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

• Published in: Psycho-oncology (Chichester, England) Vol. 25; no. 2; pp. 150 - 157
• Main Authors: Beesley, Vanessa L., Janda, Monika, Goldstein, David, Gooden, Helen, Merrett, Neil D., O'Connell, Dianne L., Rowlands, Ingrid J., Wyld, David, Neale, Rachel E.
• Format: Journal Article
• Language: English
• Published: England Blackwell Publishing Ltd 01.02.2016; Wiley Subscription Services, Inc
• Subjects: Adult; Aged; Ampulla of Vater; Cancer; Chi-square test; Common Bile Duct Neoplasms - psychology; Common Bile Duct Neoplasms - therapy; Community health care; Community mental health services; Disease; Female; Gastric cancer; Health care access; Health psychology; Health services; Health Services Needs and Demand - statistics & numerical data; Health status; Humans; Information; Information needs; Male; Medical prognosis; Medicine; Mental health care; Mental health services; Middle Aged; Needs; Needs Assessment - statistics & numerical data; Outcome Assessment, Health Care; Palliative care; Pancreatic cancer; Pancreatic Neoplasms; Pancreatic Neoplasms - psychology; Pancreatic Neoplasms - therapy; Patients; Personal relationships; Quantitative analysis; Queensland; Sexuality; Social Support; Socioeconomic Factors; Support services; Uncertainty; Uptake; Queensland; Queensland Australia; Australia
• ISSN: 1057-9249; 1099-1611
• DOI: 10.1002/pon.3887

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. Copyright © 2015 John Wiley & Sons, Ltd.