Gemma Ingham1, Katalin Urban2, Samuel F Allingham3, Megan Blanchard4, Celia Marston5, David C Currow6. 1. Palliative Care Department, Prince of Wales Hospital, Randwick, Australia. Electronic address: gemma.ingham24@gmail.com. 2. Palliative Care Department, Prince of Wales Hospital, Randwick, Australia. 3. Australian Health Services Research Institute (AHSRI), University of Wollongong, Wollongong, Australia. 4. Palliative Care Outcomes Collaboration, University of Wollongong, Wollongong, Australia. 5. Peter McCallum Cancer Centre, Melbourne, Australia; Royal Melbourne Hospital, Melbourne, Australia; Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Australia. 6. IMPACCT, Faculty of Health, University of Technology Sydney, Ultimo, Australia; Wolfson Palliative Care Research Centre, University of Hull, Hull, UK.
Abstract
CONTEXT: Fatigue is the most commonly reported symptom in life-limiting illnesses, although not much is known about the distress it causes patients as they approach death. OBJECTIVES: To map the trajectory of distress from fatigue reported by an Australian palliative care population in the last 60 days leading up to death. METHODS: A prospective, longitudinal, consecutive cohort study using national data from the Australian Palliative Care Outcomes Collaboration between July 1, 2013, and December 31, 2018. Patients were included if they had at least one measurement of fatigue on a 0-10 numerical rating scale in the 60 days before death. Descriptive statistics were used to analyse patients by diagnostic cohort and functional status. RESULTS: A total of 116,604 patients from 203 specialist palliative care services were analyzed, providing 501,104 data points. Distress from fatigue affected up to 80% of patients referred to palliative care, with the majority experiencing moderate or severe distress. Malignant and nonmalignant diagnoses were equally affected, with the neurological cohort showing the greatest variability. The degree of distress correlated with a patient's functional level; it worsened as a patient's function declined until a patient became bedbound when the reporting of distress reduced. CONCLUSIONS: Distress from fatigue is high in this cohort of patients. Interventions to reduce this distress need to be a research priority.
CONTEXT: Fatigue is the most commonly reported symptom in life-limiting illnesses, although not much is known about the distress it causes patients as they approach death. OBJECTIVES: To map the trajectory of distress from fatigue reported by an Australian palliative care population in the last 60 days leading up to death. METHODS: A prospective, longitudinal, consecutive cohort study using national data from the Australian Palliative Care Outcomes Collaboration between July 1, 2013, and December 31, 2018. Patients were included if they had at least one measurement of fatigue on a 0-10 numerical rating scale in the 60 days before death. Descriptive statistics were used to analyse patients by diagnostic cohort and functional status. RESULTS: A total of 116,604 patients from 203 specialist palliative care services were analyzed, providing 501,104 data points. Distress from fatigue affected up to 80% of patients referred to palliative care, with the majority experiencing moderate or severe distress. Malignant and nonmalignant diagnoses were equally affected, with the neurological cohort showing the greatest variability. The degree of distress correlated with a patient's functional level; it worsened as a patient's function declined until a patient became bedbound when the reporting of distress reduced. CONCLUSIONS: Distress from fatigue is high in this cohort of patients. Interventions to reduce this distress need to be a research priority.