management	Empower patients to manage	$\bullet$	Discuss transition process and clinic expectations during the first visit
support	their health	$\bullet$	Meet with patients independently for at least a portion of all follow up visits
		$\bullet$	Assess self-management ability, develop goals and step-wise interventions at each visit
		$\bullet$	Support families as self-management coaches
Community	Mobilize community resources	$\bullet$	Encourage participation in school and community activities
	to meet patient needs	$\bullet$	Facilitate referrals to adaptive driving assessment and vocational training supports
		$\bullet$	Review individualized education plans and school supports for post-high school education/employment

4. A SB-specific CCM transition clinic model

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.

Table 2

Proposed triple aim outcome measures

Domain	Measure
Patient experience	$\bullet$	Patient satisfaction of chronic condition care: Patient Assessment of Chronic Illness Care Survey [25]
	$\bullet$	Patient satisfaction of transition care: Health Care Transition Feedback Survey [26]
Population health	$\bullet$	Condition outcomes: Center for Disease Control SB Registry [23]
	$\bullet$	Self-management independence: Adolescent Self-Management and Independence Scale [27]
	$\bullet$	SB-related quality of life: Quality of Life Assessment in Spina Bifida for Teens [28]
Cost/Access to care	$\bullet$	Emergency room and hospitalization costs for potentially preventable SB-related concerns (urinary tract infections, skin ulcers/osteomyelitis, and constipation)
	$\bullet$	Percentage of patients eligible to attend the SBTC who establish are and follow up per the three month schedule
	$\bullet$	Percentage of patients who establish care with the adult clinic within 6 months of their last SBTC clinic visit

4.1 SBTC referral and visit structure

AYASB ages 14–19 are referred to the SBTC during their annual pediatric SB multidisciplinary visit. Until transfer to adult care between ages 19–21, patients follow up every three months in the SBTC, continue annual SB multidisciplinary visits for subspecialty care, and continue well-adolescent checks with a general pediatrician in the community. Between these routine visits, patients are encouraged to call the SBTC nurse for SB-related health concerns (bladder, bowel, skin, etc.) and use their pediatrician for general pediatric concerns (viral infections, etc.). Readiness for transfer to adult care is based on chronic condition stability, optimized self-management independence, insurance status, and determination of decision-making supports.

At each SBTC visit, patients are seen by an internal medicine-pediatrics physician, nurse, and social worker. The physician is also a clinician in the BTMC and thus will continue to be the patients’ physician post-transfer to adult care. The physician discusses the SBTC format and timing for transfer to adult care. The physician also addresses SB chronic condition management, adolescent health concerns, and adult health expectations. The nurse provides care coordination during and between visits for referrals, forms, and medical supplies. The nurse also directs self-management assessment, education, and goal-setting. The social worker provides case-management for insurance/funding, education/employment, decision making, and transportation planning. A parent volunteer and a young adult with SB volunteer provide peer support during visits. At follow up visits, all patients who are cognitively able are asked to meet with the physician independently for at least a portion of the visit. Two half-day clinic sessions are held per week with four patients per clinic. Visits can range from one to three hours depending on the case-management and self-management care needed. Operation costs are incorporated in the outpatient clinic budget and typical comprehensive clinic visit codes are used for billing.

4.2 SBTC assessments

While there is no consensus on best outcome measures for transition program evaluation, the “Triple Aim” framework of patient experience, population health, and cost of care has been proposed as a comprehensive way to examine transition programs for patients with chronic conditions and is the basis for the assessments that we will be using in the SBTC [22]. Table 2 shows the SBTC outcome measures based on the Triple Aim framework.

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.