Development of a scale to assess the background, needs, and expectations of genetic counseling clients

Genetic professionals seek to tailor their counseling to meet the background, needs, and expectations (BNE) of their clients. We present the development of a new instrument, the BNE Scale, designed to assess BNE in genetic counseling clients. The initial items for the scale were created based on a review of the literature and clinical experience. The draft scale was piloted tested with 10 subjects, using cognitive interviewing techniques. Based on those results, a revised 82-item-scale was created and posted online. It was completed by 608 adult subjects who have experience with Down syndrome, Marfan syndrome, or neurofibromatosis. Responses were analyzed in aggregate based on clinically relevant item groupings. Exploratory factor analysis was used to refine the item groupings, and these groups were evaluated for reliability and cross-correlations. As a result, 61 items across 16 subscales were retained for the final BNE Scale. Further, the subscales were segregated thematically into four groups: (1) Beliefs which includes the Consequences, Unsureness, Feelings, and Treatment subscales, (2) Social Support which includes the Spousal (or Partner) Support, Family Support, Friend Support, Healthcare Provider Support, Faith/God Support, and Support Group Interest subscales, (3) Needs which includes the Need for Information, Need for Context, and Need for Provider Input subscales, and (4) Expectations which includes the Education, Counseling, and Desired Feelings subscales. These data provide initial support for the BNE Scale as a psychometrically acceptable means to assess the clients' background, needs and expectations of genetic counseling.