Relationships with the healthcare agencies that offer medical treatments are vital for intractable disease patients. As they are not only patients, but also members of the community, they have roles their communities and live their lives with an intractable disease, receiving support from their community and partners such as their families. Therefore, it is necessary to create and maintain support systems in the community for these patients and their families.

This paper describes the author’s long-term experiences as a neurologist and the latest research findings of the Health, Labor and Welfare science research. The expectations placed on public health centers and consultation and support centers are also mentioned, as they form the core of support in the community. In addition, chronic diseases in childhood are also described, as they should be covered by the Act on Medical Care and Social Supports for Patients with Intractable/Rare Diseases. Finally, recent trends in training for supporter personnel for intractable disease patients, as well as disaster preparedness for intractable disease patients are presented.

Since the Act on Medical Care and Social Supports for Patients with Intractable/Rare Diseases was enacted in 2015, fair and stable assistance for medical expenses has been established. In addition, adoption of the Act also resulted in the securing of a system for medical care provision, as well as implementation of related research and improvement of the medical treatment environment. The Amendment of the Act has been conducted since 2019, based on supplementary provision 2, which prescribes that amendment of the Act should be carried out within five years from its enaction. Through such amendment, the “submission regarding measures for Intractable Disease Measures and chronic diseases in childhood” was summarized in July 2021. This submission indicates that amendments should focus on the promotion of research and medical treatment, as well as creation of an inclusive society. Based on this submission, subsequent discussions regarding the amendment have been conducted at the Ministry of Health, Labour and Welfare. The smooth enforcement of the amended system is important, through the provision of detailed explanations to related organizations, such as local governments.

In the 50 years of the national intractable disease countermeasure in Japan, many new diseases have been identified due to progress in diagnosis. Although complete treatments are still difficult, improved treatments have been successful in suppressing significant symptoms. Accordingly, new challenges for the national countermeasure have emerged, in terms of supporting the patients' expensive and continuing medical expenses, as well as their participation in society (e.g., as employees) while continuing treatment. The problems and support needs for these patients to balance treatment and work have been clarified through patient surveys. Systems and services are being developed in consultation support services in the health sector and disability employment sector, along with support for balancing treatment and work in the occupational health sector. The support needs of these patients are sometimes complex, involving interrelated issues concerning treatment, life, and employment. It is necessary to properly coordinate systems and services in these sectors, in order to resolve various issues that the patients, employers, and the workplace face throughout the process from work preparation and employment, to job retention, so that related professionals and service providers can effectively share roles and collaborate. Precedence cases for this purpose are described, along with identified challenges.

In recent years, disasters on a catastrophic scale have tended to occur more frequently. In addition to the severely injured, who require advanced emergency medical treatment, individuals who require prompt support from the hyper-acute stage after a disaster include those who are treated at home, such as patients with intractable diseases who wear advanced medical equipment such as ventilators.

The Great East Japan Earthquake, which occurred in 2011, resulted in the largest scale of damage to occur in Japan since the war. Based on the verification of this disaster, the Basic Act on Disaster Control Measures was partially amended (June 2013) to make it compulsory to create a list of persons who require support for evacuation actions (Article 49-10 of the Basic Act on Disaster Control Measures). In addition, many of the victims of the disasters that have occurred frequently thereafter have been among the elderly and the disabled, suggesting the need for further disaster prevention measures for persons with handicaps. In May 2021, the Basic Act on Disaster Control Measures was partially amended to make it mandatory for municipalities to prepare individual evacuation plans for each person requiring evacuation action. In addition, provisions were newly established for the use of personal information, as well as the provision of information on the use of individual evacuation plans to evacuation support personnel and other related parties during normal times and in the event of a disaster, which are necessary for the preparation of individual evacuation plans, in line with the Personal Information Protection Ordinance.

Roughly eight years have passed since it became compulsory to create a list of persons who need support for evacuation, and all municipalities in Japan, including those in the process of creating this list, are engaged in related efforts. However, only about 10% of municipalities have created individual plans, thus far. Furthermore, the percentage of patients with intractable diseases on the list currently stands at roughly 60%.

This paper summarizes the changes in national disaster prevention measures for persons who require consideration during disasters, and the issues in disaster prevention measures for people with intractable diseases at home, from the perspective of maintaining the dignity of persons at home with intractable diseases and their families, and enabling them to live in their communities with peace of mind.

The living environment is the basis of an integrated community care system that supports patients with intractable diseases, and adaptation of the residential environment is an important environmental factor for promoting the daily life and social participation of the patients. Creating an environment that meets the needs of patients with intractable diseases and their families is positioned as one of the important areas of public health activities.

In this paper, we will explain the significance and effects of living environment improvement, various programs related to living environment improvement, specific methods of living environment improvement according to the characteristics of intractable diseases, and how public health workers should support the improvement of living environments.

The establishment of intractable disease support centers began in 2003, and by 2007 these centers were available in all prefectures. The following are stipulated as the important points of an intractable disease support: (1) Promotion of research, (2) Improvement of medical facilities, (3) Reduction of out-of-pocket medical expenses, (4) Enhancement and coordination of local health, medical care, and welfare, and, (5) Promotion of welfare measures aimed at improving QOL.

In this paper, we will outline and present the history of intractable disease support centers in Japan, introduce teaching materials for intractable disease patients and supporters for the human resource development of these centers to achieve uniform quality across the country, and describe the roles of intractable disease support centers. Furthermore, for patients with intractable diseases, such centers help patients eliminate the feeling of isolation, while receiving advice based on experience from senior patients other than medical professionals, and conversely helping junior patients restore their lost confidence and establish new lives. Peer support is important for the reconstructing the lives of patients, and we will report on practical efforts. Finally, we will consider future support for patients with intractable diseases, from the viewpoint of medical sociology.

PHNs are required to connect their intractable disease clients and their families with healthcare, welfare, and other informal resources, in order to ensure that they are not excluded from their communities. In addition, PHNs should enhance the self-care and mutual care of people, by utilizing the social capital in the communities.

Since the enactment of the Act on Medical Care and Social Supports for Patients with Intractable/Rare Diseases in 2014, consultations regarding measures for intractable diseases have been undertaken with the council of intractable diseases in Town A. During consultations with the council, PHNs helped the members discuss two cases in which QOL had been improved: the provision of respite care in hospitals, and the disaster preparedness program. These consultations not only helped to enhance measures for intractable diseases, but also aided in creation of an inclusive society. We should continue our mission, and work to improve the care system for intractable diseases via utilization of the council.

Purpose: The purpose of this report is to describe the evaluation regarding the practice for the community care system for intractable diseases (hereafter, the practice), held by the National Institute of Public Health for public health nurses (PHNs).

Methods: Evaluation of both the lecture and the practice was conducted by trainees before, immediately after, and three months after the practice in 2019.

Results: Out of 64 trainees, a total of 62 (96.8%) participated in the study (prefectural PHNs, 25; municipal PHNs, 37)．The number of participants after 3 months was 43 (69.4%; prefectural PHNs, 17; municipal PHNs, 26), while the number of participants in the interview was 15 (24.2%; prefectural PHNs, 5; municipal PHNs, 10).

Structure Evaluations showed that 53.3% of the participants considered the time of practiceⅠto be short, while 36.7％ answered that the time of practiceⅡwas short. In the Process Evaluation, the participants indicated that the members of groups, time, and cases for practice required improvement. Regarding the Outcome Evaluation, although the Specific Behavioral Objectives were improved immediately after the practice, some had declined three months afterwards. The Outcome Evaluation indicated that 20.7% of the plans that the participants had formed during the practice had scarcely progressed three months later, primarily because they had not given sufficient consideration to each local government’s system for public health nurses. Both an enhancement of prior learning, and the development of an assessment tool for patients and their families will be required in the future. These results were obtained in common, for both prefectural PHNs and municipal PHNs.

Discussion: Prior learning should be enhanced for further improvement of the practice.

Disaster preparedness is an important issue for medical and welfare facilities, such as hospitals, which must continue to engage in medical activities, even in the event of a disaster, and facilities for the elderly, which have many persons who have difficulty evacuating. In Japan, where natural disasters, especially earthquakes occur frequently, the importance of disaster preparedness and business continuity has been pointed out, even before the Great East Japan Earthquake. In addition, various studies have been conducted on both building facilities and management.

This paper provides an overview of the research and studies that have been conducted regarding earthquakes and other natural disasters that occurred before and after the Great East Japan Earthquake, and introduces the issues that have been identified.

In the Great East Japan Earthquake and subsequent disasters, the water supply system was severely damaged. Since water supply is an important lifeline, daily life and socioeconomic activities are greatly affected by cutoff water supply. Based on the experience from the Great East Japan Earthquake and other disasters, guidances related to disaster responses including emergency water supply activities were revised or newly developed. The earthquake-resistant of water supply facilities has been promoted, and measures for important target facilities of water supply such as hospitals have been conducted with priority. From the experience of the water quality accident, the concept of continued water supply with restricted intake was developed. The concept was applied in some disasters since them.

The aim of this report is to present the experiences and disaster preparedness of intractable disease patients and their families, after the Great East Japan Earthquake. Messages from intractable patients and their families are also presented.

First of all, the Chairperson of the Spinocerebellar Degeneration・Multiple System Atrophy Association has described a lack of support for intractable disease patients with respect to evacuation and care at shelters, even in 2018, after the 2011 Great East Japan Earthquake. This indicates a deviation from the law and system regarding disasters. The Secretary-General of the Japan Amyotrophic Lateral Sclerosis Association of Kagoshima reported her heartfelt support for patients with home mechanical ventilation, after the Great Kumamoto Earthquakes. In addition, she mentioned the necessity of an information sharing system in times of disaster, as well as the importance of disaster preparedness. On the other hand, a spinocerebellar degeneration patient described the barrier of disaster preparedness.

Even though a vast range of laws and systems have been implemented, care regarding the provision of food, sanitation, and proper sleeping conditions has been insufficient, and the health conditions of patients has been deteriorating due to overwhelming disasters. As of 2018, the preparedness level of mechanical ventilation batteries and medications has been increasing, compared to 2011. However, a shift toward meeting basic needs such as the provision of food, sanitation, and proper sleeping conditions is required, in addition to preparedness in terms of batteries and medications. Ensuring the safety of support personnel is also necessary to protect intractable patients under disasters. In other words, disaster support for intractable patients means disaster support for us all.

Objectives: In Shiga Prefecture, the third wave of a novel coronavirus infection (COVID-19) caused an imminent tightness of hospital beds. In this study, we constructed a mathematical model of infectious disease to conduct a sensitivity analysis and evaluated the effectiveness of policy interventions and medical systems management to avoid the shortage of hospital beds.

Methods: We extended the SEIQR model in the following two ways. (1) Patients who were quarantined after confirmation of infection were divided into three categories: “hospitalization (severe),” “hospitalization (moderate or mild),” and “accommodation treatment”. (2) The temporal change in infectiousness was introduced as a correction factor from the distribution of the serial interval. Using this model, we conducted the sensitivity analysis to evaluate the influence of three parameters, effective reproduction number, duration of hospitalization, and accommodation treatment rate, on the occupancy rate of hospital beds for COVID-19 patients in the third wave.

Results: The model calculated the number of infected and hospitalized patients with good accuracy in Shiga Prefecture. The accuracy of the effective reproduction number was greatly improved compared to the conventional SEIQR model. In the third wave, the maximum occupancy rate of hospital beds in Shiga Prefecture exceeded 90%, resulting in a very tight situation. Our analyses showed, however, that the tightness of hospital beds could be alleviated to a certain extent by early policy interventions, reducing the length of hospital stay, and increasing the use of accommodation sanatoria. In particular, a reduction in the effective reproduction number, even for 10 days, might have reduced infected patients significantly.

Conclusion: This study has enabled to estimate the effect of measures against COVID-19 spread to alleviate the shortage of hospital quantitatively. Because COVID-19 patients are hospitalized in their respective prefectures, each local government should consider the timing and extent of policy interventions based on the model and precise effective reproduction numbers to avoid medical collapse.

Objectives: This qualitative study explored factors promoting disaster preparedness (DP) in dialysis facilities by investigating facilities with relatively advanced preparedness.

Methods: (1) Choice of advanced facilities: A quantitative survey on DP in dialysis facilities was conducted on all the facilities operated by members of the Japanese Association of Dialysis Physicians. Questionnaires inquired about their accomplishment of five DP targets: Patients, Staff, Equipment/Infrastructure, Cooperation with community organizations　(Cooperation), and General management. Results indicated that DP accomplishment in facilities participating in the survey regarding Patients and Cooperation was lower than for the other targets. We selected 30 facilities in the descending order of accomplishing each target (15 facilities for Patients and 15 facilities for Cooperation) with five facilities being selected for both targets. We finally conducted interviews in 25 facilities. (2) Survey methods: Semi-structured interviews were conducted with the staff in charge of DP. Interview items included methods of advancing DP for each target, DP for the staff (a target of relatively low accomplishment scores), and DP for the entire facility. Twenty facilities (8 facilities for Patients, 8 facilities for Corporation, 4 facilities for Patients and Corporation) participated in the interviews. (3) Analytical method: A qualitative descriptive analysis of verbatim interview records.

Results: Facilities with high DP accomplishment for Patients (1) developed methods showing practical benefits in communicating with patients, (2) disseminated DF information according to patients’ demands, and (3) conducted practical evaluation drills. Facilities with high DF performance by Staff (1) conducted measures from the staff’s perspectives, (2) conducted drills utilizing daily tasks, and (3) conducted education for promoting spontaneity. Facilities with high DF accomplishment for Cooperation (1) developed practical cooperation, (2) established Cooperation with a clear purpose and meaning, and (3) developed face-to-face relationships with the staff of other organizations. DP promotive factors in an organization as a whole included (1) awareness of DP needs, (2) maintaining awareness of DP’s crucial role, and (3) increasing the momentum for DP through experiences of large natural disasters.

Conclusion: It is suggested that developing the spontaneity of patients and staff, incorporating DP into daily tasks, and nurturing key DP personnel in facilities are essential for developing DP in dialysis facilities.

Objectives: Although the nutritional status of children is affected by receiving or not receiving school lunch, the actual state of school lunches among children during the coronavirus disease 2019 (COVID-19) epidemic has not been clarified. Therefore, we conducted a nationwide survey of the status of school lunch provision from April to October 2020 to clarify the actual situation of school lunches during the COVID-19 epidemic.

Methods: In November 2020, we asked 479 elementary and junior high schools across 50 local government areas in Japan about the provision of school lunches on all week days from April 1 to October 31, 2020. The respondents chose from the following answers: “no school lunch,” “regular school lunch,” “simple school lunch,” “unknown,” and “closed school/long vacation.”

Results: There were 205 valid responses (valid response rate: 42.8%). Of the respondents, 80% and 62% of the schools were closed and thus did not provide school lunches in April and May 2020, respectively. Additionally, the provision of a simple school lunch began in late May 2020 and was primarily implemented in areas with high levels of COVID-19 infection. The provision of simple school lunches was not nationwide but limited to long-term implementation (approximately 10–40 days) in 8 of the 50 local government areas.

Conclusion: Nationally, most schools were closed in April and May; accordingly, no school lunches were provided. In addition, the provision of simple meals began in late May and was mainly implemented in areas with high levels of COVID-19 infection. More detailed surveys, such as the evaluation of individual conditions and analysis of menu contents for simple school lunches, are necessary to evaluate the health and nutritional status of children during the COVID-19 pandemic.

Objectives: This study aimed to clarify training (PDCA training) outcome of middle-level public health nurses (PHN) by participants for improving competency for implementing PDCA cycle based on community diagnoses.

Methods: (1) Subjects: PHN who attended PDCA training held in two prefectures (2015-2019). (2) Training content: Quarterly group training with intervals between training in which the students attending the training worked on tasks to give meaning to practice activity by the PDCA cycle. Moreover, they grasped actual situation by home visit, made community diagnosis for three cases for three cases related to the service, and reported its process. (3) Method: We conducted anonymous self-administered questionnaires before and after each training. (4) Survey content: Basic attributes, PDCA practice 30 items, achievement in training and workplace support, influence on the workplace. (5) Analysis procedures: We examined the change of mean value of 5 years for items. For the PDCA practice items, we checked the change of the mean value and growth rate of 5 years.

Results: The average years of experience of the 155 subject PHN were 13.97 and 9.15 years for Prefectures A and B. Significant improvement was obtained for the PDCA practice items consisting of 30 items before and after the training. The growth rate of “I have ever arranged plural cases for the problems I was concerned about the community” was highest for Plan. The highest growth rate was seen in the process “I can explain PHN’s activity to expand from “individual” to “community”” among the 30 items. The achievement score remained the same or tended to decrease until the 3rd training while increased after the last training. The influence of learning in the workplace tended to be greater as they piled pexperience in the training.60% of PHN received supervisors’ support. Their senior PHN provided support to 50% of PHN. Support from their colleagues accounted for 10 to 27%.

Conclusion: The self-evaluation showed certain results were obtained. The improvement of growth rate of arrangement of plural cases is from the effort that they arranged the actual situation of the cases by home visit. For elevation of achievement in training, information was arranged in the process of reporting implementation and evaluation of the service based on the community diagnosis and the PDCA they worked was visualized,which led to their confidence. It has been found that the support from their superiors, senior and co-workers through the training was the place for OJT.

Objectives: The demographic aging of Japan's population entails increased demand for the provision of dental healthcare services in conjunction with medical care and long-term care, and the role of dental hygienists at the community has become increasingly important. However, even as a shortage of dental hygienists is recognized as a problem, the number of young people continues to decrease. Therefore, this study seeks to clarify awareness of the employment market among students studying to become dental hygienists, as well as the number of years that they hope to spend working at their first position immediately after graduation.

Methods: In November 2019, an anonymous, self-administered survey was sent by mail to 162 dental hygienist schools with dental hygiene students enrolled in their final year of study to be completed by final-year students. The questions concerned these students' (1) attributes, (2) positivity about their aspiration to become dental hygienists, (3) desire for a lifelong career as dental hygienists, (4) sense of purpose regarding the work that dental hygienists do, (5) career outlook, (6) experience of receiving a career-oriented education at a training school, (7) intentions with regard to work-life balance, (8) desire to take part in training and intention to acquire certification as a dental hygienist, (9) important considerations that enable long-term employment as a dental hygienist, (10) number of years that they hope to spend working at their first position immediately upon graduation, (11) emphasis when deciding where to work, and (12) anxieties about finding employment immediately after graduation.

Results: Of the 6,270 students from 150 schools that returned questionnaires, 6,264 responses without omissions were selected for analysis. Approximately 90% of students were women in their twenties who had enrolled in the day school training program. The number of years that they hoped to spend working at their first position immediately after graduation was “less than 3 years” (19.5%), “at least 3 years but less than 5 years” (45.1%), or “at least 5 years” (35.5%). Students who expressed a desire to spend more years working had a higher proportion of positive responses to seeking employment. Among respondents, 42.6% described a career outlook, 26.2% had received career-oriented education, and 76.1% expressed the desire to maintain a work-life balance.

Conclusions: Dental hygienist students who hoped to spend more years working at their first position immediately after graduation showed a higher level of awareness with respect to the job market.