SPECIAL SESSION: Exposing Quality of Life and Deadly Health Disparities: Using Research to Change Health Care Policy

Description/Overview: At this meeting in Hong Kong, Dr. Carol Ferrans will be inducted into the International Nurse Researcher Hall of Fame of Sigma Theta Tau International. The purpose of this presentation is to trace her research trajectory from its earliest beginnings in quality of life and health disparities, over 30 years, including how she used research findings as a tool to strategically to shape and create changes in healthcare policy and legislation. Since the early 1980s when quality of life was a new concept, she has been an advocate for the voice of the patient in QOL assessment, developing a conceptual framework for QOL and instrument to capture the patient’s viewpoint. The Ferrans and Powers Quality of Life Index (QLI) was introduced in 1985 and since then has been translated into 21 languages and used in 30+ countries, in every continent except Antarctica. To date, 48 published studies provide support for the instrument’s reliability and validity, and 27 intervention studies have demonstrated its sensitivity in detecting change in QOL. More than 250 studies using the QLI have been published to date by nurses, physicians, psychologists, physical therapists, and other health care professionals. It is one of the most popular instruments for cardiac rehabilitation and pulmonary rehabilitation programs across the USA. Dr. Ferrans’ program of research also has focused on understanding and reducing disparities in cancer. In 1987 Dr. Ferrans conducted one of the earliest comparisons of QOL of African American and white breast cancer survivors, and reported various psychological sequelae of surgery, including significant depression persisting years after treatment. Building on this work, Dr. Ferrans conducted a study with 16 participating institutions across the country, examining the barriers to participation in cancer screening, long-term effects of cancer, and QOL of African American survivors of breast, colon, and prostate cancer. In her next study, Dr. Ferrans examined the factors contributing to late-stage diagnosis of breast cancer in economically disadvantaged African American and Hispanic women. She found that delay in seeking diagnosis of a suspicious breast symptom was twice that previously reported in the literature, and that cultural beliefs and fear were major contributing factors. Next, she developed an instrument that correctly identified cultural beliefs contributing to later stage of breast cancer at diagnosis for African American and Hispanic women. Her team’s published findings were cited by the American Cancer Society in their 2011 guidelines for breast cancer screening. Dr. Ferrans then developed a short film on DVD to address these beliefs, which was endorsed by the American Cancer Society. Evaluation of the DVD demonstrated that cultural beliefs could be changed in a single viewing. Dr. Ferrans currently has reached more than 8,500 women with the DVD. Her research and advocacy work culminated in the creation of the Illinois Reducing Breast Cancer Disparities Act, designed to improve access to screening and the quality of mammography throughout Illinois. This work provides a model for the effective dissemination of research findings to create wide-ranging changes in health care and policy.