The American Cancer Society has taken a leadership role in research, planning, and program development related to improving the lives of cancer survivors. In setting its challenge goals for the year 2015, the American Cancer Society not only recognized the importance of reducing cancer incidence and mortality, but also of improving the quality of life of cancer survivors. In response to the challenge goals, the Behavioral Research Center has implemented a major research program to assess the quality of life of cancer survivors: The Study of Cancer Survivors.

This research program includes two major research studies, each of which serve a different but equally important purpose. These studies will each contribute to the scientific literature on the survivorship experience. The data gathered will be used to set and monitor the American Cancer Society’s 2015 goals to improve cancer survivors’ quality of life, as well as to develop services and programs for survivors and their families.

The Study of Cancer Survivors-I (SCS-I)

The Study of Cancer Survivors (SCS-I) is a prospective, nationwide, longitudinal study of adult cancer survivors designed to determine the unmet psychosocial needs of survivors and their significant others, to identify factors that affect their quality of life, to evaluate programs intended to meet their needs, and to examine late effects, including second cancers. Selected adults who have been diagnosed with one of 10 common cancers (prostate, female breast, lung, colorectal, bladder, non-Hodgkin’s lymphoma, skin melanoma, kidney, ovarian, and uterine) are invited to take part in the study. These cancer survivors are identified and selected through state cancer registry databases. Participating survivors complete questionnaires four times: at 1, 2, 5, and 10 years after diagnosis, which allows a comparison of changes over time and an assessment of the long-term impact of cancer on survivors.

Another particular design strength is the inclusion of survivors of so many cancer types, compared to other studies that more typically examine the experiences of survivors of a single cancer type. This design allows the psychosocial effects of multiple cancer types to be compared. SCS-I also has the advantage of being designed to include a sufficient number of understudied groups, including ethnic minorities, survivors from rural areas, and younger survivors, allowing assessments of the unique needs of these medically underserved groups.

The specific aims of SCS-I are:

1. To describe the quality of life (QOL) of cancer survivors at 1, 2, 5, and 10 years from diagnosis and illustrate trends in changes of QOL over that period.
2. To describe the unmet needs of cancer survivors at 1, 2, 5, and 10 years from diagnosis and illustrate trends in changes of needs over that period.
3. To describe the health behaviors of cancer survivors at 1, 2, 5, and 10 years from diagnosis and illustrate trends in changes of these behaviors over that period.
4. To identify the factors that are related to good quality of life of cancer survivors.

The Study of Cancer Survivors-II (SCS-II)

The Study of Cancer Survivors-II (SCS-II) is a national cross-sectional study of 2-, 5-, and 10-year cancer survivors that focuses on quality of life and psychosocial functioning. Selected survivors of breast, prostate, colorectal, urinary bladder, skin melanoma, and uterine cancer from across the nation will be invited to participate in this study. Cancer survivors are identified and sampled through state cancer registry databases. The study complements SCS-I in that it allow researchers to identify issues to be followed longitudinally in SCS-I while providing needed data on longer-term cancer survivors now.

The specific aims of SCS-II are:

1. To describe the unmet needs of cancer survivors, with a particular focus on their psychosocial adjustment and quality of life.
2. To identify factors that determine good quality of life and successful survivorship.
3. To assess the effectiveness of various ACS programs utilized by cancer survivors.
4. To compare levels of functioning and quality of life among 2-, 5-, and 10-year cancer survivors as well as among survivors of the six cancer types included.
5. To examine state-level issues faced by cancer survivors.

Family Caregiver Studies

The American Cancer Society has taken a leadership role in research, planning, and program development related to improve the quality of life of family members and friends of cancer survivors. The Challenge Goals set for the year 2015 include not only to improve the quality of life of cancer survivors, but also to improve the quality of life of their family members and caregivers. In response to the goals, the Behavioral Research Center has developed a family caregivers research program with the following aims:

1. To identify the prevalence and variability of family caregivers of cancer survivors.
2. To determine the efficacy of the family’s involvement in different dimensions of care tasks. To examine the impact of family caregiving on the quality of life, that is, psychological and physical well-being, of survivors and their family caregivers.
3. To investigate these issues among across age and ethnic groups and at a range of stages in cancer survivorship.

The family caregivers research program includes two major studies:

National Quality of Life Survey: Caregivers

As part of the Study of Cancer Survivors-I, a longitudinal study of family/friend caregivers of cancer survivors is being conducted. This project specifically aims a) to identify unmet needs among family caregivers at 2 and 5 years after the cancer diagnosis and b) to examine the impact of family care on the quality of life and health behaviors (e.g., exercise and healthy diet) of survivors and family caregivers at 5 years after diagnosis.

Study of Informal Cancer Care: Longitudinal Assessments

This project, developed in response to the five research goals described above, focuses on newly diagnosed cancer survivors and their family members.

Specifically, this project

1. Examines the long-term impact of cancer diagnosis and treatments on the quality of life of both survivors and their family members,
2. Makes systematic comparisons of the effect of receiving or providing informal cancer care on the quality of life quality of life of survivors and their family members, across different ethnic populations.

This project has two study phases: the feasibility test phase (Feasibility Study) and the hypotheses test phase (Main Study). The purpose of the Feasibility Study is to validate the study procedures with patients who are newly diagnosed (within a month of diagnosis) with cervical, colorectal, lung, or prostate cancer, and their informal caregivers (i.e., family members and close friends). The purpose of the Main Study is to achieve the research aims listed above.

Findings from this program of research will provide rich information for developing tailored comprehensive interventions to benefit the families of cancer survivors.