Abstract
ContextPatients with advanced cancer commonly suffer from both distressing symptoms and cognitive impairment, but the effect of cognitive impairment on the reliability and validity of symptom self-report is unknown. ObjectivesTo evaluate the reliability and validity of symptom self-report in cancer outpatients with and without mild to moderate cognitive impairment. MethodsThis was an analysis of the longitudinal European Palliative Care Cancer Symptom study of adults with incurable cancer in specialized palliative care (30 centers across 12 countries). Patients who could not comply with the study because of severe cognitive impairment were excluded. Cognitive status on the Mini-Mental State Examination short version and nine symptoms (pain, tiredness, drowsiness, nausea, appetite, breathlessness, depression, anxiety, and well-being) using the revised Edmonton Symptom Assessment System were self-reported at baseline and one-month follow-up. Reliability was analyzed using intraclass correlation coefficients and validity using regression of each symptom with health-related quality of life (HrQoL) measured with European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 for Palliative Care. ResultsA total of 1047 patients were included: mean age of 62.9 years; 54.4% women; main cancer types were of digestive organs (26.6%), breast (21.6%), and lungs (21.2%). Cognitive impairment was present in 181 (17.3%) at baseline and associated with worse self-reported tiredness, drowsiness, appetite, and depression. Reliability (intraclass correlation coefficient) and validity (associations with HrQoL) were similar between people with/without cognitive impairment across the nine symptoms, except breathlessness, which showed a weaker relation to HrQoL in patients with cognitive impairment. Findings were robust in sensitivity analyses and after controlling for potential confounders. ConclusionIn advanced cancer, self-report of nine major symptoms was reliable and valid also in people with mild-to-moderate cognitive impairment. Trial RegistrationClinicalTrials.gov database (NCT01362816).
Highlights
Reliability and validity were similar between people with/without cognitive impairment across the nine symptoms, except breathlessness, which showed a weaker relation to health-related quality of life (HrQoL) in patients with cognitive impairment
Symptom assessment is essential for clinical evaluation and care in people with cancer for improved health-related quality of life (HrQoL) and reduced patient suffering
Study Design and Population This was a prospective longitudinal analysis of the European Palliative Care Cancer Symptom (EPCCS) study, the largest prospective longitudinal study to date of adults with incurable cancer enrolled in a palliative care program, with data from 30 palliative care centers across Europe, Australia, and Canada (12 countries).[23]
Summary
Symptom assessment is essential for clinical evaluation and care in people with cancer for improved health-related quality of life (HrQoL) and reduced patient suffering. Symptoms should be assessed using validated instruments, which have established reliability and enable valid interpretation and comparison, such as a 0e10 Numerical Rating Scale (NRS).[1,2] important throughout the disease trajectory, symptom assessment becomes even more important in advanced cancer with worsening symptom burden. At this stage, self-reported symptom measures might be influenced by clinical factors including cognitive impairment. This leads to poorer pain management among cognitively impaired3,10e13 and highlights the need to actively administer and thoroughly evaluate self-reported symptom scales in vulnerable patients to assess and document symptoms and optimize treatment
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