“Help me figure this out”: Qualitative explorations of patient experiences with cancer pathology reports

https://doi.org/10.1016/j.pec.2020.07.020Get rights and content

Highlights

  • The cancer pathology report is a critical tool for decision-making, but is not patient-centered.

  • We held focus groups to understand patient experiences receiving and reviewing pathology reports.

  • Participant experiences with pathology reports were fraught with confusion and variability.

  • Pathology report language and format impact patients’ ability to participate in decision-making.

  • More patient-centered approaches to pathology report design are needed.

Abstract

Objective

For patients with a new cancer diagnosis, the pathology report is a critical tool to support diagnosis and decision-making, yet they are designed for providers, not patients. We sought to qualitatively explore patients’ experiences receiving and interpreting pathology reports for breast and colorectal cancers.

Methods

We conducted four focus groups with patients (n = 23) who had received diagnostic or surgical pathology reports for breast cancer, colorectal cancer or polypectomy. Focus groups discussed patients’ experiences with pathology reports and recommendations for improving the patient-centeredness of report design. Focus groups were transcribed and thematic analysis was used to explore patient perspectives.

Results

Participants described experiences with pathology reports that were fraught with confusion and variability. Three central themes were identified related to how 1) the experience receiving the pathology report, 2) the pathology report language, and 3) the format of pathology reports all influence patient understanding and ability to engage in treatment decision-making.

Conclusion

Due to their complex medical language and challenging framing, traditional pathology reports can contribute to the confusion and uncertainty patients experience as they navigate a new cancer diagnosis.

Introduction

Cancer is the second leading cause of mortality in the United States and a leading cause of morbidity [1]. 9.4 % of all US adults have received a cancer diagnosis [2]; among the most common cancer diagnoses are breast and colorectal cancers. In 2019, an estimated 271,270 new cases of breast cancer will be diagnosed in the United States [3], representing 30 % of new cancer cases in women. An additional 101,420 patients will be newly diagnosed with colorectal cancer. Colorectal cancers are the third most commonly occurring cancers across sexes, accounting for 9% and 8% of new cases in men and women, respectively [3].

A new diagnosis of cancer initiates an involved process whereby providers and patients work through complex treatment decision-making, often choosing between surgical procedures, radiation therapy, chemotherapy, and pharmacotherapies. A patient’s cancer treatment plan will therefore be dependent on considerations of multiple clinical and patient characteristics, as well as patient preferences. The cancer pathology report, prepared by a pathologist, is an essential diagnostic tool, usually comprising a gross description, a microscopic description, stage, grade, and the results of any cancer-specific tests ordered, like immunohistochemistry or genetic testing. [4] Yet pathology reports are prepared with the cancer provider—not the patient—as the intended audience. A systematic review of the pathology literature demonstrated no research that considered patients as the target audience of pathology reports and no studies that examined the health literacy necessary to understand a pathology report [5].

Although most disclosure of pathology results occurs directly between a patient and their cancer provider, recent policy changes such as Meaningful Use and the Health Information Technology for Electronic and Clinical Health (HITECH) Act of 2009 continue to give patients unprecedented access to their medical records [6]. Test results, such as pathology reports, are often the documents patients access the most in their records, and may access before their discussions with providers [6,7]. For example, an analysis of 6495 cancer patients with an active patient portal account found that 37 % of patients viewed test results in the portal, which was the most common portal activity.[7] Increasing patient access to medical records has the potential to empower patients to take a more active role in their care [[8], [9], [10]]. Yet, in order to achieve this objective, health systems must start to recognize patients as a core stakeholder in the design of clinical documentation. In prior work, this team explored patient perspectives on cancer pathology reports for prostate and bladder cancers, using learnings to successfully develop tools for more patient-centered pathology tools [11]. Given that breast and colorectal cancer represent two of the most significant cancer types, but have quite different histoimmunological factors involved in diagnosis and treatment as compared to prostate and bladder cancers, we sought to qualitatively explore the experiences of patients who have received a pathology report for a potential breast or colorectal cancer diagnosis. This work was the formative phase of a project aiming to develop patient-centered tools to support pathology report interpretation for breast and colorectal cancers.

Section snippets

Methods

This study took place at the University of Washington (UW) Medicine health system and Seattle Cancer Care Alliance, a consortium of cancer care providers in the greater Seattle area. The study team partnered with a Clinical Advisory Committee comprised of pathologists, oncologists, surgical oncologists, and clinical care team members involved in breast or colorectal cancer care, and a Patient Advisory Committee, comprised of patient advocates with lived experience with cancer, to advise on all

Results

A total of four focus groups were held (n = 23), with participants reflecting experiences with pathology reports for colorectal cancer screening (polypectomy, n = 8), colorectal cancer (surgical, n = 7), and breast cancer (surgical & core biopsy, n = 8). Participant ages ranged from 37 to 74 with an average age of 56. Overall, 82 % of participants were female (the higher proportion female reflecting the breast cancer population), and 9 % were non-white (see Table 2 for additional participant

Discussion

Receiving a cancer diagnosis is a daunting event, and access to timely and understandable information can play a key role in a patient’s ability to understand their diagnosis and move forward with treatment decision-making in partnership with their care team. [16] In our study, participants described their pathology reports as instrumental to their cancer care, yet simultaneously reported that their inability to fully understand their reports presented significant obstacles to their use. Due to

Funding

Research reported in this work was funded through an American Cancer Society (ACS) Award (RSG-16-162-01-CPHPS). The statements presented in this work are solely the responsibility of the author(s) and do not necessarily represent the views of the American Cancer Society.

CRediT authorship contribution statement

Elizabeth J. Austin: Conceptualization, Methodology, Formal analysis, Writing - original draft, Project administration. Jenney R. Lee: Methodology, Data curation, Formal analysis, Writing - original draft. Brandelyn Bergstedt: Conceptualization, Resources, Validation. Anita Isler Mitchell: Conceptualization, Validation. Sara H. Javid: Conceptualization, Validation. Cynthia W. Ko: Conceptualization, Validation. John L. Gore: Conceptualization, Methodology, Writing - review & editing,

Declaration of Competing Interest

The authors (EA, JL, BB, AM, SJ, CK, JG) do not have any personal, professional, or financial conflicts of interest to disclose for this work. The authors did not work with or were otherwise influenced by any external sponsors for this work.

Acknowledgements

We would like to acknowledge the contributions of the members of the study’s Patient Advisory Committee and Clinical Advisory Committee throughout this work.

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