Abstract
BackgroundEurope faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this.MethodsTelephone survey with 9,344 individuals aged ≥16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As ‘burden to others’ showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression.ResultsOverall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80).ConclusionsWhen imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis.
Highlights
Europe faces an enormous public health challenge with aging populations and rising cancer incidence
Clinicians responsible for breaking bad news to patients and families are aware of risks, symptoms and problems associated with various cancers and their treatments, there is little evidence to guide them on what the level of public understanding is [5]
A well informed clinician will know that symptom burden in advanced cancer is high, with pain, breathlessness, and fatigue occurring in over 50% of patients [7]. They will know that impeccable assessment and advanced symptom management grounded on palliative care will control most symptom discomfort [8]
Summary
Europe faces an enormous public health challenge with aging populations and rising cancer incidence. Clinicians responsible for breaking bad news to patients and families are aware of risks, symptoms and problems associated with various cancers and their treatments, there is little evidence to guide them on what the level of public understanding is [5]. This is important to ensure appropriate communication from the point of diagnosis. A well informed clinician will know that symptom burden in advanced cancer is high, with pain, breathlessness, and fatigue occurring in over 50% of patients [7]. Cross-national research into this topic is important to inform European end of life care policy, education, and research [12]
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