Clinical heterogeneity of adolescents referred to paediatric palliative care; a quantitative observational study

Adolescents with life-limiting conditions are distinct from children or older adults in their palliative needs and developmental stage, yet, there is limited literature addressing this population. Our aim was to describe the characteristics of the adolescent population, aged 13-18, who have received specialist palliative care in the Republic of Ireland, from 2019 to 2022 inclusive.

This study examined medical records from the national paediatric palliative care centre and a radiation oncology network. These two centres hold medical records for all adolescents linked to paediatric specialist palliative care nationally.

Of the 145 patients identified 58 (40.0 %) had cancer and 87 (60.0 %) a non-cancer diagnosis. Those with a non-cancer diagnosis were subdivided into those with severe neurological impairment (n=56, 38.6 %) and those without (n=31, 21.4 %). All groups had a high prevalence of physical symptoms. Just under half of those with cancer had psychological symptoms (n=26, 44.8 %). The majority of those with severe neurological impairment required medical devices/technology in the home, with 48 (85.7 %) requiring feeding devices and 33 (58.9 %) requiring respiratory support devices. Nearly a half of the adolescents had died at the time of the study (n=69, 47.6 %). Of these, the majority (n=44, 63.8 %) died at home and 9 (13.0 %) were referred less than one month before their death.

The high symptom burden of these young people highlights the need for early access to palliative care professionals with an appropriate skillset and access to quality, equitable psychological supports for this group.