P55.03 Results of The First Survey Using EORTC QLQ INFO25 on Information Acquisition and Satisfaction of Lung Cancer Patients in Japan

Abstract

The Japanese Lung Cancer Society published its Lung Cancer Guidebook for Patients (the "Guidebook") in November 2019. Although the provision of information related to diagnosis and treatment by society is considered necessary for patients, no previous reports have scientifically examined the guidebook's usefulness. Although there is a lot of medical information provided by professionals for patients, we thought it was essential from an academic perspective to evaluate whether patients are delighted with this information in a quantified form. Since quantified data would help future revisions of the guidebook, we conducted the first questionnaire survey on satisfaction with medical information in Japan. We conducted a web-based questionnaire to clarify the guidebook's role in obtaining information for lung cancer patients using the EORTC QLQ-INFO 25, an international evaluation method. We calculated EORTC QLQ C30 and INFO25 scores to analyze the satisfaction level with the information patients received about their disease. Readers and non-readers of the guidebook were stratified in the analysis. Patients were asked to participate in this survey through patient associations and the Lung Cancer Society. Of 332 patients (110 males and 222 females), 284 (86%) completed the questionnaire. One hundred seventy patients participated in the patient group, and 96 (29%) used the guidebook. The most common age group among the questionnaire respondents was 55-59 years old, which is considered a relatively young population among Japan's lung cancer patients. We asked the source of medical information. The most significant number of patients received notification from the Internet, followed by their doctor, and then from patient groups. The EORTC QLQ C30 scores for readers and non-readers were not statistically different, indicating no bias in the patient background regarding the quality of life between the two groups. This survey results suggested that patients who belonged to patient groups were inclined to get more information about things other than treatment. The OVERHELP score, a measure of satisfaction with medical information, was calculated and compared. We found no statistically significant difference in OVERHELP scores between the two groups of readers and non-readers. Patients who used both the Patient's Association and the Guidebook tended to rate the information as applicable (p=0.04) than those who did not use either the Patient's Association or the Guidebook. While the guidebook we published this time was in paper form, the questionnaire survey was conducted via the Internet. Therefore, a relatively large number of respondents obtained medical information from the Internet. To verify the paper-based guidebook's usefulness, we should include the patients who were not familiar with the Internet in the future. This study is the first survey using scientific methods to evaluate information provision and patient satisfaction with an academic society-led initiative. The results show that the use of patient associations and guidebooks helps obtain information and provides a basis for discussing information provision to patients with lung cancer in the future.