CoChat
Sign Up
Cited by 42Cancer survivorship and carePancreatic and Hepatic Oncology ResearchPatient-Provider Communication in Healthcare

Experiences and supportive care needs of UK patients with pancreatic cancer: a cross-sectional questionnaire survey

Open access
Watson, Eila K, Brett, Jo, Hay, Harriet, Witwicki, Cara, Perris, Anna, Poots, Alan J, Sizmur, Steve, Soonawalla, Zahir +1 more·2019·BMJ Open
DOI 10.1136/bmjopen-2019-032681PMC PMC6858107
Open this paper in CoChat — free accountOpen PDF

Abstract

Objectives: Patients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer. This survey aimed to describe their experiences of care and supportive care needs to inform future service provision. Design: Cross-sectional questionnaire survey of patients with pancreatic cancer in the UK. Setting: Individuals at any stage along the care pathway were recruited via five National Health Service sites in the UK, and online, from January to June 2018. Participants: 274 individuals completed the questionnaire (78% (215) were completed online). Approximately half of participants were diagnosed within the last year (133/274). Of 212 providing gender details, 82 were male and 130 were female. Ninety per cent (192/213) described themselves as White British. Primary outcome measures: Experiences of communication and information; involvement in treatment decisions; supportive care needs. Results: Communication with, and care received from, clinical staff were generally reported positively. However, 29% (75/260) of respondents did not receive enough information at diagnosis, and 10% (25/253) felt they were not involved in decisions about their treatment, but would have liked to be. Supportive care needs were greatest in psychological and physical/daily living domains. 49% (108/221) of respondents reported one or more moderate/high unmet needs within the last month, of which the most commonly reported were: dealing with uncertainty about the future; fears about the cancer spreading; not being able to do things they used to; concerns about those close to them; lack of energy; anxiety; feelings of sadness and feeling down/depressed. Experiences were poorer, and unmet supportive care needs greater, in patients with unresectable disease. Conclusions: Patients with pancreatic cancer have unmet information and support needs across the cancer trajectory. Psychological and physical support appears to be the biggest gap in care. Needs should be assessed and supportive care interventions implemented from the point of diagnosis, and monitored regularly to help patients live as good a quality of life as possible.

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Integrity signals

Registry

Crossref · 10.1136/bmjopen-2019-032681

Cites

1 of 1 references verified0 citation errors · 0 not checkable

Statistics

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

  • A survey of pancreatic cancer patients' experience with delivery of news found two-thirds of patients felt their diagnosis was not given sensitively.

    “In parallel with this, a survey of pancreatic cancer patients’ experience with delivery of news found two-third of patients felt their diagnosis was not given sensitively [40].”

    From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [40]

    The Results section (Experiences of communication and information; page unavailable) reports that 38% of patients felt their diagnosis had definitely been given sensitively. The remaining 62% did not necessarily feel it was given insensitively; the cited passage does not support that stronger interpretation. (LLM, conf=0.88)

    Experimental — accuracy not yet measured

  • In the same patient survey, one-third of patients felt staff did not talk to them about their care and treatment in a way that they could understand.

    “This finding again echoes findings from the same patient survey wherein one-third of patients felt staff did not talk to them about their care and treatment in a way that they could understand [40].”

    From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [40]

    The Results section (‘Involvement in treatment decision-making’; page not available) reports that 164/251 patients said staff *definitely* talked about care and treatment in a way they could understand. Roughly one-third did not give that definite response, but the paper does not say they felt staff did not talk to them understandably; the claim turns a less-positive response into an outright negative one. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Cites

Flagged first, then by citations

Research works printed but not linked: 21

  1. [3]Neoptolemos JP, Palmer DH, Ghaneh P, et al Comparison of adjuvant gemcitabine and capecitabine with gemcitabine monotherapy in patients with resected pancreatic cancer (ESPAC-4): a multicentre, open-label, randomised, phase 3 trial. The Lancet 2017; 389: 1011– 24. 10.1016/S0140-6736(16)32409-6 28129987 · DOI
  2. [4]Sugimoto H, Kawashima H, Ohno E, et al The prognostic factors and trajectory of HRQOL in patients with pancreatic cancer who received psychiatric intervention. J Gastroenterol Hepatol 2016; 31: 685– 90. 10.1111/jgh.13172 26412310 · DOI
  3. [5]Bauer MR, Bright EE, MacDonald JJ, et al Quality of life in patients with pancreatic cancer and their caregivers: a systematic review. Pancreas 2018; 47: 368– 75. 10.1097/MPA.0000000000001025 29521939 · DOI · Paper page
  4. [6]Doyle C, Lennox L, Bell D A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open 2013; 3: e001570 10.1136/bmjopen-2012-001570 PMC3549241 23293244 · DOI
  5. [7]Abel GA, Saunders CL, Lyratzopoulos G Post-sampling mortality and non-response patterns in the English cancer patient experience survey: implications for epidemiological studies based on surveys of cancer patients. Cancer Epidemiol 2016; 41: 34– 41. 10.1016/j.canep.2015.12.010 26797675 PMC4819677 · DOI
  6. [10]Boyes A, Girgis A, Lecathelinais C Brief assessment of adult cancer patients' perceived needs: development and validation of the 34-item supportive care needs survey (SCNS-SF34). J Eval Clin Pract 2009; 15: 602– 6. 10.1111/j.1365-2753.2008.01057.x 19522727 · DOI · Paper page
  7. [12]Tourangeau R Cognitive sciences and survey methods: Jabine T, Straf M, Tanur J, Cognitive aspects of survey methodology: building a bridge between disciplines. Washington: National Academy Press, 1984: 73– 100.
  8. [13]Collins D Pretesting survey instruments: an overview of cognitive methods. Qual Life Res 2003; 12: 229– 38. 10.1023/A:1023254226592 12769135 · DOI
  9. [14]Rees JRE, Macefield RC, Blencowe NS, et al A prospective study of patient reported outcomes in pancreatic and peri-ampullary malignancy. World J Surg 2013; 37: 2443– 53. 10.1007/s00268-013-2104-8 23716026 · DOI
  10. [15]Ziebland S, Chapple A, Evans J Barriers to shared decisions in the most serious of cancers: a qualitative study of patients with pancreatic cancer treated in the UK. Health Expect 2015; 18: 3302– 12. 10.1111/hex.12319 25496598 PMC5810685 · DOI
  11. [16]Ibrahim F, Sandström P, Björnsson B, et al 'I want to know why and need to be involved in my own care…': a qualitative interview study with liver, bile duct or pancreatic cancer patients about their experiences with involvement in care. Support Care Cancer 2019; 27: 2561– 7. 10.1007/s00520-018-4548-8 30430301 PMC6541569 · DOI
  12. [17]Roberts KJ, Bannister CA, Schrem H Enzyme replacement improves survival among patients with pancreatic cancer: results of a population based study. Pancreatology 2019; 19: 114– 21. 10.1016/j.pan.2018.10.010 30385188 · DOI
  13. [18]National Institute for Health and Care Excellence Pancreatic cancer in adults: diagnosis and management. NICE, London, 2018 Available: https://www.nice.org.uk/guidance/ng85/chapter/Recommendations#nutritional-management 29505215
  14. [19]Gooden HM, White KJ Pancreatic cancer and supportive care--pancreatic exocrine insufficiency negatively impacts on quality of life. Support Care Cancer 2013; 21: 1835– 41. 10.1007/s00520-013-1729-3 23397095 · DOI · Paper page
  15. [20]Wang T, Molassiotis A, Chung BPM, et al Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat Care 2018; 17: 96 10.1186/s12904-018-0346-9 30037346 PMC6057056 · DOI · Paper page
  16. [21]Beesley VL, Janda M, Goldstein D, et al A tsunami of unmet needs: pancreatic and ampullary cancer patients' supportive care needs and use of community and allied health services. Psychooncology 2016; 25: 150– 7. 10.1002/pon.3887 26123474 · DOI
  17. [23]Hassan S, Bennett K, Serfaty M Delivering cognitive behavioural therapy to advanced cancer patients: a qualitative exploration into therapists' experiences within a UK psychological service. Clin Psychol Psychother 2018; 25: 565– 74. 10.1002/cpp.2190 29575210 · DOI
  18. [24]Sun V, Ruel N, Chung V, et al Pilot study of an interdisciplinary supportive care planning intervention in pancreatic cancer. Support Care Cancer 2016; 24: 3417– 24. 10.1007/s00520-016-3155-9 26984248 PMC4919144 · DOI
  19. [25]Yeo TP, Burrell SA, Sauter PK, et al A progressive postresection walking program significantly improves fatigue and health-related quality of life in pancreas and periampullary cancer patients. J Am Coll Surg 2012; 214: 463– 75. 10.1016/j.jamcollsurg.2011.12.017 22321518 · DOI
  20. [26]Arthur AE, Delk A, Demark-Wahnefried W, et al Pancreatic cancer survivors' preferences, barriers, and facilitators related to physical activity and diet interventions. J Cancer Surviv 2016; 10: 981– 9. 10.1007/s11764-016-0544-5 27138993 PMC5086446 · DOI
  21. [27]Janda M, Neale RE, Klein K, et al Anxiety, depression and quality of life in people with pancreatic cancer and their carers. Pancreatology 2017; 17: 321– 7. 10.1016/j.pan.2017.01.008 28153446 · DOI · Paper page

Cited by

Sorted by citations

Authors
Watson, E. K., Brett, J., Hay, H., Witwicki, C., Perris, A., Poots, A. J., Sizmur, S., Soonawalla, Z., & Tallett, A.
Affiliations
  • Oxford Brookes University (GB)
  • Picker Institute Europe (GB)
  • Oxford University Hospitals NHS Trust (GB)
Corresponding author
Watson, Eila K
ORCID
Venue
BMJ Open
Publisher
BMJ
Published
2019-11
Volume
9
Issue
11
Pages
e032681
ISSN
2044-6055 (ISSN-L)
DOI
10.1136/bmjopen-2019-032681
PMC
PMC6858107
OpenAlex
W2988866913
Cited by
42
References
1
Citations by year
2026: 5 · 2025: 9 · 2024: 5 · 2023: 5 · 2022: 12 · 2021: 5 · 2020: 1
FWCI
1.88
Type
journal article
Language
en
Open access
Licence
cc-by-nc
Locations
  • BMJ Open (publishedVersion, cc-by-nc)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by-nc)
  • PubMed Central (publishedVersion, cc-by-nc)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
  • HighWire Press Open Archive (submittedVersion)
  • Radar (Oxford Brookes University) (submittedVersion, cc-by-nc)
Funders
  • Pancreatic Cancer UK (2017)
  • Shire Pharmaceuticals UK
  • The Fiorina Fund
Topics
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Health Sciences › Medicine › Oncology › Pancreatic and Hepatic Oncology Research
  • Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
Keywords
pancreatic cancer, patient experience, supportive care needs, unmet needs, shared decision-making, psychological support, physical support, everyday life, anxiety, depression, unresectable disease, quality of life, patient involvement in treatment decisions
MeSH terms
Decision Making, Shared, Communication, Cross-Sectional Studies, Female, United Kingdom, Health Surveys, Humans, Male, Palliative Care, Pancreatic Neoplasms, Patient Education as Topic, Physician-Patient Relations, Quality of Life, Social Support, Patient Satisfaction, Cost of Illness

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review