Development of a New Tool for Better Social Recognition of Cancer Information and Support Activities Under the National Cancer Control Policy in Japan.

Under the recent trend of an increasing number of cancer survivors, there is a need to devise measures for visualization of medical care and public health programs related to cancer control, which will enable better overview of the activities at hospitals and local communities and allow various stakeholders to share the information about such activities. The aim of this study was to propose a new tool for proper implementation of cancer information and support programs provided under the national cancer control policy in Japan. Considering 5 elements reported by Handler et al (macro context, mission, structural capacity, processes, and outcomes), we conducted the focus group discussions to confirm the goals of activities of Cancer Information and Support Centers. Eventually, 2 final goals ("reduction in the number of patients/families having difficulties related to cancer" and "being able to live at ease even after diagnosis of cancer") were identified, accompanied by 5 semifinal goals and 16 prerequisite conditions needed to achieve the final goals, as well as the necessary states and the activity indicators corresponding to them. This tool was utilized by 180 (42.7%) of 422 cancer care hospitals designated by the government of Japan (designated cancer care hospitals [DCCHs]) in 2016 and by 336 (77.1%) of 436 DCCHs in 2018, which were the data at 6 months and 3 years after introduction of the tool, respectively. Thus, the tool for evaluating the Cancer Information and Support Centers' activity presented here is expected to stimulate the stakeholders involved in providing supports in various fields of each local community, to share the final goals, to evaluate the status of their achievement, and to further advance their own activities.

Creation and provision of a question and answer resource for esophageal cancer based on medical professionals' reports of patients' and families' views and preferences.

BACKGROUND: In the rapidly-progressing healthcare environment, it is essential to improve treatment quality through continuous clarification of the needs and concerns of esophageal cancer patients and their families. Effective collaboration between information providers and academic associations could help make such clarified information available. METHODS: We analyzed esophageal cancer patients' views and preferences (PVPs) using data that were previously obtained from medical staff in Japan. Based on these PVPs, we created a question and answer (Q&A) resource through collaboration with the Cancer Information Service in Japan (CISJ) and the Japan Esophageal Society (JES). RESULTS: Regarding esophageal cancer, "diet and eating behavior" was the most frequent PVP mentioned by patients and their families, followed by "treatment-related symptoms and adverse effects" and "daily life, recuperation, and survivorship." These PVPs were noted by a wide variety of medical specialties. By analyzing the PVPs, the CISJ developed 11 proposed questions and sent them to the JES, which then created answers based on evidence and clinical-practice-associated consensus. The resultant Q&A resource was uploaded to the CISJ website with mutual linkage to the JES website. CONCLUSIONS: This study showed the usefulness of collecting esophageal-cancer-related PVPs from medical staff and fostering successful collaboration between a cancer-information provider and an academic association. This arrangement may represent a model case for developing a sustainable system that can satisfactorily respond to PVPs regarding other cancers and/or issues.

Use of General Health Examination and Cancer Screening among People with Disability Who Need Support from Others: Analysis of the 2016 Comprehensive Survey of Living Conditions in Japan.

Research on preventive healthcare services among people with disability in Japan is scarce. This study aimed to (1) examine the relationship between disability and the use of general health examination (GHE) and cancer screening (lung, gastric, colorectal, breast and cervical cancer) and (2) explore the reasons for not using GHE. This cross-sectional study used secondary data from individuals aged 20-74 years (n = 15,294) from the Comprehensive Survey of Living Conditions of 2016. Binomial logistic regression analysis was conducted to examine the relationship between disability and non-participation in preventive services. In addition, a descriptive analysis was conducted to explore the reasons for non-participation in GHE. Consequently, disability was identified as an independently associated factor for non-participation in GHE (odds ratios (OR): 1.73; 95% confidence interval (95%CI): 1.14-2.62) and screening for colorectal (OR: 1.78; 95%CI: 1.08-2.94), gastric (OR: 2.27; 95%CI: 1.27-4.05), cervical (OR: 2.12; 95%CI: 1.04-4.32) and breast cancer (OR: 2.22; 95%CI: 1.04-4.72), controlling for confounding factors. The most dominant reason for non-participation was "I can go to see the doctor anytime, if I am worried (25/54, 46.3%)." Our findings imply the existence of disability-based disparity in preventive healthcare service use in Japan.

Healthcare professionals roles in pancreatic cancer care: patient and family views and preferences.

OBJECTIVES: This study explored the information needs and requirements of patients with pancreatic cancer (PPCs) and their families through patients' and families' views and preferences (PVPs) collected by healthcare professionals (HCPs) and to identify differences in PVPs by profession. METHODS: We conducted an anonymous web-based survey of HCPs in cancer care hospitals in Japan, posing specific questions from patients or families regarding pancreatic cancer within the past year. We qualitatively analysed the data and classified them into several categories according to their content. We also compared the percentage of PVPs in each category in the medical profession. RESULTS: We collected 893 PVPs from 353 HCPs and classified them into 15 topics within 5 categories: (1) treatment and care, (2) characteristics of the disease, (3) daily life, (4) feelings of patients or families and (5) communication with HCPs/peer support information. Physicians, nurses and pharmacists received mainly PVPs in categories 1 and 2. Characteristically, cancer counsellors received PVPs in all categories, with higher frequencies for categories 3-5. CONCLUSIONS: PPCs and families have diverse PVPs, and appear to select different HCPs for consultation based on their specific concerns. Each HCP should recognise that their individual experience may be insufficient in understanding the full spectrum of PVPs; however, cancer counsellors tend to have a broader awareness of them. To support PPCs and families, HCPs should appropriately collaborate with each other, considering that HCPs like cancer counsellors who do not provide direct treatment still play an important role in providing holistic support.

Exploring types of conversational agents for resolving cancer patients' questions and concerns: Analysis of 100 telephone consultations on breast cancer.

OBJECTIVE: This study was conducted to investigate the types of conversational agents (CA) that can help address questions and concerns ("lay topics" [LTs]). METHODS: We analyzed audio recordings of telephone consultations with 100 breast cancer patients and their families. (1) We identified the content and mode of expression of LTs about breast cancer raised during actual telephone consultations. (2) We checked for the presence of clue information (CI) that can help patients resolve their LTs. RESULTS: None of the 805 LTs of the 100 callers were the same. Treatment-related questions occurred in 70 of the 100 consultations. CIs were present in 52.5% of the LTs. CONCLUSION: The results suggest that chatbots (a type of CA) that offer CIs are more feasible than chatbots that answer each question directly in cancer consultations. Moreover, it is difficult to answer questions directly because preparing answers to all LTs in a breast cancer consultation is challenging owing to LT differences. Therefore, preparing high-quality CIs focused on treatments is required. PRACTICE IMPLICATIONS: An increasing number of cancer patients are seeking information to resolve their LTs. CAs can help supplement the limited human resources available if they are supplied with appropriate CIs.

Users' evaluation of Japan's cancer information services: process, outcomes, satisfaction and independence.

BACKGROUND: Cancer information service (CIS) programmes are becoming increasingly important because patients need to obtain appropriate information and take an active role in their treatment decisions. Programme evaluation is required to determine the level of satisfaction and quality of experiences of users. The purpose of this study is (1) to identify users' evaluation of CIS programmes by both satisfaction and outcomes that reflect the quality of experience and impact of using the CIS, (2) to examine the related factors of these evaluation outcomes and (3) to analyse the differences of those relations between patients and families. METHOD: The self-reported questionnaire was answered by 447 patients and 216 families of patients who used Cancer Information Support Centres (CISCs) at 16 designated cancer hospitals from January 2016 to April 2016. We developed 12 evaluation items, including satisfaction, experience and the impact of using CISC. RESULTS: Respondents evaluated the CISC highly, especially in terms of overall satisfaction, followed by the counselling process. Immediate access to CISC was the strongest factor affecting outcomes. Patients who wanted to consult about 'disease or symptoms' or 'had no specific problem' tended to provide high scores for some outcomes, but those who wanted to consult about a 'financial problem' or 'discharge or care at home' provided negative scores. These trends were also observed in families but to a more limited extent. CONCLUSION: Users' evaluation of CISCs was sufficiently high in terms of overall satisfaction, showing reasonable scores in outcome levels. Immediate access was the strongest factor affecting outcomes and topics of consultation more directly affected evaluation by patients than by families. The distribution of the scores of the measures and related factors was reasonable. The 12-item measurement tool employed in this study seems to be useful for quality monitoring of the CIS.

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

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.

Employing multiple-attribute utility technology to evaluate publicity activities for cancer information and counseling programs in Japan.

BACKGROUND: Cancer Information and Support Centers (CISCs), which are set up at designated cancer care hospitals (DCCHs) according to the national cancer control programs in Japan, are expected to provide cancer patients and their families with information and counseling, but their public recognition remains low. Therefore, it is necessary to evaluate the publicity activities of CISCs. METHODS: In this study, we evaluated two types of activities for publicizing CISCs conducted inside and outside one of the DCCHs ('Inside Activity' and 'Outside Activity', respectively) by multi-attribute utility technology (MAUT). Seven types of stakeholders, including physicians (n = 5), nurses (n = 4), CISC cancer counselors (n = 5), executives (n = 5), office department staff (n = 5), and licensed social insurance consultants in the hospital (n = 5), as well as patients and citizens (n = 19) were involved in the evaluation. RESULTS: Eight goals of the program for publicizing CISCs were determined. The utility score for each goal was separately calculated for Inside Activity and Outside Activity, and those of the eight goals were summed up to obtain an overall utility score for each activity. Finally, no substantial difference in overall utility score was found between the activity types (Inside Activity = 82.00 vs. Outside Activity = 81.18). CONCLUSIONS: It is implied that omitting or reducing either activity should be avoided in streamlining publicity activities at the CISCs. Despite the limited external validity of the finding, the methodology presented in this study is widely applicable to evaluate other multifaceted programs under an increasingly tight budget in the oncology setting. As the MAUT approach enables us to obtain numerical data for priority settings, it will contribute to rationalized healthcare management, especially in the oncology setting in which objective evaluations of the national cancer-related control programs are lacking and a broad range of stakeholders is involved.

Mental health care and the cultural toolboxes of the present-day Japanese population: Examining suggested patterns of care and their correlates.

An extensive body of literature has documented the under-utilization of mental health services among Asian populations, regardless of where they live. Japan is one Asian country where the mental health care system has improved substantially in the recent decades. Yet, Japan continues to report greater under-utilization of mental health services than other developed countries. One primary reason for this is hypothesized to be the cultural climate, which includes the stock of social, cultural and medical knowledge surrounding mental illness. Previous studies have not examined the cultural toolkit (Swidler, 2001) of the Japanese public, nor have they linked these to public attributions or assessments surrounding mental health. The Stigma in Global Context - Mental Health Study (SGC-MHS), a multi-stage probability sample of Japanese residents aged 18-64 years (N = 994) in 2006 provides data to describe the unprompted care suggestions from the general population regarding case scenarios meeting psychiatric criteria for schizophrenia and depression. Guided theoretically by the Network Episode Model, we analyze if and how respondents socially organize solutions into patterns of culturally acceptable care for mental health problems in Japan. Six cultural utilization patterns appear to be shaped by beliefs about underlying attributions, perceived severity of conditions, and type of mental health problem. Further, women, older individuals and those with differing education levels suggest different care patterns than their counterparts. In sum, the findings indicate unique patterns of mental health care recommendations among the Japanese public, which are culturally and socially constrained.

Cancer information needs according to cancer type: A content analysis of data from Japan's largest cancer information website.

The provision of information about cancer is an important aspect of cancer care. Cancer information provided online is expected to meet the needs of information seekers. Whether information needs vary according to tumor site is largely unknown. We aimed to examine similarities and differences in informational needs by cancer type. Data were collected using a questionnaire administered on Japan's largest cancer information website, "Ganjoho service". A total of 2782 free descriptive responses in the period from April 2012 to December 2017 were analyzed using text-mining software. We identified the top 10 informational need contents, in order of appearance frequency, for eight tumor sites: gastric, colorectal, esophageal, lung, pancreatic, breast, cervical, and prostate cancer. Frequent information needs common to all tumor sites included symptoms, disease stages, treatments, chance of cure, recovery, metastasis, and recurrence. A need for information about diet, pain, side effects of treatments, complementary and alternative medicine was frequent for some tumor sites. Tumor site-specific information should include the following, according to cancer type: information of scirrhous carcinoma for gastric cancer; unusual feces for colorectal cancer; lung X-ray images for lung cancer; early detection for pancreatic cancer; adenocarcinoma, sexual activity, pregnancy, and childbirth for cervical cancer; breast conservation or reconstruction and triple negative cancer for breast cancer; test values and diagnosis and urinary problems for prostate cancer; and hormone therapy for breast and prostate cancer. Cancer information provided online should meet these frequent informational needs, considering similarities and differences of the information required according to tumor site.

Public perceptions toward mental illness in Japan.

AIM: The purpose was to characterize public perceptions in Japan of mental illness and how they related to stigma-related attitudes for the same. METHODS: Data were obtained using a vignette survey conducted as a part of the Stigma in Global Context - Mental Health Study and contained a nationally representative sample (n = 994). The survey was conducted using a multi-mode approach (face-to-face interviews, the drop-off-and-pick-up, postal collection) from September to December 2006, with a multi-stage probability sample of Japanese residents aged 18-64 years. Respondents were randomly assigned one of four vignette conditions that described psychiatric disorders meeting the diagnostic criteria for schizophrenia and major depressive disorder (one vignette for each gender exhibiting each diagnosis). We compared respondents' stigma-related attitudes and perceptions toward mental illness between vignettes. RESULTS: Over 80% of Japanese participants believed that depressive disorder or schizophrenia could be cured via treatment. However, Japanese people still had relatively strong vigilance and denial of competency toward schizophrenia. CONCLUSIONS: Participants expressed the belief that mental illnesses are curable, but stigma toward people with schizophrenia was still relatively strong.