Transition of Care in Pediatric Rare Endocrine Disorders: Assessing Unmet Needs and Implementing a Standardized Transition Program
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 150
- 试验地点
- 11
- 主要终点
- Proportion of Participants Successfully Transferred to Adult Endocrinology Care
研究概览
简要总结
This study will evaluate the transition from pediatric to adult care in patients with pediatric-onset rare endocrine disorders. The study includes three components: a review of medical records to assess previous transition outcomes, a survey of adult patients about transition experiences and quality of life, and an evaluation of a structured transition program for participants aged 18 years or older. The transition program provides assessment of transition readiness, individualized education, clinical information transfer, coordinated care between pediatric and adult endocrinology teams, and follow-up after transfer. Researchers will evaluate transfer and retention in adult care, transition readiness, quality of life, appointment attendance, satisfaction, and clinical outcomes.
详细描述
This study consists of three components. First, current transition practices and outcomes will be evaluated through retrospective medical record review. Second, a survey of adult patients will assess their transition experiences, unmet needs, and quality of life. Third, a standardized transition program will be prospectively evaluated in eligible participants preparing to transfer from pediatric to adult endocrinology care.
The transition program includes standardized assessment of transition readiness, disease knowledge, quality of life, and psychological status, together with individualized education, preparation of a clinical information summary and disease-specific checklist, coordinated transfer between pediatric and adult endocrinology teams, and follow-up after transfer.
The study is designed to characterize current transition practices and unmet needs and to evaluate whether a standardized transition program can improve the transition from pediatric to adult endocrine care.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Health Services Research
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Age 18 years or older.
- •Diagnosis of a pediatric-onset rare endocrine disorder, including rare metabolic bone and mineral disorders, hypopituitarism, congenital adrenal hyperplasia, rare endocrine tumors, and syndromic or chromosomal disorders requiring endocrine care.
- •Currently receiving follow-up care in the pediatric endocrinology department of a participating institution.
- •Willing to participate in the standardized transition-of-care program and able to provide written informed consent.
排除标准
- 未提供
研究组 & 干预措施
Structured Transition-of-Care Program
Participants will receive a structured transition-of-care program including assessment of transition readiness and disease knowledge, individualized education, preparation of a clinical information summary and disease-specific checklist, coordinated transfer from pediatric to adult endocrinology care, and structured follow-up after transfer.
干预措施: Structured Transition-of-Care Program (Behavioral)
结局指标
主要结局
Proportion of Participants Successfully Transferred to Adult Endocrinology Care
时间窗: Within 6 months after transfer to adult endocrinology care
The proportion of participants who successfully transfer to adult endocrinology care will be calculated as the number of participants who complete their first adult endocrinology outpatient visit after transfer from pediatric care divided by the number of participants enrolled in the standardized transition-of-care program.
次要结局
- Change in Transition Readiness Assessment Questionnaire Score(Baseline and at the first or second adult endocrinology visit after transfer)
- Change in Transition-Related Anxiety Score(Baseline and at the first or second adult endocrinology visit after transfer)
- Participant Satisfaction With the Transition Process(Baseline and at the first or second adult endocrinology visit after transfer)
- Retention in Adult Endocrinology Care at 12 Months(12 months after the first adult endocrinology visi)
研究者
Yun Jeong Lee
Assistant Professor
Seoul National University Hospital