Symptom Burden and Shared Care Planning in an Oncology Nurse-Led Primary Palliative Care Intervention (CONNECT) for Patients with Advanced Cancer

Abstract

Purpose: Primary Palliative Care (PPC) interventions are needed to address unmet symptom needs within standard oncology care. We designed an oncology nurse-led PPC intervention using shared care planning to facilitate patient engagement. This analysis examines the prevalence and severity of symptoms reported by patients and how symptoms were addressed on shared care plans.Methods: Secondary analysis of a cluster randomized PPC intervention trial. Adult patients with metastatic solid tumors whose oncologist 'would not be surprised if the patient died within a year' were included. Twenty-three oncology nurses received PPC training and conducted up to three monthly visits with patients. Symptom prevalence and severity were assessed prior to each visit using the Edmonton Symptom Assessment Scale (ESAS; 9 symptoms ranked 1-10 with scores ≥4 indicating moderate severity). Nurses collaboratively developed treatment strategies with patients, targeting the most bothersome symptoms for improvement.Results: Among 571 nurse-led PPC visits with 235 patients, the most prevalent and severe symptoms were tiredness (reported at 86% of visits; ESAS ≥4 in 55% of visits), low sense of well-being (78%; ESAS ≥4 in 38%), and poor appetite (69%; ESAS ≥4 in 42%). Moderately severe symptoms were addressed on shared care plans ranging from 4% (drowsiness) to 35% (tiredness) of the time. Symptom management plans developed by PPC-trained oncology nurses primarily focused on non-pharmaceutical interventions (70%) compared to pharmaceutical interventions (30%). Conclusion:The symptoms that patients report most frequently and as most severe on shared care plans were addressed less frequently than expected. Further research is needed to understand how primary palliative care interventions can be designed to more effectively target and improve bothersome symptoms for patients with advanced cancer.

Nurses' experiences of using the Integrated Palliative care Outcome Scale with patients in specialized palliative care—A qualitative focus group study

“…Patients in need of palliative care have a range of different symptoms and concerns such as pain, anxiety, dyspnea, depression, anxiety, social and spiritual distress (Bandeali et al, 2020 ). A study of patients with metastatic cancer found that the most prevalent and severe self‐reported symptoms were tiredness, low sense of well‐being, and poor appetite (Mitchell et al, 2022 ). Patients receiving specialized palliative care also describe experiencing existential loneliness (Sjöberg et al, 2017 ).…”

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Patients with progressive incurable disease should have access to palliative care services, which proactively detect and address the problems of their conditions and the effect these problems have on them and their families (World Health Organization[WHO], 2020). Here, we use the term 'family' in its broadest sense, to include all persons who are significant to the patients.Patients in need of palliative care have a range of different symptoms and concerns such as pain, anxiety, dyspnea, depression, anxiety, social and spiritual distress (Bandeali et al, 2020).A study of patients with metastatic cancer found that the most prevalent and severe self-reported symptoms were tiredness, low sense of well-being, and poor appetite (Mitchell et al, 2022).Patients receiving specialized palliative care also describe experiencing existential loneliness (Sjöberg et al, 2017). Specialized palliative care is provided by specialists for seriously ill patients with complex problems (Payne et al, 2022).

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“…A study of patients with metastatic cancer found that the most prevalent and severe self-reported symptoms were tiredness, low sense of well-being, and poor appetite (Mitchell et al, 2022).…”