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Completed

NCT Number: NCT04277286

Evaluation of the TRANSEND Program

"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.

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Key information

Conditions

Pediatric Patient Transfer to Adult Service:Transition Program

Age range

18 year–32 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Chef du Service d'Endocrinologie et Médecine de le Reproduction, Hôpital de la Pitié-Salpêtrière

Paris, 75013, France

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

survey

Behavioral

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)

Primary outcomes

  1. Rate of patients lost to follow-up at 24 months post transfert

    Time frame: 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 outcomes

  1. Number of consultations not honored by the patient

    Time frame: 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)

  2. Relationship of trust between caregiver and patient

    Time frame: 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

  3. Time to first consultation in adult medicine

    Time frame: 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)

  4. Patient satisfaction

    Time frame: 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

  5. Avoided care consumption and associated costs

    Time frame: 24 to 36 months post transfret

    Costs associated with hospital emergency room visits, home visit of SOS doctor, unplanned hospitalization

  6. Compare the experience of the transition betmeen the two Groups

    Time frame: 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

  7. Assess Transend's efficiency

    Time frame: 24 to 36 months post transfret

    Cost/incremental cost-effectiveness ratio in cost gained and cost per loss of view

Sponsors and collaborators

Lead sponsor

Assistance Publique - Hôpitaux de Paris

Other

Registry information

Official study title

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

Acronym: EVATRANSEND

Important dates

Study start
2020
Primary completion
2020
Study completion
2020
First posted
Feb 20, 2020
Registry last updated
Mar 2, 2022

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.