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      Value of an outpatient transition clinic for young people with inflammatory bowel disease: a mixed-methods evaluation

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          Abstract

          Objective

          Developing and evaluating effective transition interventions for young people (16–25 years) with inflammatory bowel disease (IBD) is a high priority. While transition clinics (TCs) have been recommended, little is known about their operating structures and outcomes. This study aimed to gain insight into the value of a TC compared with direct handover care.

          Design

          Controlled mixed-methods evaluation of process outcomes, clinical outcomes and patient-reported outcomes.

          Setting

          Two outpatient IBD clinics in the Netherlands.

          Participants

          Data collection included: semistructured interviews with professionals (n=8), observations during consultations with young people (5×4 hours), medical chart reviews of patients transferred 2 to 4 years prior to data collection (n=56 in TC group; n=54 in control group) and patient questionnaires (n=14 in TC group; n=19 in control group).

          Outcomes

          Data were collected on service structures and daily routines of the TC, experienced barriers, facilitators and benefits, healthcare use, clinical outcomes, self-management outcomes and experiences and satisfaction of young people with IBD.

          Results

          At the TC, multidisciplinary team meetings and alignment of care between paediatric and adult care providers were standard practice. Non-medical topics received more attention during consultations with young people at the TC. Barriers experienced by professionals were time restrictions, planning difficulties, limited involvement of adult care providers and insufficient financial coverage. Facilitators experienced were high professional motivation and a high case load. Over the year before transfer, young people at the TC had more planned consultations (p=0.015, Cohen’s d=0.47). They showed a positive trend in better transfer experiences and more satisfaction. Those in direct handover care more often experienced a relapse before transfer (p=0.003) and had more missed consultations (p=0.034, Cohen’s d=−0.43) after transfer.

          Conclusion

          A TC offer opportunities to improve transitional care, but organisational and financial barriers need to be addressed before guidelines and consensus statements in healthcare policy and daily practice can be effectively implemented.

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          Most cited references26

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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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            Implementing transition: Ready Steady Go

            There is good evidence that morbidity and mortality increase for young persons (YP) following the move from paediatric to adult services. Studies show that effective transition between paediatric and adult care improves long-term outcomes. Many of the issues faced by young people across subspecialties with a long-term condition are generic. This article sets out some of the obstacles that have delayed the implementation of effective transition. It reports on a successful generic transition programme ‘Ready Steady Go’ that has been implemented within a large National Health Service teaching hospital in the UK, with secondary and tertiary paediatric services, where it is now established as part of routine care.
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              The internal consistency and construct validity of the partners in health scale: validation of a patient rated chronic condition self-management measure.

              The purpose of this study was to test the internal consistency and construct validity of the revised 12-item self-rated Partners in Health (PIH) scale used to assess patients' chronic condition self-management knowledge and behaviours. Baseline PIH data were collected for a total of 294 patients with a range of co-morbid chronic conditions including diabetes, cardiovascular disease and arthritis. Scale data for the initial sample of 176 patients were analysed for internal consistency and construct validity using Reliability Analysis and Factor Analysis. Construct validity was tested in a separate sample of 118 patients using confirmatory factor analysis and a structural equation model. Good internal consistency was indicated with a Cronbach's alpha coefficient of 0.82 in the initial sample. Factor analysis for this sample revealed four key factors (knowledge, coping, management of condition and adherence to treatment) across the twelve items of the scale. These four key factors were then confirmed by applying the exploratory structural equation model to the separate sample. The PIH scale exhibits construct validity and internal consistency. It therefore is both a generic self-rated clinical tool for assessing self-management in a range of chronic conditions as well as an outcome measure to compare populations and change in patient self-management knowledge and behaviour over time. The four domains of self-management provide a valid measure of patient competency in relation to the self-management of their chronic condition(s).
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2020
                6 January 2020
                : 10
                : 1
                : e033535
                Affiliations
                [1 ] departmentResearch Centre Innovations in Care , Rotterdam University of Applied Sciences , Rotterdam, The Netherlands
                [2 ] departmentErasmus School of Health Policy & Management , Erasmus University Rotterdam , Rotterdam, The Netherlands
                [3 ] departmentDepartment of Pediatric Gastroenterology , University Medical Center Utrecht , Utrecht, The Netherlands
                [4 ] departmentDepartment of Pediatric Gastroenterology , Erasmus Medical Centre - Sophia Children's Hospital , Rotterdam, The Netherlands
                Author notes
                [Correspondence to ] Dr AnneLoes van Staa; vanstaa@ 123456eshpm.eur.nl
                Author information
                http://orcid.org/0000-0002-0433-5022
                Article
                bmjopen-2019-033535
                10.1136/bmjopen-2019-033535
                6955474
                31911522
                b249228f-28a1-434b-b52c-0b20b05a45ed
                © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

                History
                : 12 August 2019
                : 06 November 2019
                : 10 December 2019
                Categories
                Gastroenterology and Hepatology
                1506
                1695
                Original research
                Custom metadata
                unlocked

                Medicine
                inflammatory bowel disease,transitional care,self-management,young adults,adolescents
                Medicine
                inflammatory bowel disease, transitional care, self-management, young adults, adolescents

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