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The patient’s perspective: a qualitative study of individual experience with decision-making, treatment, and recovery for resectable pancreatic cancer

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Abstract

Introduction

Pancreatic ductal adenocarcinoma cancer (PDAC) remains a challenging diagnosis. The likelihood of long-term survival is limited even for patients who undergo maximal medical therapy with systemic chemotherapy and surgical resection. Within this intensive process, there remains limited understanding of patients’ pretreatment expectations of PDAC treatment experience and their decision-making process.

Methods

PDAC patients who underwent chemotherapy and surgical resection were retrospectively identified. Semi-structured phone interviews were completed regarding patient experience with therapy. Qualitative descriptive analysis was performed, and categories, subcategories, and themes were determined.

Results

Fifteen patients were interviewed regarding their experience with PDAC treatment. An overall personal disease trajectory experience was identified with two phases. The first phase encompassed the patients’ treatment. In this phase, patients expressed a choice, non-choice regarding therapy decisions, viewing therapy as the only option. Misconceptions about the roles of therapies and expected experience of treatment were observed. The second phase focused on life after therapy. Patients reported persistent physical changes secondary to therapy. An overall realistic understanding of the patient’s limited prognosis was observed, with patients expressing appreciation of the life time gained as a benefit of treatment.

Conclusions

There remains critical areas for improvement in communication and care of patients with PDAC. Physicians should continue to ensure that patient’s goals and wishes are respected when making treatment decisions and confirm that patients understand the roles and limitations of prescribed therapies. Additionally, patients continue to have significant physical changes post treatment which should be assessed for and managed as appropriate to maintain quality of life.

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Author information

Authors and Affiliations

  1. Virginia Mason Franciscan Health, 1100 Ninth Ave, C6-GS, WA, 98101, Seattle, USA

    Lauren M. Wancata

  2. Yale School of Medicine, New Haven, CT, USA

    Kevin G. Billingsley

  3. Department of Surgery, Yale Cancer Center, Yale School of Medicine, New Haven, CT, USA

    Kevin G. Billingsley

  4. Department of Surgery, Oregon Health & Science University, Portland, OR, USA

    Jasmina Pailet, Skye C. Mayo & Brett C. Sheppard

  5. School of Nursing, Oregon Health & Science University, Portland, OR, USA

    Lissi Hansen

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  4. Skye C. Mayo
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  5. Brett C. Sheppard
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  6. Lissi Hansen
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Contributions

Study concept and design: Lauren Wancata, Kevin Billingsely, Jasmina Pailet, Lissi Hansen

Material preparation: Lauren Wancata, Kevin Billingsely, Jasmina Pailet

Data collection: Lauren Wancata, Jasmina Pailet

Data analysis: Lauren Wancata, Kevin Billingsely, Jasmina Pailet, Lissi Hansen

First draft was written by Lauren Wancata and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Lauren M. Wancata.

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Ethics approval

This study was approved by the Institutional Review Board of Oregon Health & Science University and performed in accordance of the tenets of the Declaration of Helsinki.

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Informed consent was obtained from all individual participants included in the study.

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Informed consent for inclusion in publication was obtained from all individual participants included in the study.

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The authors declare no competing interests.

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Wancata, L.M., Billingsley, K.G., Pailet, J. et al. The patient’s perspective: a qualitative study of individual experience with decision-making, treatment, and recovery for resectable pancreatic cancer. Support Care Cancer 30, 2581–2589 (2022). https://doi.org/10.1007/s00520-021-06690-z

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  • DOI: https://doi.org/10.1007/s00520-021-06690-z

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