Cancer in adolescents and young adults in Japan: epidemiology and cancer strategy.

According to national cancer registry data in Japan, approximately 20,000 adolescents and young adults (AYAs, age 15-39 years) are newly diagnosed with cancer each year. Improvements in treatment and care for AYAs with cancer are included in the Phase Three Basic Plan to Promote Cancer Control Programs in Japan. This article reviews current cancer incidence and survival for AYAs with cancer in Japan using population-based cancer registry data. Mortality data through 2019 from the Vital Statistics of Japan are also described. Encouragingly, the 5-year survival probability for AYA cancers has continued to improve, in parallel with childhood cancers, and the mortality rate has decreased. There has been increasing attention to these vulnerable patients and improved partnerships and collaboration between adult and pediatric oncology; however, obstacles to the care of this population still exist at multiple levels. These obstacles relate to specific areas: research efforts and enrollment in clinical trials on AYA malignancies, AYA-specific psychosocial support such as education, financial support, and oncofertility care, and cancer care systems. It is important for Japanese oncologists, health care providers, and health policy makers to recognize that the AYA population remains vulnerable and still have unmet needs.

Physical and social characteristics and support needs of adult female childhood cancer survivors who underwent hormone replacement therapy.

BACKGROUND: Female childhood cancer survivors who develop gonadal dysfunction require female hormone replacement therapy (HRT) from puberty until menopause. However, the support provided in such cases has not been studied. We investigated the physical and social characteristics and support needs of adult female childhood cancer survivors who underwent HRT. METHODS: Forty-nine adult female childhood cancer survivors completed self-administered questionnaires. We compared the clinical characteristics, health status, and social conditions between a group that underwent HRT and a group that did not, and we surveyed support needs of the group that underwent HRT. RESULTS: The median age of the subjects was 25.0 years (range 20-41). Twenty subjects (40.8%) underwent HRT. A significantly high number of those who underwent HRT also underwent radiation therapy (p < 0.01) and hematopoietic stem cell transplantation (p < 0.001), and none of them had a history of pregnancy or childbirth (p < 0.05). There were no significant differences in physical symptoms and social characteristics between the groups. Those who experienced anxiety regarding fertility required information about HRT, a platform to share their concerns, and psychological support and cooperation among healthcare providers. CONCLUSIONS: Although the subjects of this survey exhibited good social adjustment regardless of whether or not they underwent HRT, they were anxious about fertility. It is important to understand the concerns and anxieties unique to female childhood cancer survivors and to enhance psychological support in addition to providing educational support so that HRT can be administered.

Marriage and fertility in long-term survivors of childhood, adolescent and young adult (AYA) high-grade sarcoma.

PURPOSE: We investigated the marital status and the presence or absence of children in survivors of childhood, adolescent and young adult (AYA) high-grade sarcoma and examined the influence of these factors on the quality of life (QOL) of these survivors. METHODS: Thirty-eight survivors of childhood and AYA high-grade sarcoma (18 males, 20 females) participated in a questionnaire survey on marital status and presence or absence of children, as well as on the health-related QOL (HR-QOL), using the Short Form 36 Health Survey. Diagnoses among these survivors were osteosarcoma (28 participants), Ewing's sarcoma (4 participants), synovial sarcoma (4 participants) and others (2 participants). RESULTS: Of the 18 males who participated in the survey, eight (44.4 %) were married, of whom five (62.5 %) had children. Fifteen (75.0 %) of the 20 females were married, of whom 14 (93.3 %) had children. The proportions of surviving male patients who were married and who had children, respectively, were lower than those of surviving female patients. The proportion of ifosfamide-treated men with children was significantly lower than that of non-ifosfamide-treated men (p = 0.018). With respect to the relationship between marital status and HR-QOL, the scores for the vitality and mental health domains of the SF-36 of survivors who were married were significantly higher than those of unmarried survivors. CONCLUSIONS: The results of our questionnaire survey reveal that among the male survivors of high-grade sarcoma, the proportions of those who were married and of those with children were lower than those of female survivors, suggesting that strategies providing support for marriage and child-rearing may be necessary for the male survivor group. In the married group, mental QOL was high.

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.

Physician preferences and knowledge regarding the care of childhood cancer survivors in Japan: a mailed survey of the Japanese Society of Pediatric Oncology.

OBJECTIVE: Japanese physicians' attitudes regarding the health-care needs of young adult childhood cancer survivors (CCSs) are not well described. Thus, we examined the self-reported preferences and knowledge of pediatric oncologists and surgeons. METHODS: A mailed survey was sent to 858 physician members of the Japanese Society of Pediatric Oncology. We compared the responses of pediatric oncologists and pediatric surgeons. RESULTS: The pediatric oncologists' response rate was 56% (300 out of 533) and that of pediatric surgeons 32% (105 out of 325). The median age of respondents was 46 and 48 years, respectively; 79 and 84% were men. When comfort levels in caring for CCSs were described (i.e. 1 = very uncomfortable; 7 = very comfortable), the mean levels were 4.4 and 3.8 with CCSs ≤ 21 years, 3.6 and 3.6 with 21 years < CCSs ≤ 30 years, and 2.8 and 3.3 with CCSs > 30 years, respectively. In clinical vignette questions, 62% of the pediatric oncologists and 43% of the surgeons answered three or more questions appropriately. Pediatric surgeons reported significantly lower familiarity with long-term follow-up guidelines than pediatric oncologists. Most pediatric oncologists and many surgeons conducted truth-telling of cancer diagnosis to adult CCSs now. They thought that the most important issues are an original long-term follow-up guideline suitable for the Japanese situation and collaborations with adult-based general physicians. CONCLUSIONS: Many Japanese pediatric oncologists are uncomfortable with caring for survivors as they age and have suboptimal knowledge regarding late effects. The change in truth-telling situation and preference for collaboration with adult-based physicians was demonstrated also in Japan.

Japanese clinical guidelines for chronic pain in children and adolescents.

Chronic pain is a common problem in pediatric practice. The prevalence of chronic pain in children is >30%. Because pain indicates emotional expression as well as the physiological reaction toward infection, injury, and inflammation, both physiological and psychological assessments are essential to determine primary interventions for chronic pain. The Japanese Society of Psychosomatic Pediatrics Task Force of clinical practice guidelines for chronic pain in children and adolescents compiled clinical evidence and opinions of specialists associated with the primary care of pediatric chronic pain in the Japanese 'clinical guidelines for chronic pain in children and adolescents' in 2009, which are presented herein. The guidelines consist of three domains: general introduction to chronic pain; chronic abdominal pain; and chronic headache. Each section contains information on the physiological mechanism, psychological aspects, assessment methods, and primary interventions for pediatric chronic pain. These guidelines are expected to help disseminate knowledge on primary interventions for chronic pain in children and adolescents.

Prevalence and barriers to health care transition for adolescent patients with childhood-onset chronic diseases across Japan: A nation-wide cross-sectional survey.

Since the Japan Pediatric Society published its "Recommendations on Transitional Care for Patients with Childhood-Onset Chronic Diseases" in 2014, there has been an increased interest in the health care transition of adolescents with childhood-onset chronic diseases in Japan. However, the actual status of healthcare transition was not studied yet. The purpose of this study was to explore the prevalence of transitional support for adolescent patients with childhood-onset chronic disease and the factors hindering their transition. We conducted an anonymous questionnaire survey in August 2020, targeting physicians and nurses involved in health care transition at 494 pediatric facilities in Japan. Survey items included demographic data, health care systems related to transition to adult departments, health care transition programs based on Six Core Elements (establishing transition policy, tracking and monitoring transition progress, assessing patient readiness for transition, developing the transition plan with a medical summary, transferring the patient, completing the transfer/following up with the patient and family), barriers to transition (34-item, 4-point Likert scale), and expectations in supporting transition (multiple-choice responses), which consisted of five items (78 questions); all questions were structured. Descriptive statistics were used for analysis. Of the 225 responses collected (45.5% response rate), 88.0% were from pediatricians. More than 80% of respondents transferred patients of 20 years or older, but only about 15% had took a structured transition process of four or more based on the Six Core Elements. The top transition barriers were "intellectual disability/rare disease" and "dependence on pediatrics" as patient/family factors, and "lack of collaboration with adult healthcare (relationship, manpower/system, knowledge/understanding)" as medical/infrastructure factors. The study provides future considerations, including the promotion of structured health care transition programs, development of transitional support tailored to the characteristics of rare diseases and disorders, and establishment of a support system with adult departments.

Nurse's perceptions of support for sexual and reproductive issues in adolescents and young adults with cancer.

Adolescent and young adult (AYA) with cancer are at risk for developing sexual and reproductive problems; therefore, they have special needs. AYA with cancer treated in both pediatric and adult wards are a minority in Japan; thus, accumulating experience for supporting this unique patient population is difficult for nurses. Hence, this study aimed to clarify nurses' perceptions on support for sexual and reproductive issues among AYA with cancer. A questionnaire survey was administered to nurses at designated cancer hospitals across Japan who had been working for at least 1 year in a department involved in the treatment or follow-up of patients aged 15-39 years. Nurses were asked regarding their perceptions on support for sexual and reproductive issues faced by AYA with cancer. A total of 865 nurses responded to this survey; nurses affiliated with adult departments, those with more experience in cancer nursing, those affiliated with cancer-related academic and professional societies, and certified nurse specialists or certified nurses significantly recognized insufficient support for sexual and reproductive issues. However, nurses were hesitant and found it difficult to intervene in such issues. Nurses recognized the importance of providing support for sexual and reproductive issues but faced difficulties in addressing them. They need to discuss these issues and improve the care provided to AYA with cancer.

Social independence evaluation index for Japanese patients with childhood-onset chronic diseases.

Introduction: This study established an independent evaluation index for patients with childhood-onset chronic diseases in Japan. Methods: From November to December 2020, three Delphi rounds were conducted. Thirty-nine participants completed at least one survey. We asked them about targets of social independence for 10 types of activities (education/labor/finance/acquisition of necessities/housing/transportation/leisure/social relationship/intimate relationships/sexuality). The Delphi technique was to be repeated until a consensus of over 80% of participants was reached. Results: The targets chosen for measuring independence in patients with childhood-onset chronic diseases were as follows: "Graduation from high school," "Labor for livelihood (including temporary turnover)," "Financially independent (including temporary turnover, excluding students)," "Buy or rent a house and buy the daily necessities and get the public services you need to live," "Do housework alone," "Plan alone and use transportation to get around," "Participate in play/recreation/leisure activities on own initiative," "Engage in relationships with other people outside of a limited environment (home, school, office, hospital, etc.)," "Create and maintain intimate or romantic relationships between individuals (couples, lovers, sexual partners)," and "Use or know how to use contraceptives and how to prevent sexually transmitted diseases." Conclusions: We established an independent evaluation index for patients with childhood-onset chronic diseases in Japan through a three-round Delphi process. The assessment of social independence using our independent evaluation index may help plan for and provide appropriate support and assistance to these patients.

A survey of accuracy of nurses' clinical judgement of cutaneous graft-versus-host disease in Japan.

AIM: We examined accuracy of nurses' clinical judgement of graft-versus-host-disease (GVHD) symptoms and related factors using Common Terminology Criteria for Adverse Events (CTCAE) for patients who developed chronic cutaneous GVHD after haematopoietic stem cell transplants. DESIGN: Cross-sectional design using nationwide survey. METHODS: A questionnaire survey based on Tanner's clinical judgement model to assess patients with chronic cutaneous GVHD using CTCAE was used. Free-text descriptions and statistical analyses of relationship between correct responses and demographic data were performed. RESULTS: The rate of correct responses for main symptoms of skin GVHD was < 50%; there was no statistical significance between correct responses and demographic data, knowledge about GVHD and collaborative practice with physicians. The accuracy of cutaneous GVHD clinical judgements was not directly related to nurses' background. Educational opportunities that reinforce nurses' abilities to reflect on knowledge and experiences to interpret patient symptoms are essential for improving accuracy of clinical judgement.

Uncertainty in Young Adult Survivors of Childhood and Adolescent Cancer with Lower-Extremity Bone Tumors in Japan.

Purpose: Childhood and adolescent survivors of cancerous lower-extremity bone tumors may be at unique risk of uncertainty about their future because of their specific cancer and/or physical disabilities secondary to treatment. This study aimed at clarifying survivors' uncertainty and related factors, including physical functioning, limb pain, and management of affected limbs. Methods: Self-administered questionnaires were distributed at two cancer hospitals in Japan. Thirty-six survivors diagnosed with osteosarcoma or Ewing sarcoma were included in our study. Uncertainty was evaluated by using Mishel's Uncertainty in Illness Scale-Community Form (MUIS-C), and physical functioning was evaluated by using The Toronto Extremity Salvage Score (TESS). Results: The average score of MUIS-C was lower that than reported for other previously studied childhood cancer survivors. Uncertainty was significantly higher in survivors who had lower levels of education, pain in their limbs, and difficulty managing their affected limb. Correlational analyses indicate that high scores for TESS, less limb pain, and high ability to manage affected limbs were related to low uncertainty. Conclusion: Health care providers need to assess survivors' degree of limb pain and their self-management for general health and affected limbs. It might be possible to improve their daily life. Assisting childhood and adolescent survivors of bone tumors to manage affected limbs and limb pain could prevent chronic uncertainty.

Gonadal failure among female patients after hematopoietic stem cell transplantation for non-malignant diseases.

In addition to malignant diseases, hematopoietic stem cell transplantation (HSCT) is also a vital option as a curative therapy for non-malignant diseases, such as immunodeficiency, and other hematological disorders. Not only for malignant diseases, but for non-malignant diseases, cytotoxic therapy of conditioning regimens are associated with high risks of adverse effects; however, clinical details regarding the long term outcomes of cytotoxic therapy for non-malignant diseases are not documented yet. To clarify the endocrinological consequences of pediatric HSCT for non-malignant disease patients, we conducted a retrospective analysis. From 1983 to 2014, 75 patients that underwent HSCT for non-malignant diseases were selected for this study. Of these, 23 patients (19 men, 4 women) were continuously followed up in our institute, with regular health check-ups for late effects. Based on a multiple linear regression analysis, the glucocorticoid treatment duration for chronic graft-versus-host disease (cGVHD) and the conditioning regimen were found to be independent predictors of growth retardation. All four female patients developed hypogonadism, and required hormone replacement therapy. The conditioning regimen for the four female patients with hypogonadism was based on the use of alkylating agents, and two female patients were treated with a reduced-intensity conditioning (RIC) regimen. Our study revealed that even the RIC regimen was toxic for the gonads in female patients, and that the survivors of both non-malignant and malignant diseases should be followed up carefully after pediatric HSCT.

Total body irradiation for hematopoietic stem cell transplantation during early childhood is associated with the risk for diabetes mellitus.

BACKGROUND: Hematopoietic stem cell transplantation (HSCT) is a curative treatment for life-threatening malignancies and related diseases. Recently, the long-term prognosis of HSCT during childhood has greatly improved; however, the late adverse effects of HSCT have been found to cause substantial morbidity among long-term survivors. Although metabolic complications, such as diabetes mellitus (DM) and hyperlipidemia (HL), are the major late effects of pediatric HSCT, the clinical details are not clarified sufficiently. METHODS: From 1983 to 2013, 75 participants underwent HSCT in our institute because of malignant or other related diseases. We retrospectively evaluated metabolic complications of eligible 22 participants (14 men and 8 women), and their clinical backgrounds. RESULTS: Among 22 participants, 4 and 9 participants developed DM and HL after HSCT, respectively, and all participants with DM developed HL. None of the participants with DM were obese, and all had substantial insulin resistance. Total body irradiation (TBI) was performed in 10 participants, including 4 participants with DM and 5 participants with HL, revealing that TBI is an independent risk factor for DM. The age at TBI for participants with DM was significantly lower than that for participants without DM (p = 0.01), and all participants with DM received TBI before the age of 6. CONCLUSIONS: Our data suggested that TBI was a risk factor for DM after HSCT, and TBI before the age of six increased the possibility of DM without obesity.

Validating the Japanese Self-Directed Learning Readiness Scale for Nursing Education.

BACKGROUND: The Self-Directed Learning Readiness Scale for Nursing Education (SDLRSNE) assesses the extent to which an individual has the characteristics, capabilities, and attitudes required for self-directed learning. This study aimed to validate the Japanese version of the SDLRSNE with graduate-level nursing students. METHOD: Confirmatory factor analyses, using data from a cross-sectional online survey of 376 nursing students, were conducted to examine construct validity. Relationships with potential related factors were analyzed to evaluate construct validity. Reliability was evaluated with item analysis and Cronbach's alpha. RESULTS: Factor analyses revealed that three-factor and individual subscale models had a moderate-to-poor fit. No meaningful relationship with potential related factors was noted. Reliability measurements indicated a moderate fit to data. CONCLUSION: This study could not confirm that the Japanese version of the SDLRSNE had acceptable levels of reliability and validity when tested with graduate-level nursing students. Further research is needed to examine the psychometric properties of the Japanese version of the SDLRSNE with other adult nursing learners or with graduate-level nursing students in other countries.

Cancer-related fatigue and physical activity among premenopausal cervical and endometrial cancer survivors in Japan.

PURPOSE: To examine the relationship between cancer-related fatigue (CRF) and physical activity in daily living in premenopausal disease-free cervical and endometrial cancer survivors. METHODS: A physical activity monitor was used to collect objective data on daily physical activity. CRF and related variables were measured using self-report scales in a cross-sectional manner. RESULTS: The average age was 44.9 years among 64 women. The higher CRF group comprised 22 women (34%), 10% of whom had severe fatigue. The participants had higher physical activity levels compared with the findings in previous studies, and reported an average of 40 min/day of moderate to vigorous activity. Moderate to vigorous levels of physical activity were derived from essential social activities rather than leisure time exercise. There were no significant differences in physical activity levels between the lower and higher CRF groups. CONCLUSION: Our study results suggested that the higher level of physical activity in daily living itself had no relationship with decreasing CRF among premenopausal cervical and endometrial cancer survivors. It would be better to focus on cognitive and psychological factors before introducing physical activity programs and be careful of the characteristics of the participants' physical activity among this population in daily basis.

Impact of childhood cancer on maternal employment in Japan.

BACKGROUND: Family members of children with cancer experience various long-term effects as a result of cancer diagnosis and treatment. Therefore, comprehensive and long-term support is needed. As the employment rate of women has increased in recent years, support for working mothers with children diagnosed with cancer is also required. OBJECTIVE: We investigated the following issues and relevant changes that working mothers of children diagnosed with cancer must deal with: (1) work change, (2) stress, (3) social support, (4) work motivation, and (5) employment status after diagnosis. METHODS: A cross-sectional exploratory study design was used. Data were collected from 62 mothers of children who were diagnosed with cancer using self-report questionnaires. RESULTS: Of the 32 mothers who worked at the time of diagnosis, 10 continued to work, 12 took an extended leave, and 10 quit working, and 70% lost motivation for work following diagnosis. Half of mothers who continued to work during treatment reported financial reasons. CONCLUSIONS: These findings indicate that mothers who quit work following diagnosis did not initially consider a long leave of absence. Even mothers who continued to work during treatment desired a long leave of absence to care for their children. IMPLICATIONS FOR PRACTICE: Nurses should provide mothers with explanations of the prospects after the completion of cancer treatment and determine their expectations for their lifestyle and work during treatment. We recommend that nurses confirm mothers' willingness to take a long leave of absence from work and give relevant advice about seeking financial assistance.

The transition of adult patients with childhood-onset chronic diseases from pediatric to adult healthcare systems: a survey of the perceptions of Japanese pediatricians and child health nurses.

BACKGROUND: Advances in medical science have enabled many children with chronic diseases to survive to adulthood. The transition of adult patients with childhood-onset chronic diseases from pediatric to adult healthcare systems has received attention in Europe and the United States. We conducted a questionnaire survey among 41 pediatricians at pediatric hospitals and 24 nurses specializing in adolescent care to compare the perception of transition of care from pediatric to adult healthcare services for such patients. FINDINGS: Three-fourths of the pediatricians and all of the nurses reported that transition programs were necessary. A higher proportion of the nurses realized the necessity of transition and had already developed such programs. Both pediatricians and nurses reported that a network covering the transition from pediatric to adult healthcare services has not been established to date. CONCLUSIONS: It has been suggested that spreading the importance of a transition program among pediatricians and developing a pediatric-adult healthcare network would contribute to the biopsychosocial well-being of adult patients with childhood-onset chronic disease.