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      Quantitative evaluation of a pediatric rheumatology transition program

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          Abstract

          Background

          Transition from pediatric to adult care can be a challenging process which leaves young people vulnerable to interruptions of care and worsening disease status. Efforts to improve transition processes and outcomes have included development of individualized transition plans, creation of transition clinics, and utilization of transition coordinators. Few interventions have assessed transition outcomes quantitatively.

          Methods

          We assessed transition outcome and satisfaction of a social worker-centered transition program in a pediatric rheumatology clinic. The social worker met with patients who were 16 years or older and their families, provided transition education materials, assisted patients in developing an individualized transition plan, assisted in making appointments with an adult rheumatologist at time of transfer of care, and followed up with patients to assess transition outcomes. Patients were contacted 6–8 months after initial appointment with the adult rheumatologist to assess whether they remained in the care of the adult provider. Participants then completed a questionnaire to rate their satisfaction with the transition program.

          Results

          210 adolescents and young adults participated in the transition program. Twenty-six similarly aged patients were eligible for transition services but did not participate in the program and were used as controls. Of the patients who participated in the program, 42 % were considered to have transitioned successfully to adult care compared to 23 % of controls ( p-value = 0.002) of all patients. In the survey of satisfaction, 81 % of participants said that they were satisfied with the transition process.

          Conclusions

          This study shows that a social worker transition coordinator can significantly improve the rate of pediatric rheumatology patients who successfully transition to adult care. Furthermore, patients are largely satisfied with this process.

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          Most cited references28

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          A consensus statement on health care transitions for young adults with special health care needs.

          , , (2002)
          This policy statement represents a consensus on the critical first steps that the medical profession needs to take to realize the vision of a family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent health care system that is as developmentally appropriate as it is technically sophisticated. The goal of transition in health care for young adults with special health care needs is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. This consensus document has now been approved as policy by the boards of the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine.
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            Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers.

            Transition from paediatric to adult healthcare has received little attention in the Netherlands. This study aimed to: (i) map experiences with the transfer to adult care of young adults with chronic conditions; and (ii) identify recommendations for transitional care of young adults, their parents and healthcare providers. Semi-structured interviews with 24 young adults after transfer (aged 15-22 years; diagnosed with haemophilia, diabetes mellitus, spina bifida, congenital heart disorders, cystic fibrosis, juvenile rheumatoid arthritis or sickle cell disease), 24 parents and 17 healthcare providers. Thematic analysis was performed. Only the haemophilia department offered a structured transition programme, most patients had not been prepared for transition. Experiences and views of patients, parents and professionals mainly overlapped and were condensed into four core themes. Two are related to moving to adult care: (1) 'leaving paediatric care is a logical step'. Leaving familiar surroundings was harder for parents than for young adults who displayed a positive 'wait-and-see' attitude; and (2) 'transition is complicated by cultural gaps between paediatric and adult services'. Young adults and parents felt lost after transfer and recommended their peers 'to be alert and involved'. Providers also recognized the cultural chasm between both services and worried about non-compliance, lost to follow-up and lack of independence. Two other themes indicated priorities for improvement: (3) 'better patient and parent preparation' for differences between healthcare settings and for new roles and responsibilities with respect to self-management; and (4) 'more collaboration and personal links' between paediatric and adult care providers. Action is required to cross the chasm between paediatric and adult-oriented care. Preparation for transition should start early and focus on strengthening adolescents' independency without undermining parental involvement. Building bridges between services, gaining trust and investing in new personal relations is a challenge for all parties involved: transition is about responding and bonding. © 2011 Blackwell Publishing Ltd.
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              The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis.

              There is an extensive evidence base for the need of transitional care, but a paucity of robust outcome data. The aim of the study was to determine whether the quality of life of adolescents with juvenile idiopathic arthritis (JIA) could be improved by a co-ordinated, evidence-based programme of transitional care. Adolescents with JIA aged 11, 14 and 17 yrs and their parents were recruited from 10 rheumatology centres in the UK. Data were collected at baseline, 6 and 12 months including core outcome variables. The primary outcome measure was health-related quality of life (HRQL): Juvenile Arthritis Quality of Life Questionnaire (JAQQ). Secondary outcome measures included: knowledge, satisfaction, independent health behaviours and pre-vocational experience. Of the 359 families invited to participate, 308 (86%) adolescents and 303 (84%) parents accepted. A fifth of them had persistent oligoarthritis. Median disease duration was 5.7 (0-16) yrs. Compared with baseline values, significant improvements in JAQQ scores were reported for adolescent and parent ratings at 6 and 12 months and for most secondary outcome measures with no significant deteriorations between 6 and 12 months. Continuous improvement was observed for both adolescent and parent knowledge with significantly greater improvement in the younger age groups at 12 months (P = 0.002). This study represents the first objective evaluation of an evidence-based transitional care programme and demonstrates that such care can potentially improve adolescents' HRQL.
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                Author and article information

                Contributors
                Paul.Jensen@osumc.edu
                Jill.Karnes@nationwidechildrens.org
                Karla.Jones@nationwidechildrens.org
                Amy.Lehman@osumc.edu
                Rennebr@ccf.org
                Gloria.Higgins@nationwidechildrens.org
                Charles.Spencer@nationwidechildrens.org
                Stacy.Ardoin@osumc.edu
                Journal
                Pediatr Rheumatol Online J
                Pediatr Rheumatol Online J
                Pediatric Rheumatology Online Journal
                BioMed Central (London )
                1546-0096
                24 May 2015
                24 May 2015
                2015
                : 13
                : 17
                Affiliations
                [ ]Department of Internal Medicine, The Ohio State University Wexner Medical Center, 395 W. 12th Avenue Third Floor, Columbus, OH 43210 USA
                [ ]Department of Pediatrics, Nationwide Children’s Hospital, 700 Children’s Drive, Columbus, OH 43205 USA
                [ ]Center for Biostatistics, The Ohio State University Wexner Medical Center, 2012 Kenny Road, Columbus, OH 43221 USA
                [ ]Department of Pediatrics, Cleveland Clinic Foundation, 9500 Euclid Avenue, Cleveland, OH 44195 USA
                Article
                13
                10.1186/s12969-015-0013-0
                4453213
                26003474
                70418588-fedc-4287-9310-3998788066ea
                © Jensen et al. 2015

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 16 December 2014
                : 1 May 2015
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2015

                Pediatrics
                (3–10) pediatric,rheumatology,adolescent,health care transition
                Pediatrics
                (3–10) pediatric, rheumatology, adolescent, health care transition

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