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Psychooncology. 2016 Feb;25(2):150-7. doi: 10.1002/pon.3887. Epub 2015 Jun 29.

A tsunami of unmet needs: pancreatic and ampullary cancer patients' supportive care needs and use of community and allied health services.

Author information

1
Gynaecological Cancers Group, QIMR Berghofer Medical Research Institute, Brisbane, Australia.
2
School of Public Health and Social Work, Queensland University of Technology, Brisbane, Australia.
3
Department of Medical Oncology, Prince of Wales Hospital, Sydney, Australia.
4
University of New South Wales, Sydney, Australia.
5
Sydney Nursing School, University of Sydney, Sydney, Australia.
6
Discipline of Surgery, University of Western Sydney, Sydney, Australia.
7
South Western Sydney Upper GI Surgical Unit, Bankstown Hospital, Sydney, Australia.
8
Cancer Research Division, Cancer Council NSW, Sydney, Australia.
9
School of Public Health, University of Queensland, Brisbane, Australia.
10
Department of Medical Oncology, Royal Brisbane and Women's Hospital, Brisbane, Australia.
11
University of Queensland, Brisbane, Australia.
12
Cancer Aetiology and Prevention Group, QIMR Berghofer Medical Research Institute, Brisbane, Australia.

Abstract

OBJECTIVE:

People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people's needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection.

METHODS:

Queensland pancreatic or ampullary cancer patients (n = 136, 54% of those eligible) completed a survey, which assessed 34 needs across five domains (Supportive Care Needs Survey-Short Form) and use of health services. Differences by resection were compared with Chi-squared tests.

RESULTS:

Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs, whereas health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included 'not being able to do things they used to do' (41%), 'concerns about the worries of those close' (37%) and 'uncertainty about the future' (30%). Patients with non-resectable disease reported greater individual information needs, but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease.

CONCLUSION:

Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

PMID:
26123474
DOI:
10.1002/pon.3887
[Indexed for MEDLINE]

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