The development of a lifetime care model in comprehensive spina bifida care

Abstract

Purpose: To describe the development and implementation of the Children’s of Alabama (COA) Spina Bifida (SB) Lifetime-Care-Model, including standardized care protocols and transition plan. Methods: In 2010, members of the pediatric team at COA began to evaluate limitations in access to care for patients with SB at various stages of life. Through clinic surveys, observations, and caregiver report, a Lifetime-Care-Model was developed and implemented. Partnerships were made with adult medicine colleagues to create an interdisciplinary model at each stage. Since developing this program, it has evolved to include standardized care protocols. Results: Since 2011, there have been 42 prenatal clinics; 114 families received counseling and prenatal care. Of these, 106 have delivered at our center and established care in our pediatric clinic. There are currently 474 patients in the pediatric and 218 in the adult clinics. Conclusions: Our institutional experience suggests that patients with SB benefit from continuity of care throughout their lifetime. This article describes early failures which led to an evolution in approach and implementation of a Lifetime-Care-Model which results in a smooth transition between all phases of life. We hope that other institutions may adapt and build upon it to create programs unique to their specific patient needs.

Development of an evidence-based individualized transition plan for spina bifida

“…1,7,11 In an effort to quantify this observation, we analyzed data from the adult SB clinic, comparing patients who self-identified as "permanently disabled" to those who worked, were in school, volunteered, or reported doing anything regularly outside the home. 3,6 The only variables independently associated with self-identification as "permanently disabled" were lower level of education and bowel incontinence. Furthermore, both of these showed a dose/response relationship, with higher levels of education and less frequent bowel incontinence associated with less "permanent disability.…”

“…Given the importance of bowel continence as a factor in self-perception of disability and overall QOL, 3,6,10 the second goal of the ITP involves the bowel program. Our goal as a program is to ensure that all adolescents and young adults leave the pediatric environment with a working bowel program.…”

“…Over time, we revised our practice plan and developed the lifetime care model (LCM). 3,6,10 The LCM was adopted for the purpose of ensuring that 1) age-appropriate strategies and locations were utilized, and 2) individualized care was organized under a longitudinal paradigm incorporating key components of transition for each state of care throughout life. The LCM centers on dedicated, interdisciplinary clinics under the COA/UAB SB program umbrella for each phase of a patient's life (prenatal, childhood, transition/adult).…”

Growing up with spina bifida: bridging the gaps in the transition of care from childhood to adulthood

“…Children's of Alabama was one of the first centers in the US to develop a successful transitional program for SB patients, termed the "Lifetime Care Model." 24 This program begins the transition process at age 13 years, when a patient's readiness to transition to adult care is assessed with the Transition Readiness Assessment Questionnaire (TRAQ), a validated, quantitative assessment of a patient's ability to manage his/her own care. From this point on, patients are gradually given more responsibility until they reach age 21 years, when they are fully transitioned from the pediatric to the adult clinic.…”

“…These goals should be designed to promote increased patient autonomy and responsibility for management of their own care. 24 A similar transition program has been developed at Gillette Children's Specialty Healthcare, 41 in which outpatient resource nurses were asked to proactively assess SB patients and assist them in developing individualized transitional care plans between the ages of 11 and 17 years, with the goal of increasing independence before the transition from pediatric to adult care. The nurses met with patients monthly to develop, reassess, and modify realistic and individualized goals to increase independence and prepare them to manage their own care.…”