Original Article

‘The thing is not knowing’: patients' perspectives on surveillance of an indeterminate pulmonary nodule

  1. Renda Soylemez Wiener MD MPH Assistant Professor1,2,*,
  2. Michael K. Gould MD MS Senior Research Scientist3,
  3. Steven Woloshin MD, MS Professor4,5,
  4. Lisa M. Schwartz MD MS Professor4,5,
  5. Jack A. Clark PhD Assistant Professor, Associate Professor2,6

Article first published online: 16 DEC 2012

DOI: 10.1111/hex.12036

Additional Information

How to Cite

Wiener, R. S., Gould, M. K., Woloshin, S., Schwartz, L. M. and Clark, J. A. (2012), ‘The thing is not knowing’: patients' perspectives on surveillance of an indeterminate pulmonary nodule. Health Expectations. doi: 10.1111/hex.12036

Author Information

  1. 1

    The Pulmonary Center, Boston University School of Medicine, Boston, MA, USA

  2. 2

    Center for Health Quality, Outcomes and Economic Research, ENRM VA Hospital, Bedford, MA, USA

  3. 3

    Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA, USA

  4. 4

    Outcomes Group, VA Hospital, White River Junction, VT, USA

  5. 5

    The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth Medical School, Hanover, NH, USA

  6. 6

    Department of Health Policy & Management, Boston University School of Public Health, Boston, MA, USA

* Correspondence
Dr Renda Soylemez Wiener MD MPH
The Pulmonary Center
Boston University School of Medicine
72 E. Concord Street, R-304
Boston
MA 02118
USA
E-mail: rwiener@bu.edu

Publication History

  1. Article first published online: 16 DEC 2012
  2. Manuscript Accepted: 2 NOV 2012

Funded by

  • National Cancer Institute. Grant Number: K07 CA138772
  • Department of Veterans Affairs

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Keywords:

  • anxiety;
  • patient-centred care;
  • qualitative research;
  • solitary pulmonary nodule;
  • uncertainty;
  • watchful waiting

Abstract

Background

The hundreds of thousands of patients found to have a potentially malignant pulmonary nodule each year are faced with tremendous uncertainty regarding what the nodule is and how it should be evaluated.

Objective

To explore patients’ responses to the detection and evaluation of a pulmonary nodule.

Design

Qualitative study based on four focus-group discussions. We performed inductive analysis using principles of grounded theory to identify themes relating to responses to the nodule and strategies to manage uncertainty.

Setting and participants

Twenty-two patients from two medical centres who were undergoing surveillance for an indeterminate pulmonary nodule.

Results

Patient responses to an indeterminate pulmonary nodule were varied and evolved over time. Although almost all patients reported an initial fear about cancer, subsequent depictions of the nodule diverged into four types defined on two dimensions: cognitive (‘it's cancer’ vs. ‘I don't know what it is’ vs. ‘it's nothing serious’) and emotional (anxiety vs. equanimity). Most eventually accepted that the nodule was unlikely to be malignant; however, some remained anxious, convinced the nodule could turn into cancer at any time and should be aggressively monitored for life. Patients used results of surveillance tests as well as their own strategies (e.g. vigilance for symptoms, information-seeking, contemplating and controlling modifiable risk factors, avoidance, faith) to manage uncertainty.

Conclusions

Surveillance for a pulmonary nodule can weigh heavily on some patients for months or years. Our findings may help clinicians prepare patients with a newly detected pulmonary nodule for the burden of the prolonged uncertainty of surveillance.

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