Literature Review: Transition From Paediatric to Adult Services in Haemophilia

Chaplin, Steve

doi:10.17225/jhp00059

Cited by 3 publications

(2 citation statements)

References 73 publications

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“…31 Transition is considered an individualized age-and development-appropriate process by means of which individual patients can be empowered to self-manage their disease with the assistance of their family and multidisciplinary teams. 32 Therefore, further research on nurse-led interventions are required to assist young people with hemophilia achieve a smooth transition to adult services for hemophilia. Therapeutic care programs for people with hemophilia should not be assessed only in terms of the monetary cost of achieving adequate musculoskeletal outcomes.…”

Section: Research and Policymentioning

confidence: 99%

Challenges facing community-dwelling adults with hemophilia: Implications for community-based adult education and nursing

et al. 2019

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Community-dwelling adults are members of society residing in community settings. Communitybased adult education is designed for local residents and groups, to enable them to improve their quality of life within their community. Hemophilia is a bleeding disorder that can be inherited or acquired. World Hemophilia Day 2018 helped to raise awareness about the importance of sharing knowledge and the experience of hemophilia, as well as to improve access to care and treatment among people with this bleeding disorder. We used the documentary method of research, which has been adopted in recent review articles, to collect and analyze the findings of published literature on hemophilia. Our results showed that community-dwelling adults with hemophilia have concerns that merit the attention of government and non-governmental agencies. Some challenges faced by many community-dwelling adults with hemophilia include the cost of treatment and employment challenges. Herein, we discuss the implications for community-based health education and nursing with respect to patient care, adult education, nursing education, management, research, and policy. Finally, the authors note that sustainable efforts are needed in the provision of local, national and international leadership and educational resources to improve and sustain health care for community-dwelling adults with hemophilia.

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Section: Research and Policymentioning

confidence: 99%

Challenges facing community-dwelling adults with hemophilia: Implications for community-based adult education and nursing

et al. 2019

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“…There has been a lot of research and debate about what constitutes an effective transition service [4][5][6] . In 2014, NICE developed an evidence-based guideline that could be applied in health and social care settings [2] .…”

Section: What Does the Nhs Mean By Transition?mentioning

confidence: 99%

Transforming Transition: enhancing practice in haemophilia

Dodgson¹,

Holland²,

Pembroke³

et al. 2018

The Journal of Haemophilia Practice

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Transition is the term used to describe the process of approaching and crossing the chronological boundary between paediatric and adult care services. Transfer of care describes the administrative arrangements associated with moving from a paediatric to an adult service across this boundary. Transforming Transition was a nurse-led initiative designed to facilitate the sharing of knowledge and experience to enhance transition practice in the UK. The aims of the programme were to secure changes in working practices that enabled nurses to drive improved transition outcomes, enhance self-management by people with haemophilia and develop clinical leadership. From the outset of the programme it was clear that there were differences in practice and that sharing practice would be one route to addressing some of these variations. As a result of the knowledge and experience shared through the programme, resources described in this paper are available to all haemophilia centres. Sharing between people with haemophilia, their families and carers, and the haemophilia clinical team have resulted in the development of practical resources that enhance practice within the haemophilia centre. Sharing of practice between nurses and young people with haemophilia at the programme workshops provided a focus for development of local and regional action plans, a framework for reviewing progress, the introduction of transition clinics and improved transition documentation.

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Young people’s experience of transition from paediatric to adult haemophilia care in the UK

Pembroke¹,

Dodgson²

2018

The Journal of Haemophilia Practice

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People with haemophilia and other bleeding disorders, such as von Willebrand’s Disease (vWD), are frequently diagnosed in childhood. There is, therefore, a recognised need to prepare children and young people with these conditions for transfer to long-term care in the adult sector. The Transforming Transition programme was designed to facilitate the sharing of knowledge and experience to enhance transition practice in the UK. The aim of the programme was to secure change in working practices to enable nurses to drive improved transition outcomes, enhance self-management by people with haemophilia and develop clinical leadership. As part of the programme, we captured young people’s views of their transition experiences by means of a series of structured interviews conducted with young people identified through the patient association. Interviews revealed that transition tended to take place around the age of 16 but could be delayed in response to individual circumstances. The transition process did not always appear to be planned, with many participants reporting an abrupt or sudden change between paediatric and adult teams and/or centres. Those with severe haemophilia tended to be well educated and prepared by their paediatric teams to be confident in managing their condition from an early age. They would learn to self-infuse between the ages of 5-11, and reported feeling confident in tailoring their treatment around their daily routine. Experience of transition to adult services varied, with about half describing it as fairly well planned. For those with bleeding disorders such as vWD, there was rarely a transition process. These individuals and people with mild haemophilia described having less exposure to opportunities to learn self-management and appeared to experience issues which coincided with significant lifestyle changes, such as leaving home and attending university. This highlights the importance of ensuring that patients across the spectrum of bleeding disorders are adequately supported in the lead-up to and transfer to adult services. The interviews also reinforce the need to continue to address the specific needs of women with bleeding disorders as they transfer to adult services. The learning from this phase of the Transforming Transition programme was submitted to NICE as part of the consultation on its guideline.

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Literature Review: Transition From Paediatric to Adult Services in Haemophilia

Cited by 3 publications

References 73 publications

Challenges facing community-dwelling adults with hemophilia: Implications for community-based adult education and nursing

Challenges facing community-dwelling adults with hemophilia: Implications for community-based adult education and nursing

Transforming Transition: enhancing practice in haemophilia

Young people’s experience of transition from paediatric to adult haemophilia care in the UK

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