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| ID | Type | Description | Link |
|---|---|---|---|
| 2017-A00062-51 | Other Identifier | ID RCB |
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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
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| 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. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| semi structured interviews for all adolescents and their parent | 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 |
| 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. |
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
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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
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| Name | Affiliation | Role |
|---|---|---|
| LLERENA catherine, MD | CHU GA Grenobe France | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University Hospital, Clermont-Ferrand | Clermont-Ferrand | 63003 | France | |||
| UniversityHospitalGrenoble |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 22114471 | Background | 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. | |
| 24376344 | Background | 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. |
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| ID | Term |
|---|---|
| D003550 | Cystic Fibrosis |
| D000294 | Adolescent Behavior |
| ID | Term |
|---|---|
| D010182 | Pancreatic Diseases |
| D004066 | Digestive System Diseases |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
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| 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 |
| Grenoble |
| 38043 |
| France |
| Hôpital Femme Mère Enfant, HCL | Lyon | 69322 | France |
| South Hospital of Lyon, HCL | Pierre-Bénite | 69495 | France |
| 8312295 | Background | 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. |
| 20040605 | Background | 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. |
| 25287460 | Background | 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. |
| D030342 |
| Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D007232 | Infant, Newborn, Diseases |
| D001519 | Behavior |