Background In HD, cognitive, psychiatric and behavioral disorders cause relational difficulties and contribute to the family and social break up of patients. To date, behavioral symptoms are assessed in HD but not the quality of their social relationship.

Aims To create a self-administered questionnaire to assess, in a subjective and ecological way, the quality of the social relations that patients maintain with their family and friends.

Method Meetings of a focus group composed of health professionals, patients’ associations and patients’ relatives around themes such as empathy, altruism, withdrawal allowed selecting 49 items for evaluation on a 6-point likert scale. The provisional questionnaire was administered to 447 subjects (96 patients and 351 healthy participants).

Exploratory factor analyses (Horns parallel analysis and Velicer’s Minimum Average Partial criterion) allowed examining the underlying constructs and characterizing the scale dimensionality of the questionnaire. Items with factor loadings <0.4, or/and communalities <0.3 (uniqueness>0.7) or/and loading on more than 1 factor were deleted. Ultimately, the final factors had to be interpretable and be based on at least 4 variables with loading>0.6 to ensure robust results. Intergroup comparisons were made for each selected dimension.

Results In preliminary analyses, 19 items grouped into 3 dimensions were retained. Scores for each of the dimensions identified were significantly different between HD and healthy participants (p<0.05).

Conclusion The relationship questionnaire is a robust validated scale that measure relationships compared to healthy participants without focusing on symptoms. It is currently assessed in a longitudinal study in France, UK and Germany in the framework of the RepairHD project.