Background: A substantial proportion of research in palliative care has focussed on measuring the level of symptom severity. Assessing distress from symptom burden can ensure care is based on patient needs. Factors that influence patient versus proxy-reporting of distress are unclear, especially within patients with advanced disease.
Aim: To examine the incidence of and factors associated with reports of symptom distress by patients with advanced disease and their proxies.
Design: National observational study involving patient and proxy-reported symptom distress data collected from Australian palliative care services using the Symptom Assessment Scale (SAS), with regression analysis completed.
Setting/participants: 21 services registered with PCOC providing care to patients with an advanced life-limiting illness, their caregivers and clinicians involved in proxy-reports of symptom distress.
Results: 16,158 Symptom Assessment Scale (SAS) assessments from 1,117 patients. Overall, the majority were patient-reports (61% patient versus 39% proxy). When adjusted for function and Palliative Care Phase, cancer patients self-reported 1.7 times more likely than those with non-malignant disease, and patients in the community were 3.0 times as likely to self-report as those in hospital. The incidence of patient reporting is statistically different by the Palliative Care Phase. Patients in unstable phase, were 38% more likely to self-report compared to those in the stable phase.
Conclusion: In patients with advanced disease, patient reporting of symptom distress is feasible in most scenarios of palliative care provision. Proxy reporting is more likely in patients with higher dependency needs, older age and in the last days of life. These findings have implications for nursing practice. The nurse plays an important role in facilitating patient-reports and deciding when proxy-reports are required. Targeted education and consumer engagement may be useful strategies for increasing patient-reported symptom distress in inpatient settings, older age and during the stable Palliative Care Phase