Perceptions of cancer‐related information among cancer survivors: A report from the American Cancer Society's Studies of Cancer Survivors

Abstract

BACKGROUND.Sources of cancer‐related information are rapidly increasing, but little is known about whether the health information available to cancer survivors meets their needs.METHODS.The authors surveyed 778 Massachusetts cancer survivors 3, 6, or 11 years after their diagnosis for 6 common cancers. They analyzed their views about 5 types of cancer‐related information, the quality of that information, barriers to getting it, their experiences with physicians providing cancer care, and the quality of their cancer care.RESULTS.Among 462 (61%) respondents who reported needing cancer information, many gave unfavorable ratings (fair or poor) of the quality of cancer information regarding cancer support groups (38%), long‐term side effects (36%), experiences of other cancer patients (26%), and cancer physicians (26%). About 20% of respondents reported sometimes experiencing barriers to obtaining cancer information, although fewer than 10% usually or always experienced barriers. For both men and women, worse physical and mental functioning was associated with greater need for information, worse ratings of information quality, and more barriers to obtaining information (all P<.01). Cancer survivors who were black or had lower incomes reported more problems obtaining needed information, and younger women had greater information needs than older women (all P <.01).CONCLUSIONS.Opportunities exist to improve the quality, content and delivery of cancer‐related information to survivors, especially for those who are racial/ethnic minorities, have low incomes, or are in worse physical or mental health. Providing information more effectively to cancer survivors may improve their care and health outcomes. Cancer 2008. © 2008 American Cancer Society.

Cancer patients’ informational needs on health promotion and related factors: a multi-institutional, cross-sectional study in Korea

“…Previous research, using the Physical Component Summary Score and Mental Component Summary Score from the SF-36, indicates that CAM use is associated with impaired mental or physical function [26,27]. This result concurs with our results that indicate that a lower EQ5D score (which reflects a low quality of life) is associated with a greater need for health-related information.…”

Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: A study from the population-based PROFILES registry

“…This finding might indicate that information provision has improved with time. However, it could also be ascribed to the diminishing contacts of patients with their gynecologist after the completion of treatment and follow-up [35]. Patients who are still under supervision of a health care provider might have a clearer picture of the information they received.…”

“…Health care providers often have limited time and resources. With growing evidence that wellinformed patients are more satisfied with their care, and do better clinically [35], efforts are needed to improve the information provision to endometrial cancer patients. The current identification of the specific information needs of endometrial cancer survivors and the factors associated with these information needs could facilitate a more patient-tailored approach of informing patients, which may contribute to improved satisfaction and quality of life of endometrial cancer survivors.…”

Unanticipated toxicities from anticancer therapies: Survivors’ perspectives

“…In both groups of patients, however, early sound preparatory information was beneficial in alleviating anxiety. Advance knowledge pertaining to side effects and their management has been shown to decrease anxiety, improve adherence to treatment protocols, and improve quality of life and patient outcomes [17][18][19][20].…”