The Role of Physician-Patient Communication in Cancer Clinical Trials Terrance Albrecht, Ph.D. Professor Department of Interdisciplinary Oncology University of South Florida College of Medicine H. Lee Moffitt Cancer Center & Research Institute

Institute of Medicine Report Ensuring Quality Cancer Care (1999) Recommendation #4: “Improve access to high quality clinical trials” “Improve policies to ensure full disclosure of information about appropriate treatment options” Response by NCI: “Begin learning how patients obtain information,identifying their preferences for information and developing communication ‘products’ to help consumers, cancer patients, survivors and families make better informed treatment decisions”

The Problem Clinical trials are the means for finding the best treatments and cures for cancer; however: Insufficient numbers of patients on studies Under-representation of minority and elderly populations Unmet needs of patients, family members/significant others, and physicians Wide variation in physician communication behavior Negative press reports create resistance from eligible patients and families

Funding Preliminary studies supported by the H.Lee Moffitt Cancer Center and Research Institute, #G80502 ( ). Current grant: “Effects of Physician Communication on Patient Accrual,” RO1 CA A3, NCI, 4/01/01 – 3/31/04.

Collaborators 1 John Ruckdeschel, M.D. Dawn Riddle, Ph.D. Michael Coovert, Ph.D. Louis Penner, Ph.D. Gerald Barbosa, M.D. Benjamin Djulbegovic, M.D., Ph.D. James Helm, M.D., Ph.D. Christina Blanchard, MSSW, Ph.D. Gwendolyn Quinn, Ph.D. 1 See selected publications

Reasons Patients Do or Do Not Enroll in Cancer Clinical Trials DO ENROLL: DO NOT ENROLL: Perceive their needs not physician’s priority Disrupt quality of life, functional abilities Anxiety about randomization Worry might not receive best treatment Concern about logistical difficulties Perceive insurance problems Concern about excessive toxicity Poor understanding of study Family against study participation Worry about excessive burden on family/friends Trust in their physician Physician recommended study Physician responsive to questions and issues Encouragement by family Manageable side effects Altruism Desire to live

Current NCI Grant Previously found: Physician communication--style and content-- linked to patients’ treatment decisions choices Disconnect between what we think occurs and what actually occurs in MD-PT encounters Still need to demonstrate impact of communication on patient’s treatment decision making--compared to other determinants—What determines patient choice? Expect the presence of a family member complicates the interaction

Patient Physician Communication Treatment Decision Study Protocol Communication Family Member Model of Patient Decision Making

How to Study the Complex Process of Communication Design/create original digital video recording, editing suite, and analysis system Five criteria for recording system: Capture audio and video Portable/economical Unobtrusive Protect human subjects’ confidentiality Provide concrete evidence of specific behaviors that comprise effective MD-PT communication

Communication for Improving Quality Cancer Care Train physicians to: Invite/elaborate patient/family member questions Check patient/family knowledge--offer culturally and linguistically appropriate explanations Encourage information record Become well versed in types of available services Provide social support and hope

Current and Future Directions Investigations to develop communication strategies for: Increasing quality of life and survivorship— (example: Assisting parents of children undergoing painful procedures) Improving public education about genetic risks Reducing health disparities in cancer care for minority/underserved patients