Background: Information needs and understanding of hospitalized cancer patients have remained unexplored.
Aim: The objective of this study was to assess the awareness of cancer patients regarding their disease and to evaluate their understanding of disease and information seeking behavior.
Methods: We enrolled 232 adult cancer patients for the study to collect data using semi structured interview regarding their awareness and understanding of illness.
Results: A majority of patients (87.8%) reported awareness of their diagnosis. Female patients, patients from urban areas, educated patients and those with longer duration of illness had significantly better knowledge of their disease as compared to the rest of the study group (p<0.05). Presence of metastatic disease did not significantly alter the patients’ understanding of disease or their information seeking behavior. Age was found to significantly influence the understanding of current disease status and request for more information regarding disease. Most of the patients (82.2%) wanted their family to know about their diagnosis while a few (4.8%) wished their friends to have knowledge about their illness. There was limited use of active information seeking strategy by patients (from medical books, internet, help lines etc) with more reliance on passive information seeking strategies (friends, other patients, newspaper, TV etc) which may have lead to the misconceptions patients had about their illness. Although the patients were more satisfied with care than the information they had received, awareness was not related to satisfaction (p>0.05). Most of the patients (71.0%) were not satisfied with the quantity and quality of the information they had received from their health care provider.
Conclusions: Our findings suggest that although cancer patients want and need to have adequate information regarding their disease, the amount and quality of information they receive is not optimal leading to adoption of passive information seeking strategy causing misconceptions about disease.