SAFETIM-needs : Exploring Adolescent's and Parent's Needs During Transition in French CF Centers

Study Overview
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Brief Summary
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prospective multicentric study protocol in french CF center, exploring adolescent avec parents needs during transition from pediatric CF center to adult CF center

Detailed Description
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Adolescent's and parent's needs will be studied, before the transition and their experiences of transition, in order to propose organizational national recommendations semi structured interview with adolescents and parents separately, before and after transition. semi structured interviews will be conducted twice for each (adolescent and parents), the first in the 6 months before transition and the second in the 6 months after transition. After their verbatims will be analyzed and the optimal organisation will be determined for the transition based according to their point of view. At the end, the data from this study will be matched with data collected in a former study from care givers practices during transition in the french CF centers.

Official Title
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SAFETIM Besoins: Suivi Des Adolescents Des Familles et Des Equipes Pour Une Transition Idéale en Mucoviscidose Etude Des Besoins Adolescents et Parent Avant après Transition

Conditions
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Cystic Fibrosis, Adolescent Behavior

Intervention / Treatment
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* Other: semi structured interviews for all adolescents and their parent


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: CF adolescent and their parents , for whom the transition to the adult center is scheduled within six months and witch have freely agreed to participate in the interviews Exclusion Criteria: none

Ages Eligible for Study
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Minimum Age: 17 Years
Maximum Age: 23 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| CF patient and parents cohort in 3 CF center<br>All adolescents for whom the transition to the adult center is scheduled within six months and their parent will be interviewed before and after transition. | Other: semi structured interviews for all adolescents and their parent<br>* Before and after transition, individual semi structured interviews will be recorded by one person in the same way in all CF center. And every interview will be transcribed by an other person<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Identify CF adolescents and their parents needs before transition | Qualitative analysis of interviews | During their systematic appointment at the CF center, patients will have one individual interview during the year before transition. Interviews will be analyzed after all interviews will have been performed. | 
| Identify CF adolescents and their parents experience after transition | Qualitative analysis of interviews | During their systematic appointment at the CF center, patients will have one individual interview during the year after transition. Interviews will be analyzed after all interviews will have been performed. | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| What do they need, to feel safe before transition | Identify patients and parents needs | During their systematic appointment at the CF center, patients and parents will have one individual interview during the year before transition. Interviews will be analyzed after all interviews will have been performed | 
| Do these needs of CFadolescent and their parents taken into account in the transition procedures | Do the procedures take into account the needs of patients and parents | During their systematic appointment at the CF center, patients and parents will have one individual interview during the year after transition. Interviews will be analyzed after all interviews will have been performed | 
| Which factors influence quality of transition other than TPE dimension. | Satisfaction level of Patients and Family After Transition | Interviews will be analyzed after an average of one year after the last interviews will have been performed, both outcome will be matched | 
| Do the resources implemented by the CRCM teams during the adolescent-adult transition matched with adolescents and parents needs and expectations | Identifying key points of the patient's personalized transition, the timing and personalization of the health care course during the transition | comparison between the results with health care practices one year after the last interview will be performed | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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transition, care program, needs