References
Mesothelioma palliative care needs: supporting patients and families with new research-based resources
Abstract
Background:
Mesothelioma is a rare cancer without cure. Clinical guidelines recommend the timely provision of palliative/supportive care; however, a new study identified barriers to achieving this ambition.
Objective:
The study aimed to explore palliative care needs and the role of Mesothelioma Clinical Nurse Specialists (MCNSs); and to develop resources to address study findings.
Methods:
The mixed-methods study included a literature review, focus groups, interviews and surveys.
Results:
The study highlighted the important role of the MCNSs in palliative care and the need to: address disjointed care; improve support for families; and explain the benefits of palliative care for patients/families. A co-production approach developed an animation for patients/families to demystify palliative care and explain the benefits of early-stage engagement; and an infographic targeted at community and primary care professionals. Recommendations for community nursing practice are described.
Mesothelioma is a rare cancer without cure, with 2400 deaths per year in the UK (Cancer Research UK, 2023). Most cases arise from occupational exposure to asbestos, and the time-lag between exposure and development of mesothelioma means that incidence rates peak in old age. The 2016-2018 statistics on mesothelioma show that the incidence is higher in males, with around 2200 new cases per year, compared to 470 in females (Cancer Research UK, 2023). Treatment options are limited and prognosis poor, with 1- and 3-year survival rates being 40% and 10%, respectively (Royal College of Physicians, 2018). Patients living with mesothelioma have palliative care needs from diagnosis onwards, with a high symptom burden of fatigue, dyspnoea, pain, weight loss, anxiety and low mood (Hoon et al, 2021). To address these needs, patients and their families require both well-coordinated care from healthcare professionals, and a willingness to engage with palliative care. Community and specialist nurses are key to achieving this ambition (Walshe, 2020; Harrison et al, 2022).
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