Endocrine Disorder, Rare Disorders
Conditions
Keywords
Transition to adult care, Transition of care, Young adults, Endocrinology, Rare endocrine diseases, pediatric endocrinology
Brief summary
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.
Detailed description
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.
Interventions
BEHAVIORALStructured Transition-of-Care Program
The program includes assessment of transition readiness and disease knowledge, individualized education, preparation of a clinical information summary and disease-specific checklist, coordinated transfer between pediatric and adult endocrinology teams, and structured follow-up after transfer.
Sponsors
Seoul National University Hospital
SNUH Lee Kun-hee Child Cancer & Rare Disease Project
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* 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.
Exclusion criteria
* none
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Proportion of Participants Successfully Transferred to Adult Endocrinology Care | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change in Transition-Related Anxiety Score | Baseline and at the first or second adult endocrinology visit after transfer | Transition-related anxiety will be assessed at baseline and after transition to adult care using the study-specific transition evaluation questionnaire. Change will be calculated as the post-transition score minus the baseline score, with higher scores indicating greater transition-related anxiety. |
| Participant Satisfaction With the Transition Process | Baseline and at the first or second adult endocrinology visit after transfer | Participant satisfaction with the transition program and adult-oriented care will be assessed using the post-transition evaluation questionnaire. The total score will be calculated according to the study-specific scoring method, with higher scores indicating greater satisfaction. |
| Retention in Adult Endocrinology Care at 12 Months | 12 months after the first adult endocrinology visi | The proportion of participants who remain in adult endocrinology care at 12 months after their first adult endocrinology visit will be assessed. Retention will be defined as continued attendance at scheduled adult endocrinology follow-up visits during the 12-month period. |
| Change in Transition Readiness Assessment Questionnaire Score | Baseline and at the first or second adult endocrinology visit after transfer | Transition readiness will be assessed using the Transition Readiness Assessment Questionnaire at baseline and after transition to adult care. Scores will be calculated according to the validated scoring method, with higher scores indicating greater transition readiness. Change will be calculated as the post-transition score minus the baseline score. |
Countries
South Korea
Contacts
CONTACTYun Jeong Lee
CONTACTYunsoo Choe
PRINCIPAL_INVESTIGATORYun Jeong Lee
Seoul National University Hospital
Outcome results
None listed