https://orcid.org/0000-0001-8150-3272
Abstract
Purpose
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.
Abbreviations
PVP, Patients’ and families’ views and preferences; CISC, Cancer Information and Support Centers; JACCC, Japanese Association of Clinical Cancer Centers; DCCH, Designated cancer care hospital; NCC-CIS, Center for Cancer Control and Information Services, National Cancer Center, Japan; Q & A, Questions and answers.
Informed Consent and Ethical Approval
All procedures performed in the study were in accordance with the ethical standards of the institutional and/or national research committee and the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Ethical approval was judged as not necessary by the Medical Ethical Committee of the National Cancer Center (6000-017).
Acknowledgments
The authors would like to thank the medical staff in the 32 hospitals belonging to the Japanese Association of Clinical Cancer Centers and the Cancer Information and Support Centers in designated cancer care hospitals who participated in this study. The authors wish to acknowledge Ms. Otome Watanabe and Dr. Yoshiko Ikeguchi of the NCC-CIS for their useful discussions regarding developing clinical questions. The authors are also grateful to Dr. Takeo Nakayama for his valuable insights on the manuscript. We would like to thank Editage for English language editing.
Disclosure
The authors declare no conflicts of interest.