Treatment and Clinical Trials Decisionmaking: The Impact of the Cancer Information Service. Part 5

Abstract

The Cancer Information Service (CIS) provides accurate, up-to-date information to cancer patients, their families, the general public, and health professionals. In 1996, the CIS telephone service received 208,971 calls from people with questions about cancer treatments and clinical trials (total calls = 500,000). Cancer information specialists are trained and certified to access the PDQ database of treatment options and clinical trials, to translate medical information into understandable terms in order to help callers make treatment decisions, and to discuss clinical trials proactively. A telephone service user survey was conducted to assess the satisfaction and impact of the assistance and information provided to CIS callers. Almost half of the callers (46% of those calling for treatment information, 50% calling for clinical trial information) discussed the CIS information with a physician. Over half (55% treatment, 54% clinical trial) said the information helped them make a treatment decision. Twenty-four percent of treatment and 64% of clinical trial callers had enrolled in or had considered a clinical trial. Almost all (95%) were satisfied with information received from the CIS. The authors find that the CIS is fulfilling its role in disseminating information on cancer treatment and clinical trials through its telephone service. The CIS proactively educates treatment callers about clinical trials. However, the CIS needs to apply other strategies to reach medically underserved populations. Although most callers were able to understand the information, clinical trial callers found the information more difficult than did treatment callers. The CIS is working to simplify written clinical trial information.

Cancer-related information sought by the general public: Evidence from the National Cancer Institute’s Cancer Information Service, 2002–2003

“…Prior research has assessed cancer information seeking. [2][3][4][5][6][7][8][9][10][11][12][13][14][15][16] Furthermore, specific evaluation of the information sought by callers to the CIS has also been pursued 7,[17][18][19][20][21][22][23][24][25] ; however, many of these prior evaluations have examined the information sought by cancer patients 6,17,18,21,23 and their caregivers. 17,19 Growing public interest in cancer information coupled with increases in the amount and complexity of cancer information demands careful, timely, and continual evaluation of public requests for information.…”

Meeting the Public's Cancer Information Needs: Characteristics of Callers to the National Cancer Information Center of the American Cancer Society

“…14,15 CONCLUSIONS Call centers such as the NCIC allow the general public to be involved in their own care, feel empowered in their treatment decisions, and help family/friends alleviate some of the massive amount of worry that goes along with cancer related concerns. 10,16 The fact that the NCIC is staffed by cancer information specialists 24 hours a day makes it both accessible and adds a personal touch. The callers of the NCIC express their appreciation for this service by displaying a very high level of satisfaction.…”

“…5,[9][10][11] An interesting fact to note is that the educational level of the callers increased over time from high school graduates 8 to college graduates or higher. 5,[9][10][11] The callers also differed with regard to the types of information they requested. The majority requested information on treatment, clinical trials, or coping strategies compared to breast cancer pamphlets.…”

The National Cancer Institute's Cancer Information Service: A New Generation of Service and Research to the Nation

“…These papers focused on the more general theme of the CIS as a model system for health communications, including the goals, activities, and methods of the CIS . Seven of the articles reported the results of two CIS surveys conducted in 1996: a survey to evaluate the effectiveness of the partnership program (Fleisher, Kornfeld et al, 1998b;Kornfeld et al, 1998), and a survey to evaluate the impact and value of the CIS telephone service in areas such as treatment decision-making, cancer survivorship, and health behavior change (Ward, Baum, Ter Maat, Thomsen, & Maibach, 1998;Davis, Fleisher, Ter Maat, Muha, & Laepke, 1998;Darrow, Speyer, Marcus, Ter Maat, & Krome, 1998;Maibach, Davis, Ter Maat, Rivera, 1998;Muha, Smith, Baum, Ter Maat, & Ward, 1998).…”