Evaluation of the TRANSEND Program

Completed

• Conditions: Pediatric Patient Transfer to Adult Service:Transition Program
• Interventions: Behavioral: survey

• Registration Number: NCT04277286
• Lead Sponsor: Assistance Publique - Hôpitaux de Paris

Brief Summary

"Transend" is a program designed to promote the transition of young patients with endocrine or metabolic diseases when they arrive in the adult sector at La Pitié-Salpétrière hospital. The main objective of the study is to compare the rate of patients lost to follow-up at 24 months after the transfer of pediatrics between the Transend group and the (historical) control group.

Detailed Description

Adolescence and early adulthood represent important periods for young people suffering from chronic diseases. Several observational studies show needs not covered by care services at this period and significant lost to follow-up rates. "Transend" is a program designed to promote the transition of young patients with endocrine or metabolic diseases when they arrive in the adult sector at La Pitié-Salpétrière hospital (Paris, France). Since September 1, 2016, approximately 500 patients benefited from it.

Study Timeline

• Study First Submitted: 2020-01-31
• Study First Submitted QC: 2020-02-17
• Study First Posted: 2020-02-20
• Study Start: 2020-09-09
• Primary Completion: 2020-10-10
• Study Completion: 2020-10-10
• Status Verified: 2021-02
• Last Update Submitted: 2022-02-28
• Last Update Posted: 2022-03-02

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 202

Inclusion Criteria

• Patient aged 18 to 32
• Patient with endocrine or metabolic disease
• Patient who had a follow-up in a pediatric department for his endocrine or metabolic disease
• Patient transferred to the adult sector in the endocrinology, metabolism or nutrition department of Pitié-Salpêtrière
• Patient who had a first post-transfer consultation between January 1, 2015 and September 1, 2017
• Patient with a social security protection

Exclusion Criteria

• Patient who transferred to another adult service before being followed at Pitié-Salpêtrière
• Patient who has expressed his opposition to participate in this research

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Experimental group	survey	Patients transferred to adult service according to the Transend transition program (between September 2016 and January 2018)
Control group	survey	Patients transferred to adult service without a transition program, in the same center, before the implementation of Transend (between January 2015 and September 2016)

Primary Outcome Measures

Name	Time	Method
Rate of patients lost to follow-up at 24 months post transfert	24 months post transfert	Defined by pathology as patients who have not been seen in a medical consultation since a time superior of the recommendation for his state of Heath at 24 months post-transfer and for whom no elements confirm a next consultation in the center nor a follow-up in another center

Secondary Outcome Measures

Name	Time	Method
Number of consultations not honored by the patient	24 to 36 months post transfert	Experimental group: patients transferred to adult service according to the Transend transition program (between September 2016 and January 2018) Control group: patients transferred to adult service without a transition program, in the same center, before the implementation of Traansend (between January 2015 and September 2016)
Assess Transend's efficiency	24 to 36 months post transfret	Cost/incremental cost-effectiveness ratio in cost gained and cost per loss of view
Avoided care consumption and associated costs	24 to 36 months post transfret	Costs associated with hospital emergency room visits, home visit of SOS doctor, unplanned hospitalization
Time to first consultation in adult medicine	24 to 36 months post transfert	Experimental group: patients transferred to adult service according to the Transend transition program (between September 2016 and January 2018) Control group: patients transferred to adult service without a transition program, in the same center, before the implementation of Traansend (between January 2015 and September 2016)
Patient satisfaction	24 to 36 months post transfet	Satisfaction collected on a scale of 0 to 10 where 0 means the worst transfer imaginable resulting an anonymous assessment carried out by the Patients
Compare the experience of the transition betmeen the two Groups	24 to 36 months post transfret	Frequency of feeling broken, continuity, need to contact the paediatrician, attention and perceived availability on the part of professionals on arrival in the adult hospital
Relationship of trust between caregiver and patient	24 to 36 months post transfert	Score calculated by wake Forest scaleis a validated scale of 10 items for the evaluation of the different components of trust.including 3 items on loyalty, 3 items on competence, 1 item on honesty and 3 items on global trust.; (short version) resulting from an evaluation anonymously made by patients

Trial Locations

Locations (1)

Chef du Service d'Endocrinologie et Médecine de le Reproduction, Hôpital de la Pitié-Salpêtrière; 🇫🇷 Paris, France