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What is Your Understanding of Your Illness? A Communication Tool to Explore Patients’ Perspectives of Living with Advanced Illness

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ABSTRACT

BACKGROUND

Provider communication courses and guidelines stress the use of open-ended questions, such as “what is your understanding of your illness?,” to explore patients’ perceptions of their illness severity, yet descriptions of patients’ responses are largely absent from the current literature. These questions are most often used by clinicians as they deliver bad news to cancer patients or address code status at the end of life, but have not been well studied in other diseases or earlier in the disease course.

OBJECTIVES

To explore the responses of patients living with serious illness to the question “what is your understanding of your illness?” and to identify similarities and differences in themes and language used by cancer and non-cancer patients to discuss their illness.

DESIGN

We conducted a qualitative analysis of patients’ responses to “what is your understanding of your illness?”

PARTICIPANTS

Two hundred nine subjects, 69 with cancer, 70 CHF, and 70 COPD, who had an estimated 50 % 2-year survival. Mean age was 66 years.

APPROACH

Responses were recorded at the baseline interview of a larger, longitudinal study of patients with advanced life-limiting illness (cancer, CHF, or COPD). After thematic content analysis using open coding, investigators conducted pattern analysis to examine variation associated with diagnosis.

RESULTS

We identified five major themes: naming the diagnosis or describing the pathophysiology, illness history, prognosis, symptoms, and causality. Responses varied by diagnosis. Cancer patients’ responses more often included specific diagnostic details and prognosis, while non-cancer patients referenced symptoms and causality.

CONCLUSIONS

Patients’ responses to the open-ended question “what is your understanding of your illness?” can provide the clinician with important information and insight on how they view their illness in a non-acute setting. The identified themes can serve as a foundation for patient-centered communication strategies as we strive to build a mutual understanding of illness with patients.

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Acknowledgements/Funding Sources

This material is the result of work supported with resources and the use of facilities at the Durham NC VA Medical Center. The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.

This research was supported by a grant from the NIH/NINR RFP PA-00-127 “Trajectories of Serious Illness Patients and Caregivers” and the 5K08AG028975 Beeson Career Development Award in Aging Research (KSJ).

Conflict of Interest

The authors declare that they do not have a conflict of interest.

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Authors and Affiliations

  1. Center for Health Services Research in Primary Care, Durham Veterans Affairs Medical Center, Durham, NC, USA

    Deborah A. Morris MD, Kimberly S. Johnson MD, Natalie Ammarell PhD, James A. Tulsky MD & Karen E. Steinhauser PhD

  2. Geriatrics Research and Clinical Center, Durham Veterans Affairs Medical Center, Durham, NC, USA

    Kimberly S. Johnson MD

  3. Center for Palliative Care, Duke University, Durham, NC, USA

    James A. Tulsky MD & Karen E. Steinhauser PhD

  4. Department of Medicine, Duke University School of Medicine, Durham, NC, USA

    Deborah A. Morris MD, Kimberly S. Johnson MD & James A. Tulsky MD

  5. Division of Geriatrics, Duke University School of Medicine, Durham, NC, USA

    Kimberly S. Johnson MD

  6. Duke University School of Nursing, Durham, NC, USA

    Natalie Ammarell PhD & James A. Tulsky MD

  7. University of Pittsburgh School of Medicine and Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, PA, USA

    Robert M. Arnold MD

  8. VA and Duke Medical Centers, 411 W. Chapel Hill St Suite 500, Durham, NC, 27701, USA

    Deborah A. Morris MD

Authors
  1. Deborah A. Morris MD
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  2. Kimberly S. Johnson MD
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Corresponding author

Correspondence to Deborah A. Morris MD.

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Morris, D.A., Johnson, K.S., Ammarell, N. et al. What is Your Understanding of Your Illness? A Communication Tool to Explore Patients’ Perspectives of Living with Advanced Illness. J GEN INTERN MED 27, 1460–1466 (2012). https://doi.org/10.1007/s11606-012-2109-2

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  • DOI: https://doi.org/10.1007/s11606-012-2109-2

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