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Open and honest communication between families is integral to caring for patients with progressive terminal illnesses. Talking to children about death, dying and bereavement, however, has always been a taboo subject. The specialist palliative care team in Gateshead NHS Foundation Trust share how they succesfully collaborated with a local secondary school to encourage young people to talk about these subjects.

Introduction The Ambitions for Palliative and End of Life Care Partnership (2015) established a national framework with six ambitions, one of which recognises the importance of engaging local communities including schools. Over the past two years, Gateshead NHS Foundation Trust has established a schools engagement project which involves all local secondary schools. This project demonstrated the value of listening to young people and thus providing an opportunity for them to share their understanding and experiences. The second phase of the project then sought to address gaps in understanding identified through the development of a resource that could be embedded into the personal development curriculum of any school wishing to engage with this important subject. Methods Initial meetings with senior leaders in partner schools were used for information gathering about what is currently taught in relation to this area and the broader personal development curriculum. An assessment of possible curriculum content and an outline proposal was developed by the Specialist Palliative Care Team in collaboration with one of the link schools. This school also agreed to participate in a delivery pilot of these materials as well as shape the resources to ensure that they were age appropriate and aligned to the broader aims of the personal development curriculum. Results A curriculum model was developed to include the following topics: History of dying, cultural aspects and changes in society Public perception of dying and whether we should talk about it DNACPR An overview of palliative care in the UK Ethical issues at the end of life Accompanying resource material was developed by the Specialist Palliative Care Team in collaboration with the school. Conclusions This important work has the potential to increase the understanding of palliative care and end of life issues amongst young people in Gateshead and in schools more widely.

Objective To evaluate effects of remote monitoring of adjuvant chemotherapy related side effects via the Advanced Symptom Management System (ASyMS) on symptom burden, quality of life, supportive care needs, anxiety, self-efficacy, and work limitations. Design Multicentre, repeated measures, parallel group, evaluator masked, stratified randomised controlled trial. Setting Twelve cancer centres in Austria, Greece, Norway, Republic of Ireland, and UK. Participants 829 patients with non-metastatic breast cancer, colorectal cancer, Hodgkin’s disease, or non-Hodgkin’s lymphoma receiving first line adjuvant chemotherapy or chemotherapy for the first time in five years. Intervention Patients were randomised to ASyMS (intervention; n=415) or standard care (control; n=414) over six cycles of chemotherapy. Main outcome measures The primary outcome was symptom burden (Memorial Symptom Assessment Scale; MSAS). Secondary outcomes were health related quality of life (Functional Assessment of Cancer Therapy—General; FACT-G), Supportive Care Needs Survey Short-Form (SCNS-SF34), State-Trait Anxiety Inventory—Revised (STAI-R), Communication and Attitudinal Self-Efficacy scale for cancer (CASE-Cancer), and work limitations questionnaire (WLQ). Results For the intervention group, symptom burden remained at pre-chemotherapy treatment levels, whereas controls reported an increase from cycle 1 onwards (least squares absolute mean difference −0.15, 95% confidence interval −0.19 to −0.12; P Conclusions Significant reduction in symptom burden supports the use of ASyMS for remote symptom monitoring in cancer care. A “medium” Cohen’s effect size of 0.5 showed a sizable, positive clinical effect of ASyMS on patients’ symptom experiences. Remote monitoring systems will be vital for future services, particularly with blended models of care delivery arising from the covid-19 pandemic. Trial registration Clinicaltrials.gov NCT02356081 .

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