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

Hopson, Betsy; Msha,; Alford, Elizabeth N; Zimmerman, Kathrin; Blount, Jeffrey P.; Rocque, Brandon G.

doi:10.3171/2019.7.focus19425

Cited by 21 publications

(22 citation statements)

References 10 publications

(18 reference statements)

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“…The increased lifespan of patients with spina bifida awakened the medical community about the importance and urgent need of transitioning care from the caregiver to young adult, and from the pediatric Urologist to the adult Urologist. Several transition programs have been introduced throughout the nation that focus on educating the young adults about their disease and need for lifelong medical management [ 40 , 41 ]. Equally important is the involvement of the adult providers in the often-complicated care of these patients as they leave pediatric practices.…”

Section: Discussionmentioning

confidence: 99%

Urologic guidelines for the care and management of people with spina bifida

Joseph

Baum

Tanaka

et al. 2020

PRM

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PURPOSE: The life expectancy for people with spina bifida has increased, thus resulting in greater need for guidelines in urologic care in order to protect normal renal function, to develop strategies for urinary continence, and to advance independence through adult years. METHODS: The English literature was assessed from 2002–2015; greater than 300 publications identified. Case reports and opinion pieces were eliminated leaving 100 for in depth review. Clinical questions were then established for each age group that allowed for focused assessment. RESULTS: There was no Level 1 evidence for any of the defined clinical questions. This resulted in group consensus for all questions throughout all age groups. Guidelines were provided for identifying a symptomatic urinary infection, the role of urodynamic bladder testing and identification of bladder hostility, determining methods of renal function assessment and surveillance, the initiation of continence control, and transitioning to self-care through the teen and adult years. CONCLUSION: Urologic guidelines continue to be based on clinical consensus due to the lack of high level evidence-based research. Further research is required in all aspects of urologic management. While not the “Standard of Care,” these guidelines should be considered “Best Practice”.

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Section: Discussionmentioning

confidence: 99%

Urologic guidelines for the care and management of people with spina bifida

Joseph

Baum

Tanaka

et al. 2020

PRM

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“…Results from 14 youth–parent pairs suggest that families perceived improved transition readiness following the program (Seeley & Lindeke, 2017). Similarly, Hopson, Alford, Zimmerman, Blount, and Rocque (2019) developed individualized transition plans for adolescents with SB that focused on five goals: maximizing education, bowel continence, and goals set by the SB clinic coordinator, parent or caregiver, and patient. Preliminary results suggest that the program was well received by families and may promote adherence with care plans (Hopson et al, 2019).…”

Section: Us‐based and International Interventions: The Transition Tmentioning

confidence: 99%

The Transition to Adult Health Care in Youth With Spina Bifida: Theory, Measurement, and Interventions

Holmbeck

Kritikos

Stern

et al. 2021

J of Nursing Scholarship

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Purpose This article focuses on the transition to adult health care in youth with spina bifida (SB) from the perspective of theory, measurement, and interventions. Methods The purpose of this article is to discuss (a) a theory of linkages between the transfer of medical responsibility from parent to child and the transition from pediatric to adult health care, as mediated by transition readiness; (b) measurement issues in the study of self‐management and the transition to adult health care; and (c) U.S.‐based and international interventions focused on the transition to adult health care in young adults with SB. Findings Individuals with SB must adhere to a complex multicomponent treatment regimen while at the same time managing a unique array of cognitive and psychosocial challenges and comorbidities that hinder self‐management, medical adherence, and the transition to adult health care. Moreover, such youth endure multiple transitions to adult health care (e.g., in the areas of urology, orthopedics, neurosurgery, and primary care) that may unfold across different time frames. Finally, three transition‐related constructs need to be assessed, namely, transition readiness, transition completion, and transition success. Conclusions SB provides an important exemplar that highlights the complexities of conducting research on the transition to adult health care in youth with chronic health conditions. Many transition trajectories are possible, depending on the functioning level of the child and a host of other factors. Also, no single transition pathway is optimal for all patients with SB. Clinical Relevance The success of the process by which a child with SB transitions from pediatric to adult health care can have life‐sustaining implications for the patient.

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“…This questionnaire is a quantitative measurement of a patients' readiness for adult medical care and consists of two domains: skills for self-management and skills for self-advocacy. Some authors have adopted this questionnaire to assess the functioning of their own clinic [11e13, 32,33]. Other questionnaires in use are the Care Transition Measure-15 (CTM-15) [20,34], the SF-36 questionnaire [34], the Ambulatory Care Experience Survey (ACES) [34], the pediatric Quality Of Life scale [6,12e14] or self-imposed questionnaires.…”

Section: Tracking and Monitoringmentioning

confidence: 99%

“…Hopson et al [33] developed a life-time care transition model for the growing number of adult spina bifida patients. Their multidisciplinary team devised a protocol that started at the age of 14 based on the evaluation of their previous care model using surveys, observation, caregiver reports and focus groups.…”

Section: Proposals For Improvement By Established Transitional Care Modelsmentioning

confidence: 99%