Transmission of Information to the Relatives After Genetic Diagnosis Clinical Trial
Official title:
Evaluation of the Information Letter to Relatives in the Context of Genetic Assessments
The decree of June 20th 2013 (n° 2013-527) suggests a protocol regarding the transmission of information to the relatives after genetic diagnosis of a serious condition. This decree includes a specific model of letter that can be sent to relatives by genetic professionals. We evaluated the understanding and feelings after the reading of the decree's letter (letter A) on patients and the public. A focus group drafted a new version of the letter (letter B) through these observations. The two letter models (A vs B) are compared in terms of impact through precise items (understanding and feelings) on three populations: patients, public and genetic professionals. Assumption is made that the letter B will be preferred to the letter A. Overall, we aim at giving a letter formulation accommodating as many people as possible to standardize practices.
The recent publication of the decree of June 20th 2013 (n° 2013-527) suggests a protocol
regarding the transmission of information of the relatives after genetic diagnosis of a
serious condition allowing preventative or care measures. In the case a mutation career
refuses to directly inform other members of his family, option is to call on services of a
genetic professional for the transmission of its family information. This decree includes a
specific model of letter that can be sent to relatives by genetic professionals.
The main objective of the present study is the standardization of the procedure concerning
the information to relatives by all genetic professionals. It would allow the same format of
information in all families involved.
The first part (study 1a) evaluated the understanding and feelings after the reading of the
decree's letter (letter A) on patients and the public, through the use of an individual and
oral questionnaire. Interviews with the patients, public, genetic professionals and people
who have received this letter completed the study 1a (study 1b). A focus group (accounting
different genetic professionals and patient associations) composed a new version of letter
(letter B) through these observations (study 1c).
The second part will compare the two letters model (A vs B) impact through precise items on
three populations: patients, public and genetic professionals. This study will allow to:
- Evaluate how the letter composed by the focus group (letter A) is understood and
perceived by the patients and the public with the same methodology as study 1a (study
2a) ;
- Compare the two letters model (A vs B) to describing the preference of patients, public
and genetic professionals (study 2b).
The expected results would help us to choose the letter accommodating as many people as
possible to standardize practices.
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Time Perspective: Prospective