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Lost in transition – why we need special palliative care for teenagers and young adults

June 27, 2014, 11:30 2310 Author: Dr Lorna K Fraser eapcnet.wordpress.com There is so much discussion and focus on transition from children’s to adult services at present, which is great, but in many areas of the UK there are not age-appropriate services available to care for these young adults

Dr Lorna K Fraser (Photo: Ian Martindale Photography)

Dr Lorna Fraser, Anniversary Research Lecturer, Department of Health Sciences York, UK, explains the background to a longer research article that has been selected as Editor’s Choice in the June edition of Palliative Medicine.

I have been working in the area of paediatric palliative care research for several years now and I have an interest in trying to ensure that high quality research is used to enable equitable access to services for children and young people with life-limiting or life-threatening conditions. After speaking to parents of young adults with life-limiting conditions at our local children’s hospice it became evident that as these young people started to reach adulthood age accessing services became an issue. One set of parents highlighted the lack of services for “adults who will always be children”.

There is so much discussion and focus on transition from children’s to adult services at present, which is great, but in many areas of the UK there are not age-appropriate services available to care for these young adults. I am a firm believer that teenagers and young adults are a unique population with very different needs to children and adults and therefore should have services designed to meet those needs.

The underlying life-limiting or life-threatening diagnosis is also an important factor when assessing individuals’ needs and designing services. In this study we have described the changing profiles of diagnoses within the population with a life-limiting condition and importantly, even though the prevalence of cancer diagnoses rises in young adulthood, non-malignant conditions have a higher total prevalence. These two diagnostic groups may have very different needs from a palliative care service. We have also shown that the prevalence of life-limiting conditions is higher in ethnic minority groups and deprived areas. These are also important factors to consider when designing services.

I hope that this paper will highlight the need for age-appropriate services for young adults in the UK with life-limiting or life-threatening conditions.

You can download a free copy of the longer article…

This post relates to the longer article, ‘Patterns of diagnoses among children and young adults with life-limiting conditions: A secondary analysis of a national dataset’ by Lorna K Fraser, Victoria Lidstone, Michael Miller, Jan Aldridge, Paul Norman, Patricia A McKinney and Roger C Parslow, Palliative Medicine 2014 28: 513. Published online before print 3 April 2014, doi: 10.1177/0269216314528743.

EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (Just follow the instructions in the top right-hand corner of EAPC home page to register or login, and scroll down to download the article).

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