川崎 優子

BACKGROUND AND AIM: Peutz-Jeghers syndrome (PJS) and juvenile polyposis syndrome (JPS) are autosomal dominant diseases associated with high cancer risk. In Japan, knowledge about the prevalence and incidence of PJS and JPS is lacking despite being crucial for providing appropriate medical support. We aimed to determine the prevalence and incidence of these diseases. METHODS: In 2022, a nationwide questionnaire survey was conducted to determine the number of patients with PJS or JPS by sex and the number of newly confirmed cases from 2019 to 2021. The target facilities included gastroenterology, pediatrics, and pediatric surgery departments, which were stratified into seven classes on the basis of the total number of beds. We randomly selected target facilities using different extraction rates in each class, resulting in 1748/2912 facilities (extraction rate: 60%) as the final sample. We calculated the estimated number of patients using the response and extraction rates. RESULTS: A total of 1077 facilities responded to the survey. The estimated numbers of patients with PJS and JPS were 701 (95% confidence interval [CI]: 581-820) and 188 (95% CI: 147-230), respectively. The 3-year period prevalences of PJS and JPS were 0.6/100000 and 0.15/100000, whereas the incidences in 2021 were 0.07/100000 and 0.02/100000, respectively. Male patients constituted 53.5% and 59.6% in the PJS and JPS groups, respectively. CONCLUSIONS: We determined the prevalence and incidence of PJS and JPS in Japan for the first time. Further research is needed to obtain more detailed information, including the clinical differences and outcomes in Japan.

(1) Background: The number of patients with cancer undergoing cancer genome profiling is increasing; however, it remains unclear how accurately they understand the details of the tests and treatments. This study aimed to clarify the awareness of cancer genome profiling tests among patients with cancer who visited cancer genome medical clinics. (2) Methods: A questionnaire survey was conducted on awareness, anxiety, sources of information, and psychological states concerning cancer genome profiling tests. (3) Results: In total, 265 patients with cancer (117 men, 142 women, 6 no response, average age of 58.29 ± 11.9 years) were included in the study, of which 218 (82.3%) were aware of the term "cancer genomic medicine" and 90 (34.0%) were aware of its details. Thus, only a few respondents understood that cancer genome profiling tests facilitate the discovery of secondary findings and of genes associated with hereditary tumors. Regarding their psychological state when visiting the cancer genome clinic, the respondents were anxious about standard treatment and prognosis limits. (4) Conclusions: From the viewpoint of advance care planning, we suggest that medical professionals build a support system that links palliative care and cancer treatment and coordinates genetic counseling at an early stage.

OBJECTIVES: This study was performed to examine the content of decision-making support and patient responses, as documented in the nursing records of individuals with cancer. These patients had received outpatient treatment at hospitals that met government requirements for providing specialized cancer care. METHODS: Nursing records from the electronic medical record system (in the subjective, objective, assessment, and plan [SOAP] format), along with data from interviews, were extracted for patients receiving outpatient care at the Department of Internal Medicine and Palliative Care and the Department of Breast Oncology. Data analysis involved simple tabulation and text mining, utilizing KH Coder version 3.beta.07d. RESULTS: The study included 42 patients from palliative care internal medicine and 60 from breast oncology, with mean ages of 70.5 ± 12.2 and 55.8 ± 12.2 years, respectively. Decisions most frequently regarded palliative care unit admission (25 cases) and genetic testing (24 cases). The assessment category covered keywords including (1) "pain," "treatment," "future," "recuperation," and "home," as terms related to palliative care and internal medicine, as well as (2) "treatment," "relief," and "genetics" as terms related to breast oncology. The plan category incorporated keywords such as (1) "treatment," "relaxation," and "visit" and (2) "explanation," "confirmation," and "conveyance." CONCLUSIONS: Nurses appear crucial in evaluating patients' symptoms and treatment paths during the decision-making support process, helping them make informed choices about future treatments, care settings, and genetic testing. However, when patients cannot make a decision solely based on the information provided, clinicians must address complex psychological concepts such as disease progression and the potential genetic impact on their children. Further detailed observational studies of nurses' responses to patients' psychological reactions are warranted.

BACKGROUND/AIM: Patients diagnosed with cancer are expected to choose one or more treatment modalities after receiving corresponding explanations of the options. When making these choices, patients consider the effects of treatment and aspects related to their quality of life. These concerns can cause confusion and conflict owing to the complicated information provided by medical caregivers. The objective of the study was to identify perceptions of cancer treatment in patients with cancer and the decision-making factors affecting their treatment choices. PATIENTS AND METHODS: In this observational (cross-sectional) study, an online questionnaire survey was administered to 194 Japanese cancer patients with treatment experience. Patient information, perceptions of explanations provided by healthcare professionals, treatment views, and reasons for treatment decisions were subjected to a simple tabulation. Content and factor analysis was conducted to determine important treatment selection elements. RESULTS: Regarding treatment perception, 60.3% of respondents (n=117) considered treatment a financial and family burden, 47.4% (n=92) had concerns about physical pain, and 40.2% (n=78) were worried about increased stress. Regarding decision-making quality, 95.9% determined their preferred treatment within one week, 49.0% reported difficulties in making their decisions, and 83.0% chose their treatment themselves. Major decisive factors were prolonging life, opinions of medical staff, and accepting treatment risks (68.0%, 68.6%, and 60.3% of patients, respectively). The main attitudes toward treatment were anxiety, expectations of benefit, and expectations of support and care. CONCLUSION: SDM should enable patients to visualize the changes that their bodies will experience and include discussions on prognosis. Psychological care should be prioritized to alleviate anxiety and improve readiness for decision-making; attention should be paid to the extent and timing of information provision.

Background: We investigated factors involved in decision-making support provided by physicians, nurses, pharmacists and medical and psychiatric social workers involved in cancer care. Materials & methods: A questionnaire survey on decision-making support was conducted. The level of clinician support was classified as 'supporting patients' 'decision-making process regarding cancer treatment', 'no support for patients' 'decision-making process regarding cancer treatment' or 'team-based support for patients' 'decision-making process regarding cancer treatment'. Results: Physicians estimated that 83.7% of patients made a cancer treatment decision within 1 week, but 45.4% of patients had difficulty making a decision. Conclusion: Medical personnel should support patients who have difficulty making decisions, establish a screening method to identify those needing support and develop a system providing decision-making support through interprofessional work.

BACKGROUND: Peutz-Jeghers syndrome (PJS) is a rare disease characterized by the presence of hamartomatous polyposis throughout the gastrointestinal tract, except for the esophagus, along with characteristic mucocutaneous pigmentation. It is caused by germline pathogenic variants of the STK11 gene, which exhibit an autosomal dominant mode of inheritance. Some patients with PJS develop gastrointestinal lesions in childhood and require continuous medical care until adulthood and sometimes have serious complications that significantly reduce their quality of life. Hamartomatous polyps in the small bowel may cause bleeding, intestinal obstruction, and intussusception. Novel diagnostic and therapeutic endoscopic procedures such as small-bowel capsule endoscopy and balloon-assisted enteroscopy have been developed in recent years. SUMMARY: Under these circumstances, there is growing concern about the management of PJS in Japan, and there are no practice guidelines available. To address this situation, the guideline committee was organized by the Research Group on Rare and Intractable Diseases granted by the Ministry of Health, Labour and Welfare with specialists from multiple academic societies. The present clinical guidelines explain the principles in the diagnosis and management of PJS together with four clinical questions and corresponding recommendations based on a careful review of the evidence and involved incorporating the concept of the Grading of Recommendations Assessment, Development and Evaluation system. KEY MESSAGES: Herein, we present the English version of the clinical practice guidelines of PJS to promote seamless implementation of accurate diagnosis and appropriate management of pediatric, adolescent, and adult patients with PJS.

Hereditary colorectal cancer (HCRC) accounts for < 5% of all colorectal cancer cases. Some of the unique characteristics commonly encountered in HCRC cases include early age of onset, synchronous/metachronous cancer occurrence, and multiple cancers in other organs. These characteristics necessitate different management approaches, including diagnosis, treatment or surveillance, from sporadic colorectal cancer management. There are two representative HCRC, named familial adenomatous polyposis and Lynch syndrome. Other than these two HCRC syndromes, related disorders have also been reported. Several guidelines for hereditary disorders have already been published worldwide. In Japan, the first guideline for HCRC was prepared by the Japanese Society for Cancer of the Colon and Rectum (JSCCR), published in 2012 and revised in 2016. This revised version of the guideline was immediately translated into English and published in 2017. Since then, several new findings and novel disease concepts related to HCRC have been discovered. The currently diagnosed HCRC rate in daily clinical practice is relatively low; however, this is predicted to increase in the era of cancer genomic medicine, with the advancement of cancer multi-gene panel testing or whole genome testing, among others. Under these circumstances, the JSCCR guidelines 2020 for HCRC were prepared by consensus among members of the JSCCR HCRC Guideline Committee, based on a careful review of the evidence retrieved from literature searches, and considering the medical health insurance system and actual clinical practice settings in Japan. Herein, we present the English version of the JSCCR guidelines 2020 for HCRC.

This article elucidates the nursing consultation techniques in shared decision making (SDM) for patients with cancer and their family members. Descriptive data (207 records) from the nurse-led SDM consultation facility and content analysis were used to extract the nursing consultation techniques. In addition, the order in which these techniques were used to structure the SDM process for patients with cancer was identified. The author extracted eight categories pertaining to nurse consultation techniques for the SDM process: sharing feelings, helping to identify the focus of the consultations, helping to devise a personalized recovery plan, providing information in accordance with the patient's responses, supporting the patient to understand the information provided, ensuring continued treatment and care, strengthening the patient support system, and exploring possibilities on the basis of patient needs. The identified logical order in which these techniques were applied may be useful as a guide to systematic decision-making support.

Dramatic advances have been made in cancer treatment in recent years, enabling patients to leave the hospital more quickly and stay home while still undergoing treatment. As a result, the percentage of outpatients has been on the rise. Healthcare providers engaged in actual outpatient treatment, however, spend so much energy implementing daily procedures safely that they have little time remaining to provide patient education or carry out any other systematic patient support programs. Although self-care generally is believed to be what people do to help themselves, differences exist between Western countries and Japan in the interpretation of self-care. In Japan, obtaining necessary support from the family and friends that one relies on also is viewed as essential. Patients' self-care agency must be assessed if nurses are to make the most of patients' abilities; however, evaluation criteria for that purpose have yet to be established. Development of a method for evaluating the self-care agency of patients receiving chemotherapy on an outpatient basis is needed to ensure further advancement in this area of nursing.

With the aim of preparing for disasters, care information packages for the support of patients with cancer and their families during disaster situations were developed in our previous study, and were provided via the internet with a questionnaire asking the face validity and the usefulness of such information. Thirty replies were received. Most subjects thought the care packages were appropriate and useful in the actual settings, however 43.3% of them thought the amount of information was excessive. Many comments and suggestions on the care information packages also could be obtained via the internet.