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

NCT ID: NCT03298685

Last Updated: 2020-03-30

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

50 participants

Study Classification

OBSERVATIONAL

Study Start Date

2017-06-12

Study Completion Date

2018-12-31

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.

Conditions

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Cystic Fibrosis Adolescent Behavior

Study Design

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Observational Model Type

OTHER

Study Time Perspective

PROSPECTIVE

Study Groups

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CF patient and parents cohort in 3 CF center

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.

semi structured interviews for all adolescents and their parent

Intervention Type OTHER

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

Interventions

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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

Intervention Type OTHER

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
Minimum Eligible Age

17 Years

Maximum Eligible Age

23 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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University Hospital, Grenoble

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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LLERENA catherine, MD

Role: PRINCIPAL_INVESTIGATOR

CHU GA Grenobe France

Locations

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University Hospital, Clermont-Ferrand

Clermont-Ferrand, , France

Site Status

UniversityHospitalGrenoble

Grenoble, , France

Site Status

Hôpital Femme Mère Enfant, HCL

Lyon, , France

Site Status

South Hospital of Lyon, HCL

Pierre-Bénite, , France

Site Status

Countries

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France

References

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Bregnballe V, Schiotz PO, Lomborg K. Parenting adolescents with cystic fibrosis: the adolescents' and young adults' perspectives. Patient Prefer Adherence. 2011;5:563-70. doi: 10.2147/PPA.S25870. Epub 2011 Nov 7.

Reference Type BACKGROUND
PMID: 22114471 (View on PubMed)

Kreindler JL, Miller VA. Cystic fibrosis: addressing the transition from pediatric to adult-oriented health care. Patient Prefer Adherence. 2013 Dec 11;7:1221-6. doi: 10.2147/PPA.S37710.

Reference Type BACKGROUND
PMID: 24376344 (View on PubMed)

Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, Slap GB. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993 Nov;14(7):570-6. doi: 10.1016/1054-139x(93)90143-d. No abstract available.

Reference Type BACKGROUND
PMID: 8312295 (View on PubMed)

Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, Livingood W, Reiss J, Wood D. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--Transition Readiness Assessment Questionnaire. J Pediatr Psychol. 2011 Mar;36(2):160-71. doi: 10.1093/jpepsy/jsp128. Epub 2009 Dec 29.

Reference Type BACKGROUND
PMID: 20040605 (View on PubMed)

Davis AM, Brown RF, Taylor JL, Epstein RA, McPheeters ML. Transition care for children with special health care needs. Pediatrics. 2014 Nov;134(5):900-8. doi: 10.1542/peds.2014-1909. Epub 2014 Oct 6.

Reference Type BACKGROUND
PMID: 25287460 (View on PubMed)

Other Identifiers

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2017-A00062-51

Identifier Type: OTHER

Identifier Source: secondary_id

38RC17.005

Identifier Type: -

Identifier Source: org_study_id

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