Abstract
Background/Aims In 1998, the NCCS released the Cancer Survival Toolbox® (Toolbox), a free, self-learning audio program that can help people develop skills to better meet and understand the challenges of their cancer. The objectives of the current study were to increase the dissemination potential for the Toolbox by learning from individuals who had been diagnosed with cancer about their experiences and preferences related to health information and with the Toolbox specifically.
Methods Newly diagnosed cancer patients (N = 42) from Kaiser Permanente Colorado were sent a copy of the Toolbox. Participants were asked to complete a questionnaire at one and three months, post-receipt of the Toolbox, asking how they used the Toolbox, timing of receiving the Toolbox in relation to their diagnosis, and actual usage. A sub-set of individuals who completed the questionnaire participated in interviews at one and three months to further explore experiences related to receiving, using, and understanding the Toolbox. Usability testing was conducted at three months, comparing usage of the original Toolbox and alternative modalities.
Results Overall, participants felt the Toolbox was a useful and comprehensive resource. Almost half of the study participants thought the Toolbox provided more useful information compared to other health information sources they found. Many specifically stated they liked the personal stories told on the CDs and that hearing about someone else’s experience was very helpful. Participants emphasized wanting to receive the Toolbox at the time of diagnosis. At the three month assessment, participants stated that they found the information in the Toolbox easy to understand and were able to apply the information provided as they reported feeling more comfortable and confident in asking questions and expressing opinions about their care and treatment options.
Conclusions Study participants used numerous sources to find cancer-related information, including the Internet, cancer-related organizations, members of healthcare team, family, and friends. Given that people are different in terms of interests, learning style, and comfort using technology, it is important to have cancer-related health information in a multitude of formats and modalities to meet the patients’ preferences and needs.
