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Original Research

Development of Japanese Versions of the Control Preferences Scale and Information Needs Questionnaire: Role of Decision-Making and Information Needs for Japanese Breast Cancer Patients

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Pages 1017-1026 | Published online: 18 May 2021
 

Abstract

Purpose

The importance of shared decision-making (SDM) between physicians and patients is increasingly recognized. In Japan, patients have shown more willingness to participate in treatment if medical professionals provide sufficient information; however, relationships between physicians and patients have traditionally been asymmetric, with patients accepting information from physicians without discussion. To explore the benefits of SDM in cancer treatment, including confidence in treatment decisions, satisfaction with treatment, and trust in healthcare providers, this study developed Japanese versions of the Control Preference Scale (CPS) and Information Needs Questionnaire (INQ).

Patients and Methods

Reliability and validity of the CPS and INQ were tested with 49 breast cancer patients.

Results

The CPS showed good test–retest reliability (kappa coefficient: 0.61, weighted kappa coefficient: 0.61, Kendall’s tau coefficient: 0.61) and acceptable criterion validity. The INQ showed adequate consistency; the mean number of circular triads and coefficient of consistency were 3 (range 0–19) and 0.9 (range 0.37–1), respectively. Using the CPS and INQ to identify patients’ roles in decision-making and information needs, results further suggested that breast cancer patients in Japan want to participate in SDM. Medical issues, including disease spread and cure, were found to be of high interest, while social and psychological issues, including sexual attractiveness, genetic risk, and family impact, tended to be low.

Conclusion

The Japanese CPS and INQ can be used to assess patients’ needs to improve care. Further, as patients’ information needs change along the care trajectory, these tools should be used throughout treatment.

Abbreviations

CI, Confidence Interval; CPS, Control Preference Scale; INQ, Information Needs Questionnaire; PLNS, Patient Learning Needs Scale; SD, Standard Deviation; SDM, Shared Decision-making; TINQ-BC, Toronto Information Needs Questionnaire-Breast Cancer.

Data Sharing Statement

Not applicable.

Ethics Approval and Informed Consent

This study was conducted in accordance with the Japanese Ethical Guidelines for Epidemiological Research and the World Medical Association’s Declaration of Helsinki. The Japanese Ethical Guidelines for Epidemiological Research were revised in 2014. The case collection for this study was conducted prior to revision and is based on old ethical guidelines. Written informed consent was obtained from all patients. The protocol was approved by the institutional review board of Tokyo Medical University and Nagumo clinic. This study is registered at UMIN-CTR, number UMIN000011272.

Consent for Publication

Not applicable.

Acknowledgments

We acknowledge and thank our collaborators for their thoughtful contribution to the conduct of this study (Thomas F Hack, Tomoyo Yamanaka, Eric M Skier, Tadaharu Matsunaga, Megumi Umeda, Hiroshi Kaise, Takashi Ishikawa, Hideaki Ayuhara, and Takao Akashi).

Author Contributions

All authors made substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; took part in drafting the article or revising it critically for important intellectual content; agreed to submit to the current journal; gave final approval of the version to be published; and agree to be accountable for all aspects of the work.

Disclosure

The authors declare that there are no competing interests.

Additional information

Funding

There is no funding to report.