An observational study in Cystic Fibrosis and Adolescent Behavior, sponsored by University Hospital, Grenoble. Completed at 4 sites in France. Open to participants aged 17 Years to 23 Years, including healthy volunteers. Per ClinicalTrials.gov, last updated 2020-03-30.
Sponsored by University Hospital, Grenoble · Observational
prospective multicentric study protocol in french CF center, exploring adolescent avec parents needs during transition from pediatric CF center to adult CF center
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.
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 their age will be between 17 and 23 years old. living followed in one of the 3 CF center
Exclusion Criteria:
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
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
Identify CF adolescents and their parents needs before transition
Qualitative analysis of interviews
Time frame: 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
Time frame: 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.
What do they need, to feel safe before transition
Identify patients and parents needs
Time frame: 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
Time frame: 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
Time frame: 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
Time frame: comparison between the results with health care practices one year after the last interview will be performed
Plan to share: No
This study is completed, as verified in Mar 2020. You cannot join it, but the record below documents what was studied.
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University Hospital, Grenoble