Abstract
Background/Aims Effective communication during cancer care is critical for good health outcomes. Understanding what information patients look for and from whom is necessary to ensure their information needs are met. This study examined health information seeking behavior of KPCO members diagnosed with cancer and explored how ethnicity, race, age, cancer type, gender, and educational level are related to choices of health information content, sources, and format.
Methods A retrospective cohort of KPCO members who were diagnosed with cancer from 1 January to 31 December 2010 and able to speak and understand English and/or Spanish were identified. Members were sent a cover letter, postage-paid return envelope, and a questionnaire asking about cancer type, sources used for cancer-related health information after diagnosis, preferences about various ways of receiving cancer-related health information, and demographics. Two weeks after the original mailing, a reminder postcard was sent to non-respondents.
Results Twelve hundred sixty-four questionnaires were mailed; 48 were returned due to invalid addresses; 19 were ineligible and 608 were returned completed. Fifty-five percent of respondents were female; approximately 9% identified as being Hispanic, the overwhelming majority was White. The mean age was 60.7 (SD=12.8). Eighty percent of all respondents preferred to receive health information via printed materials followed by electronic formats such as the internet and email. Differences were observed when results were stratified by age. Individuals 60 or younger preferred to find cancer related health information via the internet; whereas individuals over 60 speaking with a doctor or member of their healthcare team was preferred. When looking for information related to their cancer diagnosis, the majority (83.0%) sought disease specific information. Approximately 88% reported they were able to find the information they needed. Those who were unable to find all the information they needed stated they wanted more information on treatment options, side effects of treatment, possibility of recurrence, support groups/blogs, chances of developing other types of cancer, available clinical trials, assistance with co-pays, and nutrition advice.
Discussion The results of this study highlight the importance for having cancer related health information in a multitude of formats to meet the patients’ preferences and needs.
