Lost in transition: Exploring how young people with cancer are transitioned from child to adult services acrossdifferent healthcare systems.

McInally, Wendy (2011). Lost in transition: Exploring how young people with cancer are transitioned from child to adult services acrossdifferent healthcare systems. Florence Nightingale Foundation/ Edinburgh Napier University.

URL: https://www.napier.ac.uk/research-and-innovation/r...


Cancer nursing care across the United Kingdom over the past 20 years has dramatically improved for children and young people with cancer (Department of Health 2007). Today around 70% of young people diagnosed with cancer survive into adulthood, albeit with long term health complications. This raises the contemporary concern of how best to transition these patients to an adult focused care regime (National Cancer Institute 2012).

In the United Kingdom alone there are approximately 1,400 new cases of cancer in children under the age 15 years of age each year. In the 15-to-24 year olds, there are approximately 1,900 new cases per year (National Cancer Intelligence Network 2008). The types of cancer that affect young people are different to the cancers that strike children and adults (Children Cancer Leukaemia Group 2012) and these individual patients and their families require specific expert care.

It is therefore crucial that care is provided in an age appropriate setting. It is estimated that many of these young people with cancer are not treated within a setting appropriate for their age (National Institute of Clinical Excellence 2005). The majority of these patients are not currently considered for entry into clinical trials (Hollis and Hooker 2009) which ultimately impacts on the overall cancer survival and recovery from the disease.

The experience of young people living with or beyond a cancer diagnosis is vital to the overall understanding of the cancer journey. Once a child or young person reaches a certain age, transition of care from a child to adult service should begin in an age appropriate, planned and seamless way (Royal College Nursing 2004). McCann (2012) found in a recent study that all health professionals, young people and their families need to be too ready for transition. In order to achieve this appropriate planning and preparation for the transition needs to be put in place.

This report and associated review of the literature reveals the wide discrepancy in the transition models currently being implemented for young people and their families with cancer. Some are transitioned to adult services at a well-defined and clearly communicated juncture, such as age or on completion of their treatment regime. Many others remain within the children’s oncology/haematology specialist service late into adulthood with no clear model of transition (Department of Health 2007). In addition it is recommended that all young people are given the opportunity to decide when and where they would prefer to be treated (Royal College of Physicians of Edinburgh 2008, National Cancer Action Team 2012). For example the National Institute of Clinical Excellence (2005) suggests that young adults aged 19 years and above may make an informed choice on their place of care.

The development and introduction of appropriate and effective transition models is now emerging as one of the most important factors within the individual patients overall cancer journey experience.

This report compares the various transition models currently being utilised across the United Kingdom (Scotland, Northern Ireland, England and Wales), Finland (Lahti) and the United States America (North Carolina).The specific objectives of this report are to:

Develop an understanding of national and international transitional practices.

Establish if patients are given a genuine choice regarding their place of care.

Identify how nurses (undergraduate and postgraduate) are prepared to care for young people with cancer as they transition from child to adult services.

Strengthen links between the Children and Young People’s Cancer Community Nursing education group and international partners.

Create a clinical / academic writing team to further explore this important area.

This report presents a series of recommendations to further improve nursing practice and advance the care delivery for this patient group and their families. These recommendations will be presented at a European or International conference, and published through a high impact academic journal and a peer review journal during 2013. It is also the author’s intention to take forward a number of the recommendations made in this report through applying for further research grants early in 2013.

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