A survey of patients' experience of pain and other symptoms while receiving care from palliative care services.
BACKGROUND
In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings.


OBJECTIVE
To explore patients' levels of pain and other symptoms while receiving care from PCSs.


METHODS
PCSs registered through Australia's national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale.


RESULTS
Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe 'other symptoms', 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients.


CONCLUSIONS
Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as 'severe'. Our findings highlight the importance of routine, comprehensive assessment of patients' concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting.
Palliative Care Outcomes Collaboration (PCOC), Cancer and Palliative Care Research and Evaluation Unit (CaPCREU), School of Surgery, The University of Western Australia, Perth, Western Australia, Australia Palliative Care Outcomes Collaboration, University of Wollongong, Wollongong, NSW, Australia.
Tanya
T
Pidgeon
Palliative Care Outcomes Collaboration (PCOC), Cancer and Palliative Care Research and Evaluation Unit (CaPCREU), School of Surgery, The University of Western Australia, Perth, Western Australia, Australia.
Claire E
CE
Johnson
Discipline Palliative and Supportive Services, Flinders University, Adelaide, South Australia, Australia.
David
D
Currow
Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, Queensland, Australia.
Patsy
P
Yates
Centre for Health Service Development, Australian Health Services Research Institute (ASHRI), University of Wollongong, Wollongong, New South Wales, Australia Palliative Care Outcomes Collaboration, University of Wollongong, Wollongong, NSW, Australia.
Maree
M
Banfield
Health Promotion Evaluation Unit, School of Sport Science, Exercise and Health, The University of Western Australia, Perth, Western Australia, Australia.
Leanne
L
Lester
Centre for Health Service Development, Australian Health Services Research Institute (ASHRI), University of Wollongong, Wollongong, New South Wales, Australia Palliative Care Outcomes Collaboration, University of Wollongong, Wollongong, NSW, Australia.
Sam F
SF
Allingham
Centre for Health Service Development, Australian Health Services Research Institute (ASHRI), University of Wollongong, Wollongong, New South Wales, Australia Palliative Care Outcomes Collaboration, University of Wollongong, Wollongong, NSW, Australia.
Sonia
S
Bird
Centre for Health Service Development, Australian Health Services Research Institute (ASHRI), University of Wollongong, Wollongong, New South Wales, Australia.
Kathy
K
Eagar
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000453:epidemiology*; D010166:Palliative Care / Q000706:statistics & numerical data*; D011788:Quality of Life; D013727:Terminal Care / Q000706:statistics & numerical data*; D055815:Young Adult
Pain; Psychological care; Quality of life; Social care; Symptoms and symptom management