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Long-term positive psychological outcomes in an Australian pancreatic cancer screening program

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Abstract

Screening for pancreatic cancer (PC) in high-risk groups aimed to detect early cancers is currently done only in the research setting, and data on psychological outcomes of screening in these populations is scarce. To determine the psychological impact of a national Australian pancreatic screening program, a prospective study was conducted using validated psychological measures: impact of events scale (IES), psychological consequences questionnaire (PCQ) and the cancer worry scale. Measures were administered at baseline, 1-month and at 1-year post-enrolment and correlations with abnormal endoscopic ultrasound (EUS) results were calculated. Over a 6-year period, 102 participants were recruited to the screening program. Thirty-nine patients (38.2%) had an abnormal endoscopic ultrasound, and two patients (2.0%) were diagnosed with PC and two with other malignancies. Those with a personal history of cancer or a positive BRCA2 mutation demonstrated significantly increased worry about developing other types of cancer at baseline (p < 0.01). Irrespective of EUS result, there was a significant decrease of total IES score at 1 year (Z = − 2.0, p = 0.041). In patients with abnormal EUS results, there was a decrease in the total IES score at 1 year (Z = − 2.5, p = 0.011). In participants deemed to be most distressed at baseline based on their negative PCQ score, there was a significant decrease of the total PCQ (Z = − 3.2, p = 0.001), emotional (Z = − 3.0, p = 0.001), social (Z = 3.0, p = 0.001) and physical (Z = − 2.8, p = 0.002) subscale at 1-year post-intervention. This study provides evidence of the long-term psychological benefits of PC screening in high-risk patients. There was no negative impact of screening in the short-term and the positive benefits appeared at 1-year post-intervention irrespective of screening result.

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Acknowledgements

We would like to thank the participants for their involvement and the medical practitioners who referred their patients to the screening program. We would like to acknowledge Prof Kathy Tucker, Prof Alan Spiegelman and Dr Lesley Andrews for their expert advice on genetic counselling and testing and Dr Marcia Canto for her contribution to the initial screening program development. A special thanks is given to Prof Andrew Biankin, Prof Anthony Gill, Ms Amber Jones and Australian Pancreatic Cancer Genome Initiative network for their support and ongoing collaboration: http://pancreaticcancer.net.au/about-collaborators. We also acknowledge Ms Skye Mackay, who was the trial coordinator until 2017 and Ms Tanya Dwarte who is the current trial coordinator. Bettina Meiser is supported through a Senior Research Fellowship Level B from the National Health and Medical Research Council.

Funding

The Clinical Research Coordinator positions were supported by PanCare Foundation.

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Authors and Affiliations

  1. Department of Gastroenterology, St Vincent’s Hospital, Sydney, 390 Victoria St, Darlinghurst, NSW, 2010, Australia

    R. S. O’Neill, D. B. Williams & A. Stoita

  2. Prince of Wales Clinical School, University of New South Wales, Sydney, NSW, Australia

    B. Meiser

  3. St Vincent’s Clinical School, University of New South Wales, Sydney, NSW, Australia

    S. Emmanuel & A. Stoita

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  1. R. S. O’Neill
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  2. B. Meiser
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  3. S. Emmanuel
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  4. D. B. Williams
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Contributions

Dr O’Neill was involved in writing the manuscript and data analysis. Professor Bettina Meiser was involved in designing the psychological questionnaire and reviewing the manuscript. Dr David Williams contributed to the research design, provided revisions to ethics documents, performed screening and revised the final manuscript. Dr Sam Emmanuel was involved in statistical analysis. Dr Alina Stoita developed the screening program; prepared documents for ethics submission, assisted in participant recruitment, performed screening and provided revisions to the manuscript.

Corresponding author

Correspondence to A. Stoita.

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Conflict of interest

Robert O’Neill, Sam Emmanuel, David Williams and Alina Stoita declare they have no conflict of interest.

Ethical approval

All procedures performed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 [5]. Informed consent was obtained from all patients for being included in the study. Bettina Meiser had a remunerated consultant role with the company Astrazeneca with respect to an unrelated project. No animal studies were carried out by the authors for this article.

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Appendix: Inclusion criteria

Appendix: Inclusion criteria

Australian Pancreatic Cancer Screening Program

Inclusion criteria

High risk group 1: familial pancreatic cancer

  1. a.

    Aged 50–80 years (or 10 years younger than the youngest relative with PC, AND

  2. b.

    Member of a family with 2 or more blood relatives with PC on the same side of the family. If only 2 family members are affected, both must be an FDR of the individual being screened. If there are ≥ 3 affected family members, at least one must be an FDR of the individual being screened.

High risk group 2: Peutz–Jeghers syndrome

  1. a.

    Age > 30 years old and < 80 years old, AND

  2. b.

    Clinical diagnosis of Peutz-Jeghers Syndrome or carrier of a germline STK11 pathogenic variant.

High risk group 3: BRCA2 pathogenic variant carriers

  1. a.

    Age > 40 years old and < 80 years old (or 10 years younger than the youngest relative with PC) AND

  2. b.

    Patient is a carrier of a BRCA2 pathogenic variant AND

  3. c.

    There is ≥ 1 pancreatic cancer in the family (FDR or SDR, confirmed or likely carrier of the pathogenic variant)

High risk group 4: hereditary pancreatitis

  1. a.

    Age > 40 years old and < 80 years old (or 10 years younger than the youngest relative with PC) AND

  2. b.

    Previous diagnosis of Hereditary Pancreatitis or known carrier of a PRSS1 or SPINK1 pathogenic variant.

High risk group 5: PALB2 gene carrier*

  1. a.

    Age > 50 years old and < 80 years old (or 10 years younger than the youngest relative with PC) AND

  2. b.

    Patient is a carrier of a PALB2 pathogenic variant AND

  3. c.

    There is ≥ 1 pancreatic cancer in the family (FDR or SDR, confirmed or likely carrier of the pathogenic variant)

High risk group 6: lynch syndrome mutation carrier /hereditary non polyposis colorectal cancer mutation carrier (MLH1, PMS2, MSH6, MSH2 mutation)*

  1. a.

    Age > 50 years old and < 80 years old (or 10 years younger than the youngest relative with PC) AND

  2. b.

    Patient is a Lynch syndrome mutation carrier AND

  3. c.

    There is a ≥1 FDR with pancreatic cancer

High risk group 7: familial atypical multiple melanoma moles (FAMMM) syndrome (CDKN2A/p16 mutation carrier)*

  1. a.

    Age > 50 years old and < 80 years old (or 10 years younger than the youngest relative with PC) AND

  2. b.

    Patient is a carrier of p16/ CDKN2A pathogenic variant

*Groups 5, 6, 7 were added in 2018 and are not included in the current paper

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O’Neill, R.S., Meiser, B., Emmanuel, S. et al. Long-term positive psychological outcomes in an Australian pancreatic cancer screening program. Familial Cancer 19, 23–35 (2020). https://doi.org/10.1007/s10689-019-00147-3

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