Transitioning Adolescents and Young Adults with Spina Bifida to Adult Healthcare: Initial Findings from a Model Program

Sawin, Kathleen J.; Rauen, Karen; Bartelt, Tera; Wilson, April; O'Connor, R Corey; Waring, William P.; Orr, Merle R.

doi:10.1002/rnj.140

Cited by 62 publications

(22 citation statements)

References 20 publications

(21 reference statements)

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“…We have found that the needs of the transition population are complex, multi-factorial and varied. They center on themes of autonomy, mutual respect and expectations that the patient will take on greater independence in their own care 4,20,23 . The process for establishing an adult clinic not only includes identifying a suitable location and adult providers but also recognizing that the best care is delivered in a paradigm that emphasizes holistic lifelong care 4,15,22 .…”

Section: Discussionmentioning

confidence: 99%

“…The capability for transition must be developed over years and involve the patient, family, and care team. In this context, the logistical transfer of care from the pediatric to the adult environment is triggered by an actual chronological age but occurs as a culmination of a carefully developed incremental process 20,23,30 .…”

Section: Discussionmentioning

confidence: 99%

“…The need for transitional programs has been recognized but remains limited in SB 12,16–19 . Additionally, only scant information exists to guide practitioners about the longitudinal needs of this patient population 11,17,20–22 . This knowledge barrier creates obstacles to accessing quality care for men and women with SB 4,23,24 .…”

Section: Introductionmentioning

confidence: 99%

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

Hopson

Rocque

Joseph

et al. 2018

PRM

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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

Hopson

Rocque

Joseph

et al. 2018

PRM

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“…Transitioning is a challenging time for adolescents, their families and also health care providers (19). Given that adolescence brings with it many challenges of its own (leaving home, moving to university, relationships and starting careers) preparation for clinical transition should commence early in adolescence (20). Inadequate transitioning affects up to 60% of adolescents with complex health needs (21) and the quality of transition processes can vary according to the underlying health issues and the specialists involved (22).…”

Section: Discussionmentioning

confidence: 99%

“…In our survey, one respondent commented that since commencing an adult spina bifida clinic 11 years previously, the two top issues encountered were urological and hydrocephalus-related. A model program for transitioning patients with spina bifida supports the notion that transition should be a multidisciplinary process involving social workers, physiotherapists, nurses, community paediatric and adult providers as well patients and their parents as well (1,20). Multidisciplinary clinics exist in the paediatric setting, but may be more fragmented in the adult sector.…”

Section: Discussionmentioning

confidence: 99%

Transitioning in hydrocephalus: Current practices in Canadian Paediatric Neurosurgery centres

Singh

McDonald

2018

Paediatrics &Amp; Child Health

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Introduction: Advances in perinatal care in the developed world have resulted in more children living into adulthood with complex chronic health conditions. Transition is a process to improve and maximize the functional status of adolescents via the provision of adequate and appropriate health services in adulthood. This process is frequently disjointed, fragmented and inconsistent and inadequate transition increases morbidity, hospital admissions and urgent interventions. Ten thousand children are diagnosed with hydrocephalus annually in North America. Most survive to adulthood yet there are few transitioning programs and little research data on successful programs for this population. Methods: An email survey of paediatric neurosurgical centres in Canada was carried out to establish current transition practices and attitudes for adolescents with hydrocephalus. Data were analyzed descriptively. Results: Eleven out of 12 centres responded. The age of transition ranged from 16 to 18 years. Four centres have access to a dedicated Adult Hydrocephalus Clinic. Referral practices vary between centres and we highlight inconsistencies in care to this cohort of patients in Canada. There is little satisfaction among neurosurgeons with current transition arrangements in Canada. Several suggestions were made on how to improve this process. Conclusion: We recommend research into the needs of patients with hydrocephalus in order to formalize appropriate standards for transitioning patients with a view to developing national guidelines to standardize the transition process. This will require input from patients, families and the wider medical and allied health professional groups.

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Analysis of Self-Management and Transition Readiness Instruments for Clinical Practice

Sawin

Margolis

Bookman

et al. 2019

Transition From Pediatric to Adult Healthcare Services for Adolescents and Young Adults With Long-Term Conditions

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Transitioning Adolescents and Young Adults with Spina Bifida to Adult Healthcare: Initial Findings from a Model Program

Abstract: SBTP is well-received by participants and their parents and may be useful model for other chronic health conditions.

Cited by 62 publications

References 20 publications

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

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

Transitioning in hydrocephalus: Current practices in Canadian Paediatric Neurosurgery centres

Analysis of Self-Management and Transition Readiness Instruments for Clinical Practice

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