TO DIAGNOSIS EMBRYONIC DEVELOPMENTAL ANOMALIES OF GENETIC ORIGIN WITH EXOME SEQUENCING- A DISCRETE CHOICE EXPERIMENT TO ASSESS PARENTS’ PREFERENCES FOR DISCLOSURE OF FINDINGS AND SUPPORT

Author(s)

Pelissier A, Peyron C, Bejean S
University of Bourgogne Franche Comté, Dijon cedex, France

OBJECTIVES: To investigate parents preferences and willingness to pay for the “communication of next-generation sequencing results” in the context of children rare diseases with development disorders, to guide information and choice processes that could be proposed by clinicians in order to inform the consent procedure. METHODS: The discrete choice experiment includes six attributes: 1. the appearance of uncertain results and 2. the communication of incidental results. 3. the possibility to analyze the results later or never, automatically, or at the patient’s request 4. the identity of the person who makes the decision to communicate the results 5. the accompaniment of patients 6. the hypothetical price of the test. Six versions of the questionnaire, each consisting of six choices sets allowing to choose between two unlabeled alternatives – drawn from an orthogonal optimal design – were randomly administered to 528 respondents during individuals meetings at the university hospitals of Dijon and Lyon between February and December 2015. RESULTS: A total of 6156 observations is analyzed as 513 respondents fully completed the DCE questionnaire. The presence of dominant preferences is examined and rejected. Estimations are based on Conditional Logit estimations first and then heterogeneity of preferences is assessed with Latent Class Models. Results underlined the importance of certain attributes and attributes levels, relative to the others, in the decision-making process to choose a test. Particularly, the nature of the findings and the identity of the person who finally makes the decision to communicate the results appears to be the most important attributes. CONCLUSIONS: Our study confirmed the plurality of the dimensions to be integrated in order to inform the consent procedure for NGS and reveal the priority the children’s parents give to the different dimension of the communication of NGS results.

Conference/Value in Health Info

2016-10, ISPOR Europe 2016, Vienna, Austria

Value in Health, Vol. 19, No. 7 (November 2016)

Code

PND61

Topic

Patient-Centered Research

Topic Subcategory

Stated Preference & Patient Satisfaction

Disease

Rare and Orphan Diseases

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