Renda Soylemez Wiener1, Michael K Gould2, Steven Woloshin3, Lisa M Schwartz3, Jack A Clark4. 1. Pulmonary Center, Boston University School of Medicine, Boston, MA; Center for Health Quality, Outcomes and Economic Research, Edith Nourse Rogers Memorial VA Hospital, Bedford, MA. Electronic address: 02118rwiener@bu.edu. 2. Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA. 3. VA Outcomes Group, Department of Veterans Affairs Medical Center, White River Junction, VT; Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, NH. 4. Center for Health Quality, Outcomes and Economic Research, Edith Nourse Rogers Memorial VA Hospital, Bedford, MA; Department of Health Policy and Management, Boston University School of Public Health, Boston, MA.
Abstract
BACKGROUND: More than 150,000 Americans each year are found to have a pulmonary nodule. Even more will be affected following the publication of the National Lung Screening Trial. Patient-doctor communication about pulmonary nodules can be challenging. Although most nodules are benign, it may take 2 to 3 years to rule out cancer. We sought to characterize patients’ perceptions of communication with their providers about pulmonary nodules. METHODS: We conducted four focus groups at two sites with 22 adults with an indeterminate pulmonary nodule. Transcripts were analyzed using principles of grounded theory. RESULTS: Patients described conversations with 53 different providers about the pulmonary nodule. Almost all patients immediately assumed that they had cancer when first told about the nodule. Some whose providers did not discuss the actual cancer risk or explain the evaluation plan experienced confusion and distress that sometimes lasted for months. Patients were frustrated when their providers did not address their concerns about cancer or potential adverse effects of surveillance (eg, prolonged uncertainty, radiation exposure), which in some cases led to poor adherence to evaluation plans. Patients found it helpful when physicians used lay terms, showed the CT image, and quantified cancer risk. By contrast, patients resented medical jargon and dismissive language. CONCLUSIONS: Patients commonly assume that a pulmonary nodule means cancer. What providers tell (or do not tell) patients about their cancer risk and the evaluation plan can strongly influence patients’ perceptions of the nodule and related distress. We describe simple communication strategies that may help patients to come to terms with an indeterminate pulmonary nodule.
BACKGROUND: More than 150,000 Americans each year are found to have a pulmonary nodule. Even more will be affected following the publication of the National Lung Screening Trial. Patient-doctor communication about pulmonary nodules can be challenging. Although most nodules are benign, it may take 2 to 3 years to rule out cancer. We sought to characterize patients’ perceptions of communication with their providers about pulmonary nodules. METHODS: We conducted four focus groups at two sites with 22 adults with an indeterminate pulmonary nodule. Transcripts were analyzed using principles of grounded theory. RESULTS:Patients described conversations with 53 different providers about the pulmonary nodule. Almost all patients immediately assumed that they had cancer when first told about the nodule. Some whose providers did not discuss the actual cancer risk or explain the evaluation plan experienced confusion and distress that sometimes lasted for months. Patients were frustrated when their providers did not address their concerns about cancer or potential adverse effects of surveillance (eg, prolonged uncertainty, radiation exposure), which in some cases led to poor adherence to evaluation plans. Patients found it helpful when physicians used lay terms, showed the CT image, and quantified cancer risk. By contrast, patients resented medical jargon and dismissive language. CONCLUSIONS:Patients commonly assume that a pulmonary nodule means cancer. What providers tell (or do not tell) patients about their cancer risk and the evaluation plan can strongly influence patients’ perceptions of the nodule and related distress. We describe simple communication strategies that may help patients to come to terms with an indeterminate pulmonary nodule.
Authors: Andrew J Winzelberg; Catherine Classen; Georg W Alpers; Heidi Roberts; Cheryl Koopman; Robert E Adams; Heidemarie Ernst; Parvati Dev; C Barr Taylor Journal: Cancer Date: 2003-03-01 Impact factor: 6.860
Authors: Christopher G Slatore; Nanda Horeweg; James R Jett; David E Midthun; Charles A Powell; Renda Soylemez Wiener; Juan P Wisnivesky; Michael K Gould Journal: Am J Respir Crit Care Med Date: 2015-08-15 Impact factor: 21.405
Authors: Renda Soylemez Wiener; Michael K Gould; Steven Woloshin; Lisa M Schwartz; Jack A Clark Journal: Health Expect Date: 2012-12-16 Impact factor: 3.377
Authors: Marc R Freiman; Jack A Clark; Christopher G Slatore; Michael K Gould; Steven Woloshin; Lisa M Schwartz; Renda Soylemez Wiener Journal: J Thorac Oncol Date: 2016-03-07 Impact factor: 15.609
Authors: Jonathan M Iaccarino; James Simmons; Michael K Gould; Christopher G Slatore; Steven Woloshin; Lisa M Schwartz; Renda Soylemez Wiener Journal: Ann Am Thorac Soc Date: 2017-06
Authors: Renda Soylemez Wiener; Jack A Clark; Elisa Koppelman; Rendelle Bolton; Gemmae M Fix; Christopher G Slatore; Hasmeena Kathuria Journal: Chest Date: 2020-05-07 Impact factor: 9.410
Authors: Kristina Crothers; Erin K Kross; Lisa M Reisch; Shahida Shahrir; Christopher Slatore; Steven B Zeliadt; Matthew Triplette; Rafael Meza; Joann G Elmore Journal: Ann Am Thorac Soc Date: 2016-11