How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study.

OBJECTIVE: To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0-25 years in Scotland with life-limiting conditions (LLCs). DESIGN: National cohort of CYP with LLCs using linked routinely collected healthcare data. SETTING: Scotland. PATIENTS: 20 436 CYP identified as having LLCs and resident in Scotland between 1 April 2009 and 31 March 2014. MAIN OUTCOME: Clinical stage based on emergency inpatient and intensive care unit admissions and date of death. RESULTS: Over 2200 CYP with LLCs in Scotland were unstable, deteriorating or dying in each year. Compared with 1-year-olds to 5-year-olds, children under 1 year of age had the highest risk of instability (OR 6.4, 95% CI 5.7 to 7.1); all older age groups had lower risk. Girls were more likely to be unstable than boys (OR 1.15, 95% CI 1.06 to 1.24). CYP of South Asian (OR 1.61, 95% CI 1.28 to 2.01), Black (OR 1.58, 95% CI 1.04 to 2.41) and Other (OR 1.33, 95% CI 1.02 to 1.74) ethnicity were more likely to experience instability than White CYP. Deprivation was not a significant predictor of instability. Compared with congenital abnormalities, CYP with most other primary diagnoses had a higher risk of instability; only CYP with a primary perinatal diagnosis had significantly lower risk (OR 0.23, 95% CI 0.19 to 0.29). CONCLUSIONS: The large number of CYP with LLCs who are unstable, deteriorating or dying may benefit from input from specialist paediatric palliative care. The age group under 1 and CYP of South Asian, Black and Other ethnicities should be priority groups.

Understanding the relationship transitions and associated end of life clinical needs of young adults with life-limiting illnesses: A triangulated longitudinal qualitative study.

BACKGROUND: Care of young adults with life-limiting illnesses can often be complex due to the fact that they are growing and developing within the continuing presence of their illness. There is little research conducted nationally and internationally, which has examined the life issues of young adults or taken a longitudinal approach to understand such issues over a period of time. AIM: To gain clear understanding of one particular and pertinent life issue-relationship transition-occurring in the context of being a young adult with a life-limiting illness and the clinical needs arising from this. DESIGN: This was a triangulated, longitudinal, qualitative study involving young adults with life-limiting illnesses and their significant others, namely, family members and healthcare professionals. Semi-structured interviews were conducted with participants and analysed using thematic analysis. Clinical case note reviews were also carried out. SETTING/PARTICIPANTS: A total of 12 young adults (aged between 17 and 23 years) from 2 hospices and 22 nominated significant others participated in a total of 58 interviews. RESULTS: Thematic analysis revealed 4 main themes and 11 subthemes. The main themes were 'Dependence dichotomy', 'In it together', 'Biographical uncertainty', and 'Conserving integrity'. These themes helped to establish the nature of relationship transitions that the young adult participants from the study experienced and additionally allowed insight into their possible needs at their end of life. CONCLUSION: This study has identified the nature of relationship transitions pertinent to young adults and has highlighted associated end of life clinical needs. This study can influence further research into the transitions and end of life needs of this particular patient group receiving palliative care, while informing the lacking evidence base which exists internationally.

Developing learning outcomes for medical students and foundation doctors in palliative care: a national consensus-seeking initiative in Scotland.

BACKGROUND: Undergraduate education in palliative care is essential if doctors are to be competent to care for dying patients and their families in a range of specialties and healthcare settings. However, creating space for this within existing undergraduate and foundation year curricula poses significant challenges. We aimed to develop consensus learning outcomes for palliative care teaching in the university medical schools in Scotland. METHODS: The General Medical Council (GMC) outlines a number of learning outcomes with clear relevance to palliative care. Leaders from the five Scottish medical schools identified and agreed a small number of outcomes, which we judged most relevant to teaching palliative care and collated teaching resources to support these. RESULTS: Consensus learning outcomes for undergraduate palliative care were agreed by our mixed group of clinician educators over a number of months. There were many secondary gains from this process, including the pooling of educational resources and best practice, and the provision of peer support for those struggling to establish curriculum time for palliative care. DISCUSSION: The process and outcomes were presented to the Scottish Teaching Deans, with a view to their inclusion in undergraduate and foundation year curricula. It is through a strong commitment to achieving these learning outcomes that we will prepare all doctors for providing palliative care to the increasing numbers of patients and families that require it.