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

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          Abstract

          <div class="section"> <a class="named-anchor" id="S1"> <!-- named anchor --> </a> <h5 class="section-title" id="d1206407e203">Purpose:</h5> <p id="P1">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. </p> </div><div class="section"> <a class="named-anchor" id="S2"> <!-- named anchor --> </a> <h5 class="section-title" id="d1206407e208">Methods:</h5> <p id="P2">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. </p> </div><div class="section"> <a class="named-anchor" id="S3"> <!-- named anchor --> </a> <h5 class="section-title" id="d1206407e213">Results:</h5> <p id="P3">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. </p> </div><div class="section"> <a class="named-anchor" id="S4"> <!-- named anchor --> </a> <h5 class="section-title" id="d1206407e218">Conclusions:</h5> <p id="P4">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. </p> </div>

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          Most cited references31

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          Improving the transition between paediatric and adult healthcare: a systematic review.

          The transition between paediatric and adult care for young people with chronic illness or disability is often poorly managed, with adverse consequences for health. Although many agree that adolescent services need to be improved, there is little empirical data on which policies can be based. To systematically review the evidence of effectiveness of transitional care programmes in young people aged 11-25 with chronic illness (physical or mental) or disability, and identify their successful components. A systematic literature review in July 2010 of studies which consistently evaluated health outcomes following transition programmes, either by comparison with a control group or by measurement pre-intervention and post-intervention. 10 studies met the inclusion criteria, six of which showed statistically significant improvements in outcomes. Descriptive analysis identified three broad categories of intervention, directed at: the patient (educational programmes, skills training); staffing (named transition co-ordinators, joint clinics run by paediatric and adult physicians); and service delivery (separate young adult clinics, out of hours phone support, enhanced follow-up). The conditions involved varied (eg, cystic fibrosis, diabetes mellitus), and outcome measures varied accordingly. All six interventions that resulted in significant improvements were in studies of patients with diabetes mellitus, with glycosylated haemoglobin level, acute and chronic complications, and rates of follow-up and screening used as outcome measures. The most commonly used strategies in successful programmes were patient education and specific transition clinics (either jointly staffed by paediatric and adult physicians or dedicated young adult clinics within adult services). It is not clear how generalisable these successful studies in diabetes mellitus will be to other conditions.
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            Spina Bifida Outcome: A 25-Year Prospective

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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.

              To address the lack of synthesis regarding the factors, processes, and outcomes specific to the transition from child-centered to adult-centered health care for people with cerebral palsy (CP) and spina bifida (SB); more specifically, to identify barriers, to outline key elements, to review empirical studies, and to make clinical and research recommendations. We searched Medline and CINAHL databases from 1990 to 2006 using the key words: transition, health care transition, pediatric health care, adult health care, health care access, health care use, chronic illness, special health care needs, and physical disability. The resulting studies were reviewed with a specific focus on clinical transition for persons with CP and SB, and were supplemented with key information from other diagnostic groups. All studies meeting the inclusion criteria were included. Each article classified according to 5 criteria: methodology, diagnostic group, country of study, age group, and sample size. We identified 149 articles: 54 discussion, 21 case series, 28 database or register, 25 qualitative, and 34 survey articles (some included multiple methods). We identified 5 key elements that support a positive transition to adult-centered health care: preparation, flexible timing, care coordination, transition clinic visits, and interested adult-centered health care providers. There was, however, limited empirical evidence to support the impact of these elements. This review summarizes key factors that must be considered to support this critical clinical transition and sets the foundation for future research. It is time to apply prospective study designs to evaluate transition interventions and determine long-term health outcomes.
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                Author and article information

                Journal
                Journal of Pediatric Rehabilitation Medicine
                PRM
                IOS Press
                18758894
                18745393
                December 13 2018
                December 13 2018
                : 11
                : 4
                : 323-334
                Affiliations
                [1 ]Spina Bifida Program, Children’s of Alabama, University of Alabama at Birmingham, Birmingham, AL, USA
                [2 ]Department of Neurosurgery, University of Alabama at Birmingham, Birmingham, AL, USA
                [3 ]Department of Urology, University of Alabama at Birmingham, Birmingham, AL, USA
                [4 ]Department of Physical Medicine and Rehabilitation, University of Alabama at Birmingham, Birmingham, AL, USA
                [5 ]Department of Orthopedics, University of Alabama at Birmingham, Birmingham, AL, USA
                Article
                10.3233/PRM-180548
                6924509
                30507593
                bc8543d2-d153-486d-b28b-e5ebeba70708
                © 2018
                History

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