Evaluation of the TRANSEND Program

Study Overview
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Brief Summary
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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
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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.

Official Title
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Non-randomized Experimental Study Evaluating the Impact of Implantation of a New Organization in the Adult Sector Intended to Improve the Transition of Young People With Endocrine or Metabolic Diseases

Conditions
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Pediatric Patient Transfer to Adult Service:Transition Program

Intervention / Treatment
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* Behavioral: survey


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 32 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental group<br>Patients transferred to adult service according to the Transend transition program (between September 2016 and January 2018) | Behavioral: survey<br>* Behavioral study of patients who are in the Transend Program (compliance in follow-up visits after transfert from pediatric to adult care in the 24 months)<br>|
| Control group<br>Patients transferred to adult service without a transition program, in the same center, before the implementation of Transend (between January 2015 and September 2016) | Behavioral: survey<br>* Behavioral study of patients who are in the Transend Program (compliance in follow-up visits after transfert from pediatric to adult care in the 24 months)<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Rate of patients lost to follow-up at 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 | 24 months post transfert | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Number of consultations not honored by the patient | 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) | 24 to 36 months post transfert | 
| Relationship of trust between caregiver and patient | 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 | 24 to 36 months post transfert | 
| Time to first consultation in adult medicine | 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) | 24 to 36 months post transfert | 
| Patient satisfaction | 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 | 24 to 36 months post transfet | 
| Avoided care consumption and associated costs | Costs associated with hospital emergency room visits, home visit of SOS doctor, unplanned hospitalization | 24 to 36 months post transfret | 
| Compare the experience of the transition betmeen the two Groups | 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 | 24 to 36 months post transfret | 
| Assess Transend's efficiency | Cost/incremental cost-effectiveness ratio in cost gained and cost per loss of view | 24 to 36 months post transfret |