Patient perspectives and preferences for communication of medical imaging risks in a cancer care setting.

ABSTRACT

PURPOSE: To identify opportunities for improving patient-centered communication about diagnostic imaging tests that involve the use of radiation in a cancer care setting. MATERIALS AND METHODS: Institutional review board approval and informed consent were obtained for this HIPAA-compliant study. Patient knowledge, information sources, and communication preferences were assessed in six focus groups during 2012. The groups consisted of patients undergoing treatment for metastatic colorectal carcinoma, women treated within the past 6 months for early-stage breast carcinoma, men undergoing surveillance after testicular cancer treatment, parents of patients treated for stage I-III neuroblastoma, patients in a thoracic oncology survivorship program, and participants in a lung cancer screening program. A multidisciplinary research team performed thematic content analysis of focus group transcripts. High-level findings were summarized during consensus conferences. RESULTS: Although they were aware of the long-term risk of cancer from exposure to ionizing radiation, most participants reported that their health care provider did not initiate discussion about benefits and risks of radiation from imaging tests. Most patients obtained information by means of self-directed internet searches. Participants expressed gratitude for tests ("That CT saved my daughter's life," "I'd rather have the radiation dosage than being opened up"), yet they expressed concern about having to initiate discussions ("If you don't ask, nobody is going to tell you anything") and the desire to be offered information concerning the rationale for ordering specific imaging examinations, intervals for follow-up imaging, and testing alternatives. Participants believed that such information should be available routinely and that conversation with their personal physician or endorsed, readily available reference materials were ideal methods for information exchange. Understanding imaging radiation risks and active participation in decision making about imaging were especially important to cancer survivors. CONCLUSION: A substantial gap exists between patient expectations and current practices for providing information about medical imaging tests that involve the use of radiation.