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As we move through childhood into adolescence and adulthood we experience many transitions. People with haemophilia and other bleeding disorders are supported by their healthcare team as they learn to manage their treatment regime and their condition alongside these changes. At around the age of 16-18 years, most will transfer from children’s and adolescent services to adult services. For some this is a smooth process; for others it can be a challenging time that can have detrimental effects on their longer term health and lives.

Haemnet has been funded by the Burdett Trust for Nursing to undertake a nurse-led initiative to improve transition for young people with bleeding disorders by reviewing current practice, agreeing outcome measures, developing and delivering a patient-led development programme. The project aims to improve transition by securing changes in working practices that enable nurses to drive improved transition outcomes and support patients’ in self managing their treatment regime and their condition.

What’s happening?

A collaborative working group of young people with haemophilia, clinical and educational specialists has come together. They shared findings from an initial qualitative research – literature review; telephone survey of patients and parents, and a series of centre visits during which a transition self-assessment questionnaire was trialled. They used these to identify some areas for action, such as:

  • Exploring consensus around the developmentally appropriate ages at which boys with severe haemophilia could be expected to have acquired specific knowledge and skills (e.g. self-infusion)
  • Developing interactive patient tools for use in clinics and beyond
  • Commissioning animations that support development of the knowledge and skills needed for self-management, before, during and after transfer to adult services
  • Supporting development of clinicians committed to leading activities that improve transition practice

Literature review

The literature review looked at current approaches to transition and lessons learned from best practice in haemophilia and other long term conditions, in the UK and internationally. The literature review has now been published in The Journal of Haemophilia Practice, an open-access journal for sharing experience in the care of people with bleeding disorders (http://www.haemjournal.com/external/articles/doi/doi:10.17225/jhp00059).

Core themes

In reviewing the qualitative research some core themes were identified that support effective transfer from children’s to adults’ services. These are shown below and incorporate themes from the NICE guidance on ‘Transition from children’s to adults’ services for young people using health or social care services’ [NG43] published in February 2016.

Theme Highlights
Person-centred Active process with the young person; developmentally appropriate timing; readiness for self-management
Transition planning Named worker; across transition; strengths based; health plan

Education & training

Young person – build independence; Teams – adolescent health
Documentation Clear, concise, consistent; individual as young person; facilitated integrated working
Service planning/delivery Design around the individual; social media and technology; date from service users, education, health and social care
Leadership Collaborative leadership; co-ordinated teams
Consent/confidential Expressed consent; info sharing protocols; capacity issues 
Safety/safeguarding Ensure safety / minimise risk at all times

Findings - so far:

  • Transfer to adult services works best when paediatric and adult teams communicate well
  • When transition works well, patients barely notice it – it is just part of growing up
  • Transition and transfer is often not considered for girls and patients with non-severe bleeding disorders
  • Development of patient’s skills for self management of their treatment regime can also support them in the management of their condition
  • Development of an outcome framework would be of benefit to all – patients, families and practitioners. At the core of this will be addressing development of the knowledge and skills to manage one’s treatment regime and one’s condition.

  

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