Enhancing the readability of materials describing genetic risk for breast cancer.
BACKGROUND
The number of individuals contemplating genetic testing is increasing, but the current materials and overall subject matter remain complex and not easily understood by many. The goal of this project was to evaluate efforts to revise and increase the readability of an existing information packet describing genetic risk for breast cancer.


METHODS
Evaluation was conducted in two stages through two related studies. In Study 1, a focus group of multiethnic breast cancer survivors was assembled to obtain feedback on images included in the revised breast cancer genetics information packet. In Study 2, African American adult students in a literacy program evaluated the revised images (based on the feedback of the focus group in Study 1) and text of the information packet and provided ratings on readability, format, and appearance.


RESULTS
Responses from Study 1 participants suggested that some of the images created for the packet needed to be clearer in the concepts they were intended to convey. In Study 2, ratings of adult learners suggested difficulty with word comprehension in spite of the inclusion of definitions and a glossary. The reading level achieved was markedly lower than the college reading level required by the original information packet and other patient-directed cancer genetics materials.


CONCLUSIONS
Although efforts to clarify written materials in order to better serve patients with low literacy received generally favorable responses, continued efforts to create more user-friendly patient education materials are warranted.
Ruttenberg Cancer Center, New York, NY 10029, USA. hayley.thompson@mssm.edu
Hayley S
HS
Thompson
Erica
E
Wahl
Anne
A
Fatone
Karen
K
Brown
Naa Oyo A
NO
Kwate
Heiddis
H
Valdimarsdottir
D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics*; D032882:Comprehension; D004522:Educational Status; D005260:Female; D017144:Focus Groups; D020022:Genetic Predisposition to Disease; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D009518:New York; D010353:Patient Education as Topic / Q000379:methods*; D017741:Survivors; D013664:Teaching Materials