Cancer survivorship care: challenges and opportunities in Japan.

This article discusses the current international scope and practices of cancer survivorship care and the challenges and opportunities of survivorship care in Japan. Cancer is a common illness in Japan; however, the national cancer control plan focuses only on limited survivorship-related issues, and there is no official national-level survivorship care strategy that addresses the diverse unmet needs of survivors. There is an urgent need to discuss and implement measures for quality survivorship care delivery under the current healthcare system in Japan. The Development of Survivorship Care Coordination Model Research Group, 2022, organized under the National Cancer Center Japan research grant from 2019 to 2022, identified four tasks that are required to realize quality survivorship care: (i) providing education opportunities for survivorship care stakeholders to raise awareness about the concept and the necessity of cancer survivorship care, (ii) providing training opportunities and cancer survivorship care certification for community healthcare providers, (iii) enforcing the economic basis of survivorship care and (iv) creating simpler systems that are organically linked with existing care systems. Collaboration among multiple players is indispensable to developing the philosophy of survivorship care and efficient care delivery. For this purpose, we need a platform where diverse players can participate equally towards the same goal: cancer survivors' optimal wellness.

Screening practices of cancer survivors and individuals whose family or friends had a cancer diagnoses-a nationally representative cross-sectional survey in Japan (INFORM Study 2020).

PURPOSE: We examined cancer screening practices and related beliefs in cancer survivors and individuals with family or close friends with a cancer diagnosis compared to individuals without the above cancer history for 5 population-based (gastric, colorectal, lung, breast, cervical) and 1 opportunistic (prostate) cancer screenings using nationally representative cross-sectional survey in Japan. METHODS: We analyzed 3269 data from 3605 respondents (response rate, 37.1%) and compared the screening beliefs and practices of cancer survivors (n = 391), individuals with family members (n = 1674), and close friends with a cancer diagnosis (n = 685) to those without any cancer history (n = 519). RESULTS: Being a cancer survivor was associated with screening for gastric (OR, 1.75; 95% CI, 1.04-2.95), colorectal (OR, 1.56; 95% CI, 1.03-2.36), and lung cancer (OR, 1.71; 95% CI, 1.10-2.66) but not breast, cervical cancer or PSA test. Having a family cancer diagnosis was associated with colorectal and lung cancer screening. Having friends with a cancer diagnosis was associated with PSA test. Cancer survivors and family members perceived themselves as being more susceptible and worried about getting cancer than individuals without any cancer history. Cancer survivors strongly believed screening can detect cancer and were more likely to undergo screening. Subgroup analysis indicated an interrelation between gastric and colorectal cancer screening among survivors. CONCLUSIONS: A cancer diagnosis in oneself or family or friend influences an individual's health-related belief and risk perception, which can increase the likelihood of cancer screening. IMPLICATIONS FOR CANCER SURVIVORS: Targeted and tailored communication strategies can increase awareness of cancer screening.

The maternal employment status after the completion of their child's cancer treatment: A cross-sectional exploratory study.

AIM: To clarify the details of mothers' employment status after the completion of their child's cancer treatment. DESIGN: A cross-sectional exploratory study. METHODS: Data are collected from 62 mothers of childhood cancer survivors using self-report questionnaires. Fisher's exact test was used to determine the statistical significance of factors between the mothers who worked and those who did not work after their child's cancer treatment had been completed. RESULTS: Thirty-two mothers worked after the completion of their child's cancer treatment. There were significant differences in age, education level, employment status at the diagnosis and time elapsed since the diagnosis between the working mothers and non-working mothers. Twenty-two non-working mothers reported that they had some motivation to work, but the most common reason for not working was "To nurse or care for the child with cancer". Some mothers also stated that they did not work due to anxiety about cancer recurrence.

Incidence and predictors of recurrent sick leave in survivors who returned to work after allogeneic hematopoietic cell transplantation.

BACKGROUND: Although rather favorable probabilities of return to work have been reported after allogeneic hematopoietic cell transplantation (allo-HCT), survivors often have difficulty continuing to work because of their immunocompromised status and diverse late effects after allo-HCT. We evaluated the incidence of and risk factors for recurrent sick leave in allo-HCT survivors after they initially returned to work. METHODS: We targeted allo-HCT survivors who were employed at diagnosis, aged 20-64 at survey, and survived for ≥ 2 years without relapse. Of the 1904 survivors who were informed of the study, 1148 returned the questionnaire (60%), and 1048 eligible participants were included in the overall analysis. In the present study that considered recurrent sick leave after return to work, we targeted 896 participants who returned to work at least once after allo-HCT. Participants stated if they had recurrent sick leave after returning to work and its reasons, as well as associated patient-, HCT/HCT center-, and work-related factors and clinical events after allo-HCT. A logistic regression analysis was conducted to explore correlated factors for recurrent sick leave. RESULTS: In survivors who returned to work, 30% required recurrent sick leave. The most frequent causes of recurrent leave were physical issues (72%), and analysis of free descriptions demonstrated that these were mainly associated with graft-versus-host disease, infection, or readmission. Other reasons included work-related issues such as gap between physical and working conditions. Multivariate analysis showed that cord blood transplantation, longer employment duration, and counseling from healthcare professionals were associated with a lower risk of recurrent leave. Readmission, immunosuppressant use, and symptoms involving the respiratory system, gut, and joints and muscles were associated with a higher risk. CONCLUSIONS: Our results drawn from a large cohort study should help healthcare professionals identify and assist at-risk patients. Multi-professional teams that provide continuous support and effective communication with the workplace are necessary to improve long-term outcomes after allo-HCT. IMPLICATIONS FOR CANCER SURVIVORS: In order to continue working after the initial return to work, it is important to receive counseling from healthcare professionals and obtain reasonable accommodation from workplace.

Resignation and return to work in patients receiving allogeneic hematopoietic cell transplantation close up.

PURPOSE: To characterize the issues regarding work and employment specific to allogeneic hematopoietic cell transplantation (allo-HCT) survivors, we conducted a nationwide cross-sectional questionnaire survey. METHODS: We targeted allo-HCT survivors employed at diagnosis, aged 20-64 at survey, and survived ≥2 years without relapse. The questionnaire included the timing of and reasons for resignation (termination of employment contract), and patient-related, HCT-related, work-related, and HCT center-related factors. RESULTS: A total of 1048 eligible participants were included in the analysis (response rate, 60%). The median time after allo-HCT was 5 years (range, 2-30) at the time of survey. After diagnosis, 41% of participants resigned from work throughout the course of treatment. The most frequent timing of the first resignation was "after discharge post-HCT" (46%), followed by "from diagnosis to initial treatment" (27%). Factors significantly associated with resignation included female gender, older age, and part-time employment. Favorable factors included the presence of occupational health staff at the workplace, employment of ≥10 years, and self-employed/freelance. After resignation, the overall incidence of return to work with some accommodations was 76% at 5 years after HCT, but it was 52% without any accommodation. CONCLUSIONS: Overall, the rate of resignation was 41%, and the most frequent timing of resignation was after discharge post-HCT, accounting for approximately half of the resignations (46%). Workplace accommodations increased the rate of return to work from 52% to 76%. IMPLICATIONS FOR CANCER SURVIVORS: Early detection of employment-related concerns and support throughout the treatment process are necessary for patients receiving allo-HCT.

COVID-19 Patient Returned to Work after Long Hospitalization and Follow-up: A Case Report.

BACKGROUND: Coronavirus disease 2019 (COVID-19) causes severe respiratory dysfunction and post-intensive care syndrome (PICS), which can significantly affect the return to work after discharge from the hospital. This report describes the first case of a patient with severe COVID-19 at our institution during the first wave of the COVID-19 pandemic (February to June 2020) who returned to work following rehabilitation management. CASE: A 48-year-old female nurse was admitted with COVID-19 and underwent mechanical ventilation (MV). Respiratory and anti-gravity training was conducted as physical therapy; however, the patient developed PICS, muscle weakness, delirium, and psychological problems. After the withdrawal of MV, muscle strengthening activities, activities of daily living (ADL) training, family visits, and occupational and speech therapy were started. On day 60 post-admission, the patient was able to perform ADL independently and was discharged; however, she continued to experience shortness of breath during exertion. Post-discharge, follow-up assessments for symptoms, respiratory function, and exercise capacity were continued. On day 130, she returned to work as a nurse. DISCUSSION: The PICS noted during hospitalization in this patient improved, but at discharge, the patient had difficulty completing the practical tasks involved in a nurse's workload. Follow-up assessments of symptoms, respiratory function, and exercise capacity after discharge helped to determine whether the patient could return to work.

Cross-cultural validation of the Cancer Stigma Scale in the general Japanese population.

BACKGROUND: The stigma associated with cancer has negative impacts on cancer patients as well as the general public, who have a potential risk of cancer. To the best of our knowledge, a validated measure to assess cancer stigma among the general Japanese population does not exist. METHOD: We translated the Cancer Stigma Scale (CASS) - a 25-item self-administered scale to evaluate stigma related to cancer - into Japanese and examined its psychometric properties. The Japanese version of CASS (J-CASS) was validated among a sample of the general Japanese population through an online survey to validate its test-retest reliability, internal consistency, and concurrent validity. RESULTS: A total of 319 responses were included in the analysis. An exploratory factor analysis eliminated two original items but showed a six-factor model (Awkwardness, Severity, Avoidance, Policy Opposition, Personal Responsibility, and Financial Discrimination), which was similar to the original scale. Cronbach's alpha for each factor was satisfactory, ranging from 0.81 to 0.91. The internal correlation coefficients were above 0.70, except for Policy Opposition. The total and subtotal scores of each factor of the J-CASS were significantly associated with respondents' age, gender, familiarity with cancer patients, and social desirability, demonstrating the scales' good concurrent validity. A substantial proportion of the participants selected "unsure" for some items of the scale, suggesting a further need for refining the scale. SIGNIFICANCE OF RESULTS: This study demonstrated that J-CASS is a reliable and valid measure for evaluating misconceptions and stigma toward cancer in the general Japanese population.

Impact of gender and employment type on job loss among cancer survivors.

OBJECTIVE: To identify factors associated with cancer-related job loss following cancer diagnosis. METHODS: A multicentre cross-sectional survey was conducted among adult cancer survivors employed at the time of cancer diagnosis. Hierarchical multivariate logistic regression was used to examine the association of gender and employment type with job loss after cancer diagnosis and if the interaction between gender and employment type predicted job loss. RESULTS: Of 1618 patients recruited, 1483 returned questionnaires (91.7% response rate). Data from 708 patients were eligible for analyses. Approximately 21% of patients had lost their job within 10 years of diagnosis. Patients who had undergone chemotherapy were more likely to lose their jobs than those who had not (OR = 3.24, 95% CI 2.13-4.91). Women were more likely to lose their jobs than men (OR = 2.58, 95% CI 1.48-4.50). Temporary employees were more likely to lose their jobs than regular employees (OR = 2.62, 95% CI 1.72-3.99). After controlling for demographic and clinical characteristics, no interaction effects between gender and employment type were observed (P = 0.44). CONCLUSIONS: Women and temporary employees are more vulnerable to cancer-related job loss. Clinicians need greater awareness of the risk of patient job loss, and they need to assess patients' employment types and provide appropriate support to balance treatment schedules and work.

Effects of a structured group intervention on obesity among breast cancer survivors.

BACKGROUND: Obesity is associated with an increased risk for developing breast cancer and poor cancer-related outcomes. Endocrine therapy is a key part of treatment for breast cancer, but can result in weight gain. This study examined the efficacy of a structured group intervention during adjuvant endocrine therapy for obese patients with breast cancer. The intervention involved a combination of proper nutrition, exercise, and group coaching. METHODS: Participants were patients with breast cancer who were undergoing adjuvant endocrine therapy and exhibited apparent weight gain while undergoing therapy, or had a diagnosis of abnormal lipid metabolism. We conducted a single-arm prospective study with a combined intervention. The intervention comprised 15 min of nutrition education, a 30-min group health coaching program, and three 45-min group aerobic exercise sessions. We evaluated participants' parameters (e.g., body weight, body mass index [BMI], cholesterol, psychological distress) at baseline, and at 1, 3, and 6 months after the intervention. RESULTS: At 1 month after the intervention, there were significant reductions in body weight (p < 0.01), BMI (p < 0.01), triglyceride levels (p < 0.05), total cholesterol levels (p < 0.01), psychological distress (p < 0.05), and cancer-related fatigue (p < 0.01). At 3 and 6 months after the intervention, we observed further reductions in body weight, BMI, and triceps skinfold thickness. CONCLUSION: Our study showed that a short-term structured intervention helped modify dietary and exercise behaviors and promote health among breast cancer survivors, and resulted in favorable changes in participants' body weight.

Developing the structure of Japan's cancer survivorship guidelines using an expert panel and modified Delphi method.

PURPOSE: To develop consensus-based components used in the first evidence-based cancer survivorship guidelines in Japan. METHODS: Purposive sampling was used to recruit a panel of experts in oncology clinical practice, nursing, health science, epidemiology, and patient advocacy. The panel engaged in a modified Delphi process to (1) generate consensus related to the definition of survivorship, (2) determine the aim and target users of the guideline, and (3) identify clinical issues for inclusion. A Web-based survey and panel meeting were conducted to obtain the panelists' feedback on the initial draft proposed by the secretariat. Multiple online votes were then completed until all elements of the proposed guidelines reached an approval rate of 80% or higher. Following each round, iterative refinements were made based on all panelists' feedback. RESULTS: Twenty-two experts were enrolled in the panel and participated in four rounds of online voting and two face-to-face meetings. Ultimately, the panel reached consensus on the definition of survivorship, the aim of the guidelines, and target users. Moreover, 11 of the original 17 clinical issues were retained. Finally, the panel selected two priority areas to implement immediately. CONCLUSION: The panel's consensus on the definition of survivorship, aim and target users of the guideline, and 11 clinical issues will serve as a compass for the development of comprehensive cancer survivorship guidelines in Japan. IMPLICATIONS FOR CANCER SURVIVORS: A culturally sensitive consensus approach was developed to improve the long term health and well- being of cancer survivors in Japan.

[Current Status and Challenges of Work-Related Issues among Cancer Patients].

The 5-year relative survival rate of cancer patients in Japan has reached 62.1% owing to advances in cancer treatments. Half of the people are diagnosed with cancer at some point in their lifetime, and one-third of cancer patients belong to the working-age generation between the ages of 20 and 65. In Japan, various governmental policies have been developed in a short period of time with the aim of balancing cancer treatment and employment. The Basic Plan to Promote Cancer Control Programs in Japan, enacted in 2017, specifies the need to prevent cancer patients from leaving employment and to support re-employment, as well as the need for further collaboration among medical institutions, occupations, and local communities. However, Japanese people's perceptions regarding employment of cancer patients is still negative. Employment support for cancer patients is regarded as an important topic in cancer survivorship, and various findings have been accumulated in Japan and other countries. The impact of onset of cancer on the employment of patients is influenced not only by medical factors but also by other factors such as individual factors, health status, psychosocial factors, willingness to work, and workplacerelated factors. Hence, the situations of individuals differ greatly. It is necessary to examine the current state of research and support based on these factors. Points to keep in mind when providing support to balance both cancer and employment include: 1 ) there are many persons related to working cancer patients who are involved and 2 ) it is difficult for physicians to understand the full picture of a patient's job based on the labor contract. Appropriate information sharing; environmental improvement; and mutual cooperation in medical treatment sites, workplaces, and local communities are essential.

[Perceptions toward Employment and Support Needs in Medical Institutions and Workplace among AYA Cancer Survivors].

We conducted a cross-sectional questionnaire study to explore perceptions of employment, job-related help-seeking behaviors at the time of cancer diagnosis, illness disclosure at the workplace, and support needs for continuous employment among adolescent and young adult cancer survivors. The mean age at the time of cancer diagnosis was 27.8(range, 15-37) years. For survivors in this age category, employment is the foundation for economic development and contributions to society. Approximately half of the participants sought job-related help from medical staff and employment experts. Approximately 90%of the participants disclosed their illness to their workplace, and most were given consideration for their situation. To ensure continuous employment, the participants required environmental improvement at the workplace rather than consultation services at hospitals. This study suggests the need to further investigate when and where certain support is required and to consider ways to improve support at both hospitals and workplaces.

Knowledge, fatigue, and cognitive factors as predictors of lymphoedema risk-reduction behaviours in women with cancer.

OBJECTIVE: To identify social-cognitive factors predicting lymphoedema risk-reduction behaviours (hereafter, self-care) after discharge among patients in Japan with breast or gynaecological cancers, using the extended model of the theory of planned behaviour. METHODS: A cross-sectional questionnaire study was conducted in an oncology hospital. Items measured were (1) knowledge about self-care; (2) the Cancer Fatigue Scale; (3) social-cognitive factors in the theory of planned behaviour (attitudes, subjective norms, and perceived behavioural control); (4) self-care (limb hygiene, observation, articular movement, recommended risk-reduction behaviours in daily life, and diet and weight control); and (5) demographics. Of 202 respondents, 147 who had not been diagnosed with lymphoedema were eligible for statistical analysis (65.3% with gynaecological cancer, 34.7% with breast cancer). RESULTS: Structural equation modelling was used to examine a hypothesised model based on the theory of planned behaviour. The results revealed that a longer time since surgery, higher levels of fatigue, less knowledge, higher expected efficacy of self-care, and lower perceived behavioural control directly and significantly predicted less self-care behaviour. CONCLUSIONS: Besides education about self-care behaviour, levels of fatigue and perceived behavioural control should be taken into account to encourage female patients with cancer to perform self-care after discharge. Continuous psycho-educational programmes after discharge may help to facilitate self-care behaviours among long-term female cancer survivors.

Information-seeking, information sources and ongoing support needs after discharge to prevent cancer-related lymphoedema.

OBJECTIVES: To compare gynaecological and breast cancer patients in their information-seeking behaviours, usefulness of information sources and ongoing care needs after discharge to prevent the onset of lymphoedema. METHODS: We conducted a consecutive cross-sectional survey in an oncology hospital. Adult patients with stage I, II or III gynaecological or breast cancer who had undergone lymph node dissection and had not been diagnosed with lymphoedema were eligible for inclusion. The survey explored physical health status, knowledge of self-care, information-seeking behaviours, information sources and need for ongoing care from an oncology hospital and/or community health centre. RESULTS: Among 254 patients recruited, 202 responded (79.5% response rate). In total, 147 patients were eligible for statistical analysis. Irrespective of cancer type, the most commonly sought information was lymph drainage. Information on preventing weight gain was sought more often by breast cancer patients than gynaecological cancer patients. Regardless of cancer type, the most common information sources were nurses at an oncology hospital. Gynaecological cancer patients perceived nurses at the oncology hospital as useful for understanding risks, symptoms and prevention of lymphoedema. Irrespective of cancer type, ongoing need for help with lymphoedema prevention was reported both from the oncology hospital and the community centre. Limb symptoms, poor health status and poor knowledge affected the ongoing needs of gynaecological cancer patients at the oncology hospital, whereas poor health status affected ongoing needs in community health centres among both types of cancer patients. CONCLUSIONS: Both gynaecological and breast cancer patients reported ongoing care needs, but that details of information-seeking behaviours differed.

Community-based lymphedema risk reduction programs for cancer survivors: An Internet survey of public health nurses.

AIM: Currently, there is no provision for continuous care to monitor lymphedema risk-reduction behavior for survivors of cancer. The aim was to explore the possibility of community-based lymphedema education programs by investigating the knowledge, training needs, and intention to organize such programs and barriers among government-employed public health nurses. METHODS: A cross-sectional Internet survey was conducted among government-employed public health nurses in Japan. The participants were recruited from 2841 health center and community health centers. RESULTS: The final sample included 641 government-employed public health nurses. The participants' knowledge about lymphedema risk-reduction strategies was relatively good, especially on the importance of observation, detection of early signs, and referral to lymphedema clinics. A small proportion of participants indicated an intention to organize community-based lymphedema education programs. Three determinants for this intention were identified: a general interest in lymphedema education, past experience of undertaking training in lymphedema risk-reduction strategies, and the perceived difficulty in organizing community-based lymphedema education programs. The participants' perceptions of difficulty included not knowing the needs for lymphedema education in their community with survivors of cancer. CONCLUSIONS: The results suggest that working collaboratively with government-employed public health nurses to organize community-based lymphedema education programs is possible. Achieving this requires further investigation of the needs of survivors of cancer in the community, communicating these needs to governmental agencies, and organizing and delivering comprehensive training programs about lymphedema risk-reduction strategies for government-employed public health nurses.

Job resignation after cancer diagnosis among working survivors in Japan: timing, reasons and change of information needs over time.

OBJECTIVE: Despite advances in work-related policies for cancer survivors, support systems for working survivors in healthcare settings in Japan remain underdeveloped. We aimed to reveal (i) the present situation of cancer survivors' job resignation, the timing of resignation, and reasons for resignation; (ii) healthcare providers' screening behaviors of cancer survivors' work-related difficulties and (iii) changes to cancer survivors' information/support needs over time since diagnosis. METHODS: We conducted an anonymous, cross-sectional survey using a convenience sample of re-visiting outpatients at three cancer centers in Japan in 2015. The questionnaire covered participants' demographic and clinical characteristics, change to job status, timing of and reasons for job resignation, screening experience regarding work-related difficulties by healthcare providers, and information/support needs at four distinct timings (at diagnosis, between diagnosis and initial treatment, between initial treatment and return-to-work, and after return-to-work). The results of 950 participants were eligible for statistical analysis. RESULTS: Only 23.5% of participants were screened about work-related issues by healthcare providers despite 21.3% participants reporting resigning at least once. Among participants who resigned, 40.2% decided to do so before initial treatment began. Regarding reasons for resignation, self-regulating and pessimistic reasons were ranked highly. Respondents' work-related information and support needs were observed to change over time. While treatment-related information (schedule and cost) was ranked highly at diagnosis, the need for more individually tailored information and support on work increased after treatment began. CONCLUSIONS: This study provides important basic data for developing effective support systems for working survivors of cancer in hospital settings.

Distress from changes in physical appearance and support through information provision in male cancer patients.

OBJECTIVE: This study aims to reveal the present situation of changes in physical appearance induced by treatment, the effects of these changes on social activities, and support from medical staff in male cancer patients. METHODS: A questionnaire survey was administered to 949 male patients (response rate: 90.1%) visiting the National Cancer Center Hospital in Tokyo over 3 days in January 2015. RESULTS: The final respondents were 823 patients (mean age: 65.3, standard deviation (SD) = 12.32). Fifty-two percent of the sample, and 79.4% of patients aged under 65 were employed. A total of 84.9% experienced changes in physical appearance, and the highest mean scores of psychological were observed for stoma (3.1) and skin eczema (2.9). A total of 66.4% reported no difference in daily life even after their physical appearance changed. However, patients younger than 65 years old who were employed experienced high social difficulties (12.5%). Many wanted to stop going to work and experienced severe distress in their social lives; 74.1% reported it is important to have the same physical appearance at work as before treatment. The majority of patients obtained information from doctors (35.2%) and consulted with their wife or partner (66.2%) regarding their appearance changes, and 5.7% did not have anyone to consult with. CONCLUSION: This study clarified important aspects for supporting male cancer patients: timing, content, target audience and steps of information provision. Appropriate information provision from medical staff prior to treatment can be useful in preparing patients for physical appearance changes and decreasing the severity of symptoms.

Providing written information increases patient satisfaction: a web-based questionnaire survey of Japanese cancer survivors.

PURPOSE: The Institute of Medicine (IOM) of the United States recommends that all cancer survivors be provided with a survivorship care plan (SCP), which includes a patient treatment summary and a follow-up care plan. However, SCPs have not been widely adopted in Japan. To provide basic data necessary for implementing SCPs in Japan, we aimed to investigate the forms of clinical and survivorship-related information that Japanese cancer survivors receive from their healthcare providers, and to examine whether written information increases their satisfaction. METHODS: We performed a cross-sectional online survey of cancer survivors who underwent acute cancer treatment and had at least one follow-up with a physician in the past year. Cancer survivors provided the elements and forms (verbally and/or written) of information they received, as well as the degree of satisfaction with the information provided. RESULTS: Responses were obtained from 545 cancer survivors. Information elements such as surgical procedure (98.3%), surgical outcome (98.1%), and names of administered chemotherapy agents (97.8%) were commonly provided, whereas mental care resources and providers (29.7%), effects on marital relationship and sexual health (35.7%), and effects on fertility (43.4%) were less common. A large proportion of cancer survivors received verbal information only. For 18 of 20 elements, except for effects on fertility and duration of hormonal therapy, satisfaction was significantly higher when both forms of information were provided (P < 0.05). CONCLUSIONS: Providing written and verbal explanations of clinical and survivorship-related information can better meet the needs of Japanese cancer survivors.