What Do We Really Know About the Transition to Adult-Centered Health Care? A Focus on Cerebral Palsy and Spina Bifida

Binks, Jessie A.; Barden, Wendy; Burke, Tricia A.; Young, Nancy L.

doi:10.1016/j.apmr.2007.04.018

Cited by 227 publications

(231 citation statements)

References 135 publications

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“…1,5,8,9 Interestingly, 39% of urologists suggested that the transition process should begin at the age of 18 or older. In most Canadian centres, this is when the transfer of care is expected to have already taken place from pediatric care.…”

Section: Discussionmentioning

confidence: 99%

The transition process of spina bifida patients to adult-centred care: An assessment of the Canadian urology landscape

Wajchendler¹,

Anderson²,

Koyle³

2017

CUAJ

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Introduction: Due to medical advances over the past three decades, the vast majority of children with spina bifida (SB) now survive into adulthood. As a result, there is a need to implement a well-defined urological transition process for these patients from the pediatric to adult environment. The objective of this study was to identify and analyze the current medical practices employed and the attitudes regarding transition by Canadian pediatric urologists caring for the SB population. Methods: A survey consisting of 14 questions pertaining to physician demographics, current practice, and attitudes towards the transition process of SB patients was distributed at the 2015 annual Pediatric Urologists of Canada (PUC) conference. The survey respondents remained anonymous, and the data were collected and analyzed. Results: A total of 28 surveys were collected from urologists across Canada (25 full-time pediatric, three also providing adult care), representing a >75% response rate. The transition process was suggested to begin at the age of 18 or older by 43% (12/28) of pediatric urologists. The majority, 86% (24/28), do not currently use a questionnaire or a checklist to determine transition readiness of patients. Forty-six percent (13/28) of pediatric urologists do not provide ongoing urological care to their patients after referral has been made to adult-centred care. In the province of Ontario, in which 39% (11/28) of the pediatric urologists practice, 82% (9/11) are full-time pediatric urologists and 78% (7/9) do not provide ongoing care to SB patients after the age of 18. Conclusions: A significant minority of Canadian pediatric urologists perceive that the transition process should begin at the age of 18 or older. As such, it can be inferred that transfer of care and transition are synonymous, not independent. Simplistically, this suggests that transition represents an event rather than a longitudinal process. The fact there is no defined ongoing urological care as a component of this process, suggests the potential for substandard quality of care after these patients graduate to the adult sector. Different provincial healthcare systems and funding plans may further hinder this transition of care by denying provider continuity based on reimbursement plans.

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Section: Discussionmentioning

confidence: 99%

The transition process of spina bifida patients to adult-centred care: An assessment of the Canadian urology landscape

Wajchendler¹,

Anderson²,

Koyle³

2017

CUAJ

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“…2 It has been established that individuals with SB use health care services to a greater extent than the normal population. 4,16 After examining the utilization of acute medical and inpatient services over a 12-month period in our group of 10 respondents, we found that twice as many of them used emergency care services for non-SB-related conditions than for SB-related conditions.…”

Section: J Neurosurg Pediatr Volume 17 • February 2016 206mentioning

confidence: 99%

“…9,12 Moreover, few studies have assessed, empirically, the impact of this transition to adult-centered health care in terms of health care outcomes. 2 The purpose of this pilot study is to evaluate the health care access and utilization in the Jacksonville, Florida, area of young adults with spina bifida (YASBs) after transfer to adult care, as well as their quality of life (QOL) after transfer to adult care.…”

mentioning

confidence: 99%

Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida

Aguilera

Wood

Keeley³

et al. 2016

PED

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OBJECT The transition of the young adult with spina bifida (YASB) from pediatric to adult health care is considered a priority by organized pediatrics. There is a paucity of transition programs and related studies. Jacksonville Health and Transition Services (JaxHATS) is one such transition program in Jacksonville, Florida. This study’s purpose was to evaluate the health care access, utilization, and quality of life (QOL) of a group of YASBs who have transitioned from pediatric care. METHODS A survey tool addressing access to health care and quality of health and life was developed based on an established survey. Records of the Spinal Defects Clinic held at Wolfson Children’s Hospital and JaxHATS Clinic were reviewed and YASBs (> 18 and < 30 years old) were identified. RESULTS Ten of the 12 invited YASBs in the Jacksonville area completed the surveys. The mean age of respondents was 25.1 years. All reported regular medical home visits, 8 with JaxHATS and 2 with other family care groups. All reported easy access to medical care and routine visits to spina bifida (SB) specialists; none reported difficulty or delays in obtaining health care. Only 2 patients required emergent care in the last year for an SB-related medical problem. Seven respondents reported very good to excellent QOL. Family, lifestyle, and environmental factors were also examined. CONCLUSIONS In this small group of YASBs with a medical home, easy access to care for medical conditions was the norm, with few individuals having recent emergency visits and almost all reporting at least a good overall QOL. Larger studies of YASBs are needed to evaluate the positive effects of medical homes on health and QOL in this population.

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“…Loss of ambulation in late childhood is a well-recognised problem [11,12] that may be due to accepting the improved energy efficiency of a wheelchair, psychological factors or weight gain, but subtle neurological deterioration due to shunt dysfunction or a tethered spinal cord must be excluded. [13] Consideration must also be given to sexuality and planning for pregnancy and delivery.…”

Section: Specific Issues In Spina Bifidamentioning

confidence: 99%

Transition from child- to adult-orientated care for children with long-term health conditions: A process, not an event

2014

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What Do We Really Know About the Transition to Adult-Centered Health Care? A Focus on Cerebral Palsy and Spina Bifida

Cited by 227 publications

References 135 publications

The transition process of spina bifida patients to adult-centred care: An assessment of the Canadian urology landscape

The transition process of spina bifida patients to adult-centred care: An assessment of the Canadian urology landscape

Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida

Transition from child- to adult-orientated care for children with long-term health conditions: A process, not an event

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