title: A tsunami of unmet needs: pancreatic and ampullary cancer patients' supportive care needs and use of community and allied health services.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Gynaecological Cancers Group, QIMR Berghofer Medical Research Institute, Brisbane, Australia.
authors.forename: Vanessa L
authors.initials: VL
authors.lastname: Beesley
authors.affiliation: School of Public Health and Social Work, Queensland University of Technology, Brisbane, Australia.
authors.forename: Monika
authors.initials: M
authors.lastname: Janda
authors.affiliation: Department of Medical Oncology, Prince of Wales Hospital, Sydney, Australia.|University of New South Wales, Sydney, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Goldstein
authors.affiliation: Sydney Nursing School, University of Sydney, Sydney, Australia.
authors.forename: Helen
authors.initials: H
authors.lastname: Gooden
authors.affiliation: Discipline of Surgery, University of Western Sydney, Sydney, Australia.|South Western Sydney Upper GI Surgical Unit, Bankstown Hospital, Sydney, Australia.
authors.forename: Neil D
authors.initials: ND
authors.lastname: Merrett
authors.affiliation: Cancer Research Division, Cancer Council NSW, Sydney, Australia.
authors.forename: Dianne L
authors.initials: DL
authors.lastname: O'Connell
authors.affiliation: School of Public Health, University of Queensland, Brisbane, Australia.
authors.forename: Ingrid J
authors.initials: IJ
authors.lastname: Rowlands
authors.affiliation: Department of Medical Oncology, Royal Brisbane and Women's Hospital, Brisbane, Australia.|University of Queensland, Brisbane, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Wyld
authors.affiliation: Cancer Aetiology and Prevention Group, QIMR Berghofer Medical Research Institute, Brisbane, Australia.
authors.forename: Rachel E
authors.initials: RE
authors.lastname: Neale
mesh_terms: D000328:Adult; D000368:Aged; D014670:Ampulla of Vater; D003138:Common Bile Duct Neoplasms / Q000523:psychology* / Q000628:therapy*; D005260:Female; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment / Q000706:statistics & numerical data; D017063:Outcome Assessment, Health Care; D010190:Pancreatic Neoplasms / Q000523:psychology* / Q000628:therapy*; D011793:Queensland; D012944:Social Support; D012959:Socioeconomic Factors