“An individual doesn’t get cancer, a family does.” -- Terry Tempest Williams
Approximately 17 million Americans with a history of cancer are alive today. Three out of four families have at least one member who is a cancer survivor. We know that a cancer diagnosis affects the entire family. Clearly, large numbers of Americans have been affected by a cancer diagnosis personally or in the family, yet only recently have studies begun to examine the impact of cancer on the family. We need to understand more about the effects of cancer on diverse aspects of the quality of life of family members, particularly after treatment is completed.
In 2002, the Behavioral Research Center initiated the largest quality of life study of caregivers of cancer survivors to date: the American Cancer Society National Quality of Life Survey for Caregivers. This study is providing information needed to develop better support services for family caregivers and cancer survivors: we are learning who the caregivers are, how they cope with the stress related to the cancer in the family, and what factors improve or impair their quality of life. This national study helps us describe what it is like to be a family caregiver of a person with cancer, and provides needed information to researchers, policymakers, and those designing programs to help the families and other caregivers of those diagnosed with cancer.
This project includes three surveys mailed to the same group of caregivers over a period of time. The first survey, mailed out between 2002 and 2005, was completed by 1,635 caregivers. The findings from this survey have provided us with a clearer picture of what caregivers experience about 2½ years after the person they are caring for is diagnosed with cancer. The second survey, mailed out beginning in 2005, was completed by 1,219 caregivers and focused on the caregivers’ daily experiences about 5 years after the cancer diagnosis. We learned that approximately 10% of the caregivers were actively providing care to the cancer survivor 5 years after the initial cancer diagnosis, and about 10% had lost their family member to cancer. The third survey, mailed out beginning in 2008, assesses caregivers’ healthy lifestyle behaviors and long-term quality of life approximately 8 years after their relative’s cancer diagnosis. So far, the third survey has been completed by 947 caregivers.
Here are some examples of what we have learned from these surveys:
Quality-of-life issues among persons touched by cancer are not fully understood, and evidence-based interventions are needed.
Quality of life has become an important outcome in assessing the impact of the diagnosis and treatment of cancer. Despite the ever-increasing number of persons affected by cancer, relatively little is known about their long-term needs or the factors that contribute to good quality of life. Much of the research that has investigated the quality of life of persons affected by cancer has been conducted with people in active treatment or those not long past the completion of treatment. Little is known about the needs, concerns, and psychosocial functioning of individuals throughout the full continuum of cancer experience, from diagnosis and treatment to long-term survivorship or end of life.
Furthermore, additional research is needed to identify and develop the types of interventions that will have a positive impact on the quality of life of this population. Thus, the aims of the Behavioral Research Center Program of Quality of Life Research are to: (1) gain a better understanding of the psychosocial and quality-of-life issues among persons affected by cancer and (2) develop evidence-based interventions to address these issues.
In order to achieve these aims, a three-phase research plan has been developed. The first phase of this plan focused on the planning and implementation of the Study of Cancer Survivors-II (SCS-II), a nationwide, cross-sectional study of the quality of life of short-, medium-, and long-term cancer survivors. As with SCS-I, this study was designed to overcome the limitations of other studies that have explored the quality of life of cancer survivors. Because SCS-II has a cross-sectional design, with information from three separate groups of survivors who are either 2, 5, or 10 years past diagnosis, SCS-II is providing us now with much-needed information about long-term survivors.
The second phase of the research plan involves an in-depth analysis of the SCS-II data to enhance our understanding of the behavioral, psychosocial, and support factors that influence the quality of life of long-term cancer survivors in the United States. Using information from the study analyzed in Phase 2, the third phase of this research program will develop, implement, and evaluate evidence-based interventions for people affected by cancer. The informational and supportive services of the American Cancer Society offer a rich and, thus far, largely untapped setting in which to test psychosocial and behavioral interventions with cancer patients and their loved ones on a national scale. In order to take advantage of this opportunity, this research will utilize the existing infrastructure of the Society to deliver interventions that are organizationally focused. This knowledge can also be used to guide in the development of effective psycho-educational informational materials and programs.
Finally, study results can help in the Society’s efforts to formulate 2015 challenge goals for the nation in the area of quality of life of cancer survivors. Thus, the Behavioral Research Center’s program of Quality of Life Research plans to use information gathered through descriptive research to develop psychosocial interventions that are consistent with the overall mission and leadership roles of the American Cancer Society.