Advertisement

Topics

Evaluation of the Information Letter to Relatives in the Context of Genetic Assessments

2015-12-22 06:38:21 | BioPortfolio

Summary

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.

Description

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.

Study Design

Time Perspective: Prospective

Conditions

Transmission of Information to the Relatives After Genetic Diagnosis

Intervention

Questionnaire after the reading of letter B., Questionnaire after the reading of letters A and B

Location

University Hospital Bordeaux
Bordeaux
Aquitaine
France
33000

Status

Completed

Source

University Hospital, Bordeaux

Results (where available)

View Results

Links

Published on BioPortfolio: 2015-12-22T06:38:21-0500

Clinical Trials [2173 Associated Clinical Trials listed on BioPortfolio]

Treatment for Reading and Writing Deficits Following Acquired Brain Injury

Many people with acquired brain injuries have deficits in reading decoding, reading comprehension, and written expression. Alexia is a phenomenon in which a person who previously could rea...

Reading Together: How to Promote Children's Language Development Using Family-based Shared Book Reading

The aim of this project is to determine how shared reading promotes child language development, and to use this knowledge to make it an effective language-boosting tool for children from a...

Improving Response to Intervention in Students With or at Risk of Reading Disabilities

The purpose of the proposed studies is to examine a reading intervention for fourth grade students with reading difficulties that integrate work in mindset (beliefs about whether abilities...

Reading Problems in Children Living in Urban Areas

The first line of defense against reading disabilities is good classroom reading instruction. This study describes how characteristics of students, teachers, and instruction relate to aca...

Headsprout Reading Program in Children With Autism Spectrum Disorder and Reading Delay

Headsprout is a commercially available computer-based reading program that teaches children fundamental reading skills, including phonics, fluency, and comprehension. The Headsprout readin...

PubMed Articles [6973 Associated PubMed Articles listed on BioPortfolio]

Knowledge about writing influences reading: Dynamic visual information about letter production facilitates letter identification.

How are reading and writing related? In this study, we address the relationship between letter identification and letter production, uncovering a link in which production information can be used to id...

Do all visual deficits cause pure alexia? Dissociations between visual processing and reading suggest "no".

Pure alexia is a deficit of reading affecting the ability to process a word's letters in parallel. Instead, a slow, effortful letter-by-letter reading strategy is employed. It has been claimed that a ...

Visual letter similarity effects during sentence reading: Evidence from the boundary technique.

The study of how the cognitive system encodes letter identities from the visual input has received much attention in models of visual word recognition but it has typically been overlooked in models of...

Benefits of low vision aids to reading accessibility.

The Reading Accessibility Index (ACC) has been proposed as a single-value reading parameter that can capture information on both reading speed and print sizes that can be read. It is defined as the av...

Reading direction influences lateral biases in letter processing.

Humans have a limited capacity to identify concurrent, briefly presented targets. Recent experiments using concurrent rapid serial visual presentation of letters in horizontally displaced streams have...

Medical and Biotech [MESH] Definitions

Self report questionnaire which yields 16 scores on personality traits, such as reserved vs. outgoing, humble vs. assertive, etc.

A cognitive disorder characterized by an impaired ability to comprehend written and printed words or phrases despite intact vision. This condition may be developmental or acquired. Developmental dyslexia is marked by reading achievement that falls substantially below that expected given the individual's chronological age, measured intelligence, and age-appropriate education. The disturbance in reading significantly interferes with academic achievement or with activities of daily living that require reading skills. (From DSM-IV)

A self-administered version of the Primary Care Evaluation of Mental Disorders (PRIME-MD), a diagnostic tool containing modules on multiple mental health disorders including anxiety, alcohol, eating, and somatoform modules. The Patient Health Questionnaire (PHQ-9) is designed specifically for mood/depression scoring each of the 9 DSM-IV criteria based on the mood module from the original PRIME-MD. The Generalized Anxiety Disorder scale (GAD-7) scores 7 common anxiety symptoms.

DNA sequences that form the coding region for at least three proteins which regulate the expression of HUMAN T-LYMPHOTROPIC VIRUS 1 and HUMAN T-LYMPHOTROPIC VIRUS 2. The proteins are p21(x), p27(rex), and p40(tax). The tax (trans-activator x) and rex (regulator x) genes are part of pX but are in overlapping reading frames. X was the original designation for the sequences or region (at that time of unknown function) in the long open reading frame (lor) which is now called pX.

More From BioPortfolio on "Evaluation of the Information Letter to Relatives in the Context of Genetic Assessments"

Advertisement
Quick Search
Advertisement
Advertisement

 

Searches Linking to this Trial