Multi-Site Comparison of Patient, Parent, and Pediatric Provider Perspectives on Transition to Adult Care in IBD

Gray, Wayne D.; Reed-Knight, Bonney; Morgan, Pamela J.; Holbrook, Erin; Kugathasan, Subra; Saeed, Shehzad Ahmed; Denson, Lee A.; Hommel, Kevin A.

doi:10.1016/j.pedn.2018.01.008

Cited by 21 publications

(12 citation statements)

References 40 publications

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“…Gray et all [55] recently analysed, through a standardized quantifiable approach, what patients, parents and paediatric providers considered important to reach a successful transition. All participants selected the top five skills from the TRAQ, which were then compared to assess the rate of agreement.…”

Section: Perspectives and Barriers To Transition Carementioning

confidence: 99%

Can a transition clinic bridge the gap between paediatric and adult inflammatory bowel disease care models?

Nardone

Iacucci

Ghosh

et al. 2020

Digestive and Liver Disease

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Section: Perspectives and Barriers To Transition Carementioning

confidence: 99%

Can a transition clinic bridge the gap between paediatric and adult inflammatory bowel disease care models?

Nardone

Iacucci

Ghosh

et al. 2020

Digestive and Liver Disease

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“…Certain barriers were universal, including difficulties with changing relationships, difficulties accessing or funding adult services, negative beliefs about adult care, lack of knowledge about the transition process and lack of self-management skills. 44 Several studies [45][46][47] on transition for both physical and mental health conditions have found that young people, families and clinicians experience transition and the provision of support by health services differently. This underlines the importance of consulting with patients, their families and providers, to better understand key aspects of transition.…”

Section: Transition In Health-care Servicesmentioning

confidence: 99%

The transition from children’s services to adult services for young people with attention deficit hyperactivity disorder: the CATCh-uS mixed-methods study

Janssens

Eke

Price

et al. 2020

Health Serv Deliv Res

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Background Attention deficit hyperactivity disorder was previously seen as a childhood developmental disorder, so adult mental health services were not set up to support attention deficit hyperactivity disorder patients who became too old for child services. To our knowledge, this is the first in-depth study of the transition of attention deficit hyperactivity disorder patients from child to adult health services in the UK. Objectives Our objectives were to explore how many young people with attention deficit hyperactivity disorder are in need of services as an adult, what adult attention deficit hyperactivity disorder services are available and how attention deficit hyperactivity disorder stakeholders experience transition from child to adult services. Design An interactive mixed-method design was adopted with three study streams: (1) a 12-month surveillance study with 9-month follow-up to find out how many young people required ongoing medication when they were too old for child services (929 surveys completed by children’s clinicians); (2) a mapping study to identify and describe services for young adults with attention deficit hyperactivity disorder (2686 respondents to online surveys for patients and health workers and freedom of information requests to service providers and commissioners); and (3) a qualitative study to explore key stakeholders’ experiences of transition from child to adult services (144 interviews with 64 attention deficit hyperactivity disorder patients, 28 parents and 52 health clinicians; 38 working in child or adult secondary health services and 14 general practitioners). Members of the public advised at each stage of the study. Results When corrected for non-response and case ascertainment, the annual number of young people with an ongoing need for medication for attention deficit hyperactivity disorder lies between 270 and 599 per 100,000 people aged 17–19 years. Among 315 individuals eligible for transition, 64% were accepted, but only 22% attended their first adult services appointment. Our interactive map describes 294 unique services for adults with attention deficit hyperactivity disorder across the UK, of which 44 are ‘dedicated’ attention deficit hyperactivity disorder services. Few services provide the full range of recommended provision; most focus on diagnosis and medication. Services are unevenly distributed across the UK, with nearly all ‘dedicated’ services being in England. Exploring stakeholders’ experiences revealed how invested the stakeholders are in continuing attention deficit hyperactivity disorder treatment and how the architecture of services affects transition. An association between attention deficit hyperactivity disorder, education and continuance of medication into young adulthood, plus parent involvement and feeling prepared for transition and adult life with attention deficit hyperactivity disorder, influenced investment. However, even with investment, how accessible adult services are, how patient needs fit with the remit of the adult service and the level of patient information available affect transition outcomes. The results also highlight how general practitioners can end up as care co-ordinators during transition by default. Limitations Transition estimates were based on those who want medication, so these indicate a minimum level of need. Conclusions Few of those who need ongoing support for attention deficit hyperactivity disorder successfully transfer to adult services, and a small proportion of those who transfer experience optimal transitional care. Adult attention deficit hyperactivity disorder service provision is patchy. Even among ‘dedicated’ services, few provide the whole range of National Institute for Health and Care Excellence-recommended treatments. Future work We need to evaluate various models of transitional care and adult attention deficit hyperactivity disorder provision, as well as develop and evaluate psychosocial interventions for young people and adults with attention deficit hyperactivity disorder. Trial registration Current Controlled Trials ISRCTN12492022. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 42. See the NIHR Journals Library website for further project information.

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“…Unlike chronic diseases and/or disabilities diagnosed in early childhood, IBDs can be diagnosed on average around 15 years of age, subjecting adolescents to an accelerated transition path, and facilitating the experience of negative feelings such as, for example, embarrassment or vulnerability, and negative emotional experiences such as lack of control or social isolation (42,43). In particular, they are more prone to have low self-esteem, behavioral problems, alterations in the perception of body image and di culties in social skills.…”

Section: Need Of Protection Safenessmentioning

confidence: 99%

The Evolution of IBD Perceived Engagement and Care Needs Across the Life-Cycle: A Scoping Review

Volpato

Bosio

Previtali³

et al. 2020

Preprint

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Background: The chronic and progressive evolution of Inflammatory Bowel Diseases (IBD), with its prototypical fluctuating trend, creates a condition of psycho-social discomfort, impacting the quality of life in terms of personal, working and interpersonal.Aims: In this article, we want to identify the nature and extent of the research evidence on the life experiences, the perceived engagement and the psychosocial and medical needs of people affected by IBD across the lifecycle. Methods: Following the approach set out by Arksey and O’Malley and the PRISMA extension for scoping reviews, we conducted a scoping review in March 2019 and closed the review with an update in October 2019. It was performed using electronic databases covering Health and Life Sciences, Social Sciences and Medical Sciences, such as PubMed, Medline, Embase, Scopus, Cochrane, Web of Science, PsycInfo.Results: We identified 95 peer-reviewed articles published from 2009 to 2019, that allowed to detect the main needs in children (psychological, need to be accepted, physical activity, feeding, parent style and support, social needs), adolescents (to understand, physical and psychological needs, protection, relational, gratitude, respect and engagement) and adults (information, medical, psychological, social, work-related, practical, future-related, engagement). Although the literature confirms that the majority of the IBD units have planned provision for the different types of transitions, the quality and appropriateness of these services have not been assessed or audited for all the kind of challenges across the life cycle. Conclusions: The literature shows the relevance of organising a flexible, personalised health care process across all the critical phases of the life cycle, providing adequate benchmarks for comparison in a multidisciplinary perspective and ensuring continuity between hospital and territory.

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Multi-Site Comparison of Patient, Parent, and Pediatric Provider Perspectives on Transition to Adult Care in IBD

Cited by 21 publications

References 40 publications

Can a transition clinic bridge the gap between paediatric and adult inflammatory bowel disease care models?

Can a transition clinic bridge the gap between paediatric and adult inflammatory bowel disease care models?

The transition from children’s services to adult services for young people with attention deficit hyperactivity disorder: the CATCh-uS mixed-methods study

The Evolution of IBD Perceived Engagement and Care Needs Across the Life-Cycle: A Scoping Review

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