Abstract B16: Developing an interpersonal framework for lung cancer decision making in African Americans.
Authors: Lee Simon Craddock , Wiebe Deborah J. , Skinner Celette Sugg 
Published: August 2014

Abstract
This study evaluates the applicability of different behavioral constructs to inter-personal healthcare decision-making in African Americans, and applies anthropological methods to explore the patient-caregiver dynamic to elucidate a decision-making framework in lung cancer care. Lung cancer is the leading cause of cancer death in the US; overall mortality rates are estimated at 72% for men and 41% for women. Outcomes are worse for African American patients who are generally diagnosed at younger ages, with more advanced disease and more comorbidities. Medical advances have produced several treatment options, even given low overall survival. As African American patients weigh their options with their families, we need to understand how these conversations affect patient attitudes and influence decisions, including whether to participate in clinical trials. Though several, well-validated scales assess different dimensions of social support and social influence, they fall short of adequately describing the actual dynamic between patients and their family members as they discuss treatment options outside of the doctor's office.
We surveyed African American lung cancer patients treated at a county safety-net hospital ≤ 18 months of diagnosis (N=100) to identify a subsample of patients (N=20) who could name a primary caregiver and indicated willingness to participate in subsequent dyadic, ethnographic interviews over three time points. Measured constructs included social support, social constraint, illness perceptions, lack of acceptance/struggle with illness, coping, and family relationships. We report preliminary findings based on survey accrual to date (~25%). Most patients reported low educational attainment (87%), ever smoking (95%) and identified smoking as the primary cause of their illness (80%). A majority reported having quit smoking (60%), more than half since diagnosis (60%). Two-thirds report having someone to help them with appointments and medical adherence, to visit with and talk about their diagnosis (66%) and indicated interest in participating in the ethnographic interview arm.
In ethnographic interviews with the patient and a family member or other patient-identified caregiver, several themes have emerged, including poor knowledge of disease; anger or frustration about physician communication style; and uncertainty about disease course and patient prognosis. Patient ability to relate their current treatment plan varied by social class, with lower SES patients expressing greater uncertainty and lack of understanding about treatment received and subsequent options. Late-stage patients lack a clear understanding of lung cancer progression, even as it relates to their own prognosis. Patients report clinician reluctance to discuss prognosis: in at least one case, clinicians avoided answering direct questions about current disease stage. Caregivers indicate vigilance and affective support but express this in a language of instrumental support (e.g. meal preparation, patient appetite). Patients and caregivers express distress regarding lack of information, both what they were told and what they understood, particularly related to mortality and family preparation for end of life. Preliminary findings suggest successful inter-personal patient decision making may be adversely influenced physician communication style.
Citation Format: Simon Craddock Lee, Deborah J. Wiebe, Celette Sugg Skinner. Developing an interpersonal framework for lung cancer decision making in African Americans. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr B16.