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

Completed

• Conditions: Adolescent Behavior; Cystic Fibrosis
• Interventions: Other: semi structured interviews for all adolescents and their parent

• Registration Number: NCT03298685
• Lead Sponsor: University Hospital, Grenoble

Brief Summary

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

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.

Study Timeline

• Study Start: 2017-06-12
• Study First Submitted: 2017-08-01
• Study First Submitted QC: 2017-09-26
• Study First Posted: 2017-10-02
• Primary Completion: 2018-12-31
• Study Completion: 2018-12-31
• Status Verified: 2020-03
• Last Update Submitted: 2020-03-27
• Last Update Posted: 2020-03-30

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 50

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

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
CF patient and parents cohort in 3 CF center	semi structured interviews for all adolescents and their parent	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.

Primary Outcome Measures

Name	Time	Method
Identify CF adolescents and their parents needs before transition	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.	Qualitative analysis of interviews
Identify CF adolescents and their parents experience after transition	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.	Qualitative analysis of interviews

Secondary Outcome Measures

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

Trial Locations

Locations (4)

Hôpital Femme Mère Enfant, HCL; 🇫🇷 Lyon, France

UniversityHospitalGrenoble; 🇫🇷 Grenoble, France

University Hospital, Clermont-Ferrand; 🇫🇷 Clermont-Ferrand, France

South Hospital of Lyon, HCL; 🇫🇷 Pierre Bénite, France