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The purpose of this study is to learn more about what breast cancer survivors age 65 and older know about the physical and functional impairments related to their breast cancer and its treatment. It will also help the research team understand what can be done to help people recover from breast cancer. This study is seeking 50 breast cancer survivors and 50 healthcare providers for a one-time, one-hour phone interview.
Breast cancer (BC) and its treatment can leave physical and functional impairments (impairments) long after initial diagnosis – serving as constant reminders of the cancer experience and eroding functional ability and confidence in one’s body and health.1 Currently, most breast cancer survivors (BCS) receive cancer care in community hospital and outpatient settings.The standard of care (SOC) to prepare newly-diagnosed BCS for surgery is to deliver pre-operative nursing education and testing that focuses on: (1) care for the surgical site and monitoring of surgical drains; (2) review post-operative movement precautions; and (3) laboratory and radiological testing to rule out infection and lung or heart disorders that could interfere with the surgical procedure and/or post-operative recovery trajectory. Despite this SOC, post-surgical impairments still exist and BCS are unprepared for impairments after BC surgery such as pain, fatigue, muscle weakness, loss of range of motion, altered skin sensation, integrity, and lymphedema1,2,4-8 that left untreated, can become disabling. 9-11
BCS constitute 22% of the 15.5 million U.S. cancer survivors.1 In 2007, 4.1 million cancer survivors were reported to be living with cancer-related side effects and impairments.2 Currently 62% of all cancer survivors are over the age of 65 years old and this is expected to grow to 73% as the survivor population is expected to exceed 26 million by 2040.3 Comorbidity burden is currently highest in the oldest survivors (those ≥85 years)3.Further,the cost of cancer care is expected to rise by 39% and reach $173 billion by 2020, exactly when the cancer survivor population is expected to exceed 18 million.13 The combination of persistent impairments, aging, comorbidity and the burden of health care-related debt place BCS at a high and costly risk for erosion of function, disability and with ever growing needs for early detection and prevention of impairments, particularly for the oldest age cohorts of cancer survivors. Despite high levels of impairment, education on early identification and self-management of impairments is notably absent from breast cancer pre-surgical usual care.
Our pilot results show that: (1) BCS report an average of 2.5 BC -related impairments (e.g., shoulder movement impairment, muscle weakness, pain, fatigue, abnormal skin sensation and posture) persisting for nearly 12 years);14 (2) > 80% report the need for pre-surgical self-management education on impairments and movement after surgery15; (3) BCS have significantly reduced shoulder range of motion prior to surgery – even after controlling for shoulder problems, medical history, and type of cancer surgical procedures16; (4) cancer survivors undergoing palliative cancer care have low receptivity to rehabilitation despite high levels of disabilty.17 This current application will help fill an important gap in cancer care by specifically identifying the level of breast cancer patients’ and oncology specialists’ knowledge about impairments that includes early detection, self-management and receptivity to rehabilitation referral to address breast cancer related impairments.
Our central hypothesis is that not only the presence of impairments but understanding the causes, effects, and referral for rehabilitation to care for such impairments is important for both patients and their providers to make fully informed breast cancer treatment planning and recovery decisions. Therefore, our specific aims are: Aim 1: Identify knowledge gaps for breast cancer survivors on about knowledge, early detection and self-management of breast cancer-related impairments; Aim 2: Assess knowledge of BC-related impairment detection and