Survivorship and Quality of Life Research
As of January 1, 2016, there were estimated to be more than 15.5 million cancer survivors alive in the US. This number is expected to grow to more than 20 million by 2026 due to both advances in early detection and treatment and the growth and aging of the population. The increasing numbers of cancer survivors living well beyond their initial diagnosis have increased awareness of cancer survivorship, but much remains to be learned about the issues survivors face. We know that the majority of people diagnosed with early-stage cancer can expect their overall health and functioning to return to normal not long after completion of treatment, although some will experience problems that persist over time. Survivors of certain cancer types or those diagnosed at a later stage are more likely to have impaired physical, psychological, or social functioning. In addition to fear of recurrence, survivors are at increased risk for new cancers. Survivors may have difficulty returning to former roles, such as those in the workplace or as parents, or finding health or life insurance. Although research has begun to document the issues faced by cancer survivors, many questions remain. What are the problems of cancer survivors, and how common are these issues? Do they vary by cancer type or stage at diagnosis? How long do problems persist? Do side effects unexpectedly emerge years after treatment, or do they persist from the point of treatment on?
The Survivorship and Quality of Life Research program focuses on promoting optimal physical, emotional, and social health among cancer patients, survivors, and caregivers to achieve the ACS goal of improving their quality of life. A cancer diagnosis often leads to distressing symptoms and informational needs. This program of research investigates the adjustment of cancer survivors and their caregivers who may experience physical, emotional, and social deficits as the result of the disease and its treatment. In addition, this program works with other ACS staff to inform ACS programs designed to provide emotional and informational support for cancer survivors and their loved ones. Studies in this area include:
The Study of Cancer Survivors (SCS) is a national, population-based, longitudinal study of quality of life of more than 5,000 cancer survivors. The study assesses survivors’ health behaviors and physical/emotional functioning as they progress through the survivorship continuum. Selected adults diagnosed with one of 10 common cancers (prostate, female breast, lung, colorectal, bladder, non-Hodgkin lymphoma, skin melanoma, kidney, ovarian, and uterine) are taking part in the study. To date, participants have completed surveys at 1, 2, and 8 years after diagnosis—allowing a comparison of changes over time and an assessment of the long-term impact of cancer. Study findings have added to our understanding of how people adjust to life after cancer and have informed ACS interventions for cancer survivors.
The National Quality of Life Survey for Caregivers is a longitudinal study of the informal caregivers of cancer survivors who are participating in the ACS Study of Cancer Survivors (SCS). This project aims to identify unmet needs among family caregivers at 2, 5, and 8 years after the cancer diagnosis while examining the consequences providing care has on the caregiver’s quality of life. For more information about the ACS Study of Cancer Survivors and National Quality of Life Survey for Caregivers, contact Dr. Corinne Leach at Corinne.Leach@cancer.org
Symptom Surveillance and Disparities Study. The side effects of cancer treatment, such as pain, fatigue or depression, can be as difficult to endure as the disease itself. Many symptoms go under-reported or undertreated, leading to unnecessary suffering and impairments in quality of life, functioning, and treatment adherence. Measuring symptom control is difficult due to a lack of uniform reporting systems at the cancer center and population levels. Such systems would help identify at-risk groups, inform patient interventions and improve the quality of cancer care. The BRC is leading ACS efforts, including the design of studies, to develop scientifically rigorous systems for tracking trends in cancer symptoms and symptom management.
The Survey of Physician Attitudes Regarding the Care of Cancer Survivors (SPARCCS) is a collaboration between the BRC and the National Cancer Institute that assesses the knowledge, attitudes and behaviors of primary care physicians and medical oncologists regarding post-curative care of colorectal and breast cancer survivors. The BRC is developing papers on physician attitudes and practices regarding care for cancer survivors, physician and patient barriers to optimal care of colorectal cancer survivors, and other topics. For more information about the Symptom Surveillance and Disparities Study or SPARCCS, contact Tenbroeck Smith at Tenbroeck.Smith@cancer.org
The Post-Treatment Survivor Transition Study is collaboration between the BRC and the ACS Health Promotions Department that assesses how prepared survivors are for the transition from active treatment back to the community care setting. The study examines the extent to which preparedness for transition is associated with better outcomes, including compliance with screening/surveillance recommendations, health behaviors, fewer emergency room visits, and better management of symptoms and co-morbid conditions. This multi-phase study includes focus groups as well as a large national survey in its effort to identify and prioritize gaps in information and resources for cancer survivors during this transition. For more information about The Post-Treatment Survivor Transition Study, contact Dr. Corinne Leach at Corinne.Leach@cancer.org