Mitsue Maru

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.

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.

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.

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.