Transition From Child to Adult Care – ‘It's Not a One-Off Event’: Development of Benchmarks to Improve the Experience

Aldiss, Susie; Ellis, Judith; Cass, Hilary; Pettigrew, Tanya; Rose, Laura L.; Gibson, Faith

doi:10.1016/j.pedn.2015.05.020

Cited by 52 publications

(50 citation statements)

References 21 publications

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“…Addressing the challenges of ‘joined up’ working across paediatric and adult rheumatology and within clinical networks has also been highlighted by others 85. Our recommendations, in agreement with other recent taskforces,80 84 emphasise the importance of identifying key individuals, the integral role of YP and families, written communication, agreed policy, training and clarity of roles within teams. Therewith, they focus on process areas that are most in need of improvement according to care providers and consumers, such as co-ordination, guidelines, protocols and communication 66.…”

Section: Discussionsupporting

confidence: 70%

“…In most instances, such consensus underscored items related to co-ordination and communication as basis for good partnership between paediatric and adult providers. Another initiative, developed during our project, obtained a clinical practice-benchmark tool for transition to adult care in the UK through a process of mapping 84. There is no single outcome of ‘successful’ transition and potential indicators need to include clinical parameters (disease activity and status), patient (and family) experience (of care), psychosocial, educational and vocational status, quality of life measures, participation in adult life, engagement and attendance in adult healthcare, adherence to treatment and achievement of young adult developmental tasks.…”

Section: Resultsmentioning

confidence: 99%

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EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

et al. 2016

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To develop standards and recommendations for transitional care for young people (YP) with juvenileonset rheumatic and musculoskeletal diseases ( jRMD). The consensus process involved the following: (1) establishing an international expert panel to include patients and representatives from multidisciplinary teams in adult and paediatric rheumatology; (2) a systematic review of published models of transitional care in jRMDs, potential standards and recommendations, strategies for implementation and tools to evaluate services and outcomes; (3) setting the framework, developing the process map and generating a first draft of standards and recommendations; (4) further iteration of recommendations; (5) establishing consensus recommendations with Delphi methodology and (6) establishing standards and quality indicators. The final consensus derived 12 specific recommendations for YP with jRMD focused on transitional care. These included: high-quality, multidisciplinary care starting in early adolescence; the integral role of a transition coordinator; transition policies and protocols; efficient communications; transfer documentation; an open electronic-based platform to access resources; appropriate training for paediatric and adult healthcare teams; secure funding to continue treatments and services into adult rheumatology and the need for increased evidence to inform best practice. These consensus-based recommendations inform strategies to reach optimal outcomes in transitional care for YP with jRMD based on available evidence and expert opinion. They need to be implemented in the context of individual countries, healthcare systems and regulatory frameworks.

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Section: Discussionsupporting

confidence: 70%

Section: Resultsmentioning

confidence: 99%

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

et al. 2016

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“…Being gradually prepared (Factor 2) to move into adult roles with a developmentally appropriate approach, through collaboration between pediatric and adult teams (Factor 3), will require some approach to “overlap” to help connect the two systems and bridge the perceived “care gap” (39). Primary care involvement was mentioned by our participants: in the UK this would be the role of the general practitioner (GP), and although an initial contentious inclusion in our benchmarks (15), there was a final recognition of the importance of this role (Factor 8). Certainly, NICE Guidance (23) confirms the importance of primary care, and although there is limited empirical evidence to guide primary care interventions (40), we know that system level changes are needed to improve transitional care: hopefully, the benchmarks will go some way to support this.…”

Section: Discussionmentioning

confidence: 99%

“…It is of course important to not only seek the views of professionals around transition but also include users – young people and parents. This work did include user perspectives, which are reported elsewhere [(15), ].…”

Section: Discussionmentioning

confidence: 99%

“…Our study was concerned with the development of a clinical practice-benchmark “tool”; a “tool” that would combine evidence from research and policy, informing the points of comparison that would be used as the benchmark to facilitate transitional care (15). We sought the opinion of three discrete groups of experts in the development of the benchmarks: (a) group of health professionals involved in either researching transitional care or influencing policy and practice; (b) health-care professionals involved in the delivery of transition programs; and (c) young people aged 13–21 years with a long-term health condition and their parents.…”

Section: Introductionmentioning

confidence: 99%

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“We Sometimes Hold on to Ours” – Professionals’ Views on Factors that both Delay and Facilitate Transition to Adult Care

et al. 2016

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BackgroundThe transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed “care gap.” Health service provision, which fails to meet the needs of young people and families at this time of significant change, may result in deterioration in health or disengagement with services, which can have negative long-term consequences. Developing transitional care packages has become a focus of activity in the United Kingdom and elsewhere. Indeed, policy documents have been trying to guide practice for many years, with some variable success. There is much work still to be done, particularly around how guidance and the sharing of best practice, when combined can result in a change in practice.ObjectiveThis study aimed to explore the views of professionals involved in transitional care, the process of transition in their services, and the barriers and facilitators to transition.MethodsThis was a qualitative study using focus group methodology. Four focus groups were carried out, attended by 36 health professionals across child and adult services. They had expertise in working with young people with various health conditions and disabilities. Transcripts were analyzed using qualitative content analysis.ResultsEight key factors that impact on transition emerged from the data. These included factors associated with the patient group (such as age, health condition, having complex needs) as well as factors associated with services (such as the availability of equivalent services within adult care and the links between child and adult team).ConclusionIt is imperative that health professionals consider the population they are working with when planning transitional care and take into account the factors which can lead to delayed transition, so that this can be avoided if possible. Numerous examples of initiatives to facilitate more timely transition were shared: these have been reflected in our “Benchmarks for Transition from Child to Adult Health Services.” We offer these benchmarks to inform and guide the practice of others and illustrate their potential for use in the context of the findings shared here.

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Changing HPV vaccination rates in bisexual and lesbian women

Polek

Hardie

2017

Journal of the American Association of Nurse Practitioners

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Background Human papillomavirus (HPV) vaccination rates continue to be below national targets for women and lower in some sexual minorities. HPV is a primary causal agent in cervical cancer, from which members of the lesbian and bisexual community mistakenly believe they are at low risk. This study characterized rates of HPV vaccination in women based on their sexual orientation. Methods Data were obtained from the Centers for Disease Control and Prevention's National Health Interview Survey 2013–2014. This survey evaluated 5695 women—113 (2%) lesbian, 135 (2.4%) bisexual, and 5446 (95.6%) heterosexual women ages 18–26 in 2006—using logistic regression. A dependent variable of having had HPV vaccination and independent variable of sexual orientation was used. Results Significant differences were found in vaccine uptake based on sexual orientation. Bisexual women were most likely to be vaccinated, and differed significantly from heterosexual and lesbians which did not differ significantly from each other. The results suggest improvement in sexual minority rates but this finding is tempered by the low rates of vaccination in adult women. Implications The low vaccination rates in adult women and sexual minorities merit further study. The low rates may be a function of the transition from pediatric to adult care and/or practice barriers perceived by sexual minorities.

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Transition From Child to Adult Care – ‘It's Not a One-Off Event’: Development of Benchmarks to Improve the Experience

Cited by 52 publications

References 21 publications

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

“We Sometimes Hold on to Ours” – Professionals’ Views on Factors that both Delay and Facilitate Transition to Adult Care

Changing HPV vaccination rates in bisexual and lesbian women

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