Transition of Care in Pediatric Rare Endocrine Disorders
Trial statusRecruiting
Trial phaseNot applicable
Trial typeInterventional
Biological sexAll
Age18+
SponsorSeoul National University Hospital
About this trial
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.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
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.
Disqualifiers
none
Trial design
Design model
Single group
Treatments tested in this trial
Structured Transition-of-Care Program
BehavioralThe 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.
Treatment groups
150 Participants
are divided into 1 treatment groupGroup A: Structured Transition-of-Care ProgramExperimental treatment 1 intervention
Trial outcomes
Primary outcomes
1
Proportion of Participants Successfully Transferred 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.
Time frame
Within 6 months after transfer to adult endocrinology careSecondary outcomes
1
Change in Transition Readiness Assessment Questionnaire Score
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.
Time frame
Baseline and at the first or second adult endocrinology visit after transfer2
Change in Transition-Related Anxiety Score
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.
Time frame
Baseline and at the first or second adult endocrinology visit after transfer3
Participant Satisfaction With the Transition Process
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.
Time frame
Baseline and at the first or second adult endocrinology visit after transfer4
Retention in Adult Endocrinology Care at 12 Months
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.
Time frame
12 months after the first adult endocrinology visiSponsors and contacts
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Seoul National University Hospital
Lead sponsor
SNUH Lee Kun-hee Child Cancer & Rare Disease Project
Collaborator
Source ClinicalTrials.gov