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

Abstract

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.

Transition practice for primary immunodeficiency diseases in Southeast Asia: a regional survey

“…However, these adult patients often face complications possibly attributed to various factors such as age-related changes in therapeutic areas, poor treatment adherence and the development of other non-communicable diseases. In response, the Japan Pediatric Society published a consensus statement in 2014 titled “Proposal for Transitional Care for Patients with Childhood-Onset Diseases’’ based on the six core elements recommended by The American Academy of Pediatrics (AAP), The American Academy of Family Physicians (AAFP) and the American Board of Internal Medicine ( 12 ). The six core elements included: (i) establishing the transition policy; (ii) tracking and monitoring transition progress; (iii) assessing the patient’s readiness for transition; (iv) developing the transition plan with a medical summary; (v) transferring the patient; and (vi) completing the transfer and following up with patient and family ( 13 ).…”

“…The six core elements included: (i) establishing the transition policy; (ii) tracking and monitoring transition progress; (iii) assessing the patient’s readiness for transition; (iv) developing the transition plan with a medical summary; (v) transferring the patient; and (vi) completing the transfer and following up with patient and family ( 13 ). However, to date, after a decade since the establishment of the consensus, Sakurai and colleagues reported that transition support was still limited due to various barriers involving patients, caregivers, and healthcare providers whereby only a few departments and individuals were dedicated to the transition process ( 12 ). To ensure synergy among the triad of relationships involving patients, caregivers, and healthcare providers, it is imperative to adopt a shared patient-centered and family-centered decision-making process among pediatric and adult teams to help make the transition process less stressful for patients and caregivers ( 4 ).…”

“…Therefore, the practice of rural patients traveling to urban areas to seek better healthcare services in the adult department increases the risk of patients facing destitution of care. In Japan, a similar issue was encountered where subsidies for medical expenses for pediatric diseases ceased to be available when the child reached 20 years of age ( 12 ). Studies cited that this was a major drawback in patients’ lives as they commonly faced difficulties in achieving financial independence due to low income and low employment rate, possibly attributed to the absenteeism from work for regular treatment and follow up.…”

“…Studies cited that this was a major drawback in patients’ lives as they commonly faced difficulties in achieving financial independence due to low income and low employment rate, possibly attributed to the absenteeism from work for regular treatment and follow up. As a result, patients are not eligible to obtain employer-based health insurance and indirectly increase the burden of caregivers to support their children at the age of retirement ( 12 ). This phenomenon is also true in Singapore, whereby experts explained that patients who started working will eventually lose their insurance coverage.…”

Navigating the transition of care in patients with inborn errors of immunity: a single-center’s descriptive experience

“…Transition to adulthood is recognized as a complicated process for youth in general and more so in those with special health care needs ( 2 , 3 ). While moving toward adulthood, adolescents with special health care needs must learn how to self-manage their medical needs as well as face an imminent shift in service location.…”