Studying Communication over the Cancer Care Continuum: A Feasibility Study

Effective communication is a cornerstone of patient-centered cancer care. Unfortunately, many cancer patients report serious breakdowns in cancer communication, sometimes with devastating effects. These breakdowns occur with a variety of providers across the care continuum. Preventing breakdowns and mitigating their harmful effects requires an understanding of their antecedents and consequences. Most studies of cancer communication rely on retrospective patient reports, which are subject to multiple sources of error and confounding. Less frequently, studies have included actual recordings, usually focused on a single provider on a single occasion focus, and longitudinal tracking of important outcomes has been missing. Thus, substantial gaps in our understanding of cancer communication remain. Our goal is to conduct a multi-site study involving prospective, longitudinal recording of provider-patient interactions throughout the cancer care continuum. By studying encounters in real time, over time and over many providers, we will better understand these interactions and their impact on patient outcomes. This study will address questions such as: How often do communication breakdowns occur? What risk factors exist? Can subsequent encounters repair the harm caused by poor communication? To successfully conduct such a study, we must understand the practical, technical, ethical, and regulatory challenges involved in proposing, recruiting and implementing such a study. The objective of this pilot study is to conduct in-depth interviews with patients, providers, IRB heads, and leaders at four CRN sites to identify potential barriers and enablers of longitudinal audio-recording of encounters, and ways to enhance acceptability of the planned research all stakeholders. We will also recruit cancer patients to keep communication diaries, making note of all cancer care encounters (telephone, in-person and email) and their appraisal of each encounter’s impact. Findings will inform a future R01 proposal, one that is responsive to NCI’s interest in patient-centered cancer communication across the cancer care continuum. It will also enhance the CRN’s capacity for cancer communication research.

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