Abstract

Abstract Background With the recent advances in genomic medicine, the unmet needs of cancer patients (unmet needs) may be changing. A large-scale unmet needs survey was launched in 2021 with the aim of understanding the latest unmet needs and sharing information with healthcare professionals and patients, thereby contributing to the improvement of cancer treatment in Japan. The Rare Cancer Patients' Network (RCJ) is conducting this survey in collaboration with the National Cancer Centre and the National Federation of Cancer Patients' Associations (Zenganren). This presentation will report on progress since the JSNO2021 publication. Methods A total of 38 questions were asked in six categories: (1) detection and diagnosis; (2) treatment; (3) genomic medicine (access to genetic mutation testing); (4) clinical trials; (5) necessary information, medical care and support systems; and (6) quality of life. A combination of free-text and multiple-choice questions were asked on these, with approval obtained from the Ethics Review Committee of the National Cancer Centre at the end of October 2021 to conduct the survey online via the RCJ and the All Cancer Federation network (response deadline: 08/2022). Results The survey is scheduled to complete response collection and final analysis in August 2022. The results of the interim analysis will be presented at the poster session. Conclusions Depending on the final response collection, it may be possible to make comparisons between cancer types and identify specific patient needs in individual cancer types, such as brain tumours. At JSNO2022, we will present the results of each of the 38 questions and discuss the unmet needs of brain tumour patients with healthcare professionals, hoping that results and discussions will improve healthcare with a focus on brain tumour patients.

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