New Approach for Collecting Cancer Patients’ Views and Preferences Through Medical Staff

Tomoko Takayama,1 Yoji Inoue,1 Rie Yokota,2 Masayo Hayakawa,1 Chikako Yamaki,1 Yasushi Toh3 1Cancer Information Service Division, Center for Cancer Control and Information Services, National Cancer Center, Tokyo, Japan; 2Department of Health Communication, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan; 3National Hospital Organization, Kyushu Cancer Center, Fukuoka, JapanCorrespondence: Tomoko TakayamaCancer Information Service Division, Center for Cancer Control and Information Services, National Cancer Center, 5-1-1, Tsukiji, Chuo-Ku, Tokyo, 104-0045, JapanTel +81-3-3542-2511 Ex. 1621Fax +81-3-3547-8577Email totakaya@ncc.go.jpPurpose: It is crucial for health professionals to understand patients’ and families’ views and preferences (PVPs) to enhance their adherence to treatments and subsequent satisfaction. Regularly and consistently collecting comprehensive information on the needs and concerns of patients/families and utilizing the information is vital for improving clinical practice and the healthcare environment. As an initial approach, this study aimed to develop a new system for appropriately collecting PVPs regarding cancer from nationwide medical staff and consider the potential utilization of PVPs in clinical practice.Methods: Web-based anonymous surveys were conducted with medical staff in nationwide cancer care hospitals in Japan. The surveys queried the questions, values, desires, and experiences expressed by cancer patients or their families on five topics, namely two cancer sites (colorectal and esophageal cancers) and three symptoms and signs (lymphedema, urinary symptoms, and tingling/numbness/pain) within the past year. The PVPs were compared to the five topics and staff medical specialties, and those on tingling/numbness/pain were analyzed qualitatively.Results: Among the 904 medical staff who responded to this survey, the PVPs encountered by the staff differed according to the topic and staff medical specialty. Tingling/numbness/pain was the most frequently encountered symptom, and urinary symptoms were the least encountered. Only half or fewer of the medical staff had information available regarding urinary symptoms and tingling/numbness/pain. Further, qualitative content analysis of the expressed PVPs regarding tingling/numbness/pain raised clinical questions on this topic that led to the construction of a “Questions & Answers” section on a public website in Japan.Conclusion: This study suggests that collecting PVPs through nationwide cancer-related medical staff might be an efficient way to understand the specific requirements of patients/families. It would also be possible to document PVP trends according to changes in the environments of patients/families by nationwide, consistent, and continuous PVP collection.Keywords: patient’s needs, cancer information, health communication, quality of health care, trends in patients’ preferences