Involving Consumers intheDevelopment ofan Educational Program forCystic Fibrosis Carrier Screening

Summary Input from consumersofhealth carewas sought indeveloping an educational programtobeprovided to individuals whoareconsidering carrier testing forcystic fibrosis (CF). Inaddition, we assessed theability of health professionals topredict consumers' priorities withregard tosuchinformation. A focus groupofsix middle school teachers formulated questions that they would askintrying todecide whether they wanted carrier screening forCF.Then, other adults with(n= 39)andwithout (n= 60) afamily history ofCFwerepresented withthequestions andwereasked toselect thequestions intheorder inwhichthey would wantthemanswered ifoffered thecarrier test.After eachquestion was answered, they were asked whether they would wantthe carrier testifitwereoffered tothem. CFclinic staff, clinical geneticists, andgenetic counselors (n= 31) were asked toselect thequestions intheorder inwhich they believed that anadult fromthegeneral population would wantthemanswered. There werenodifferences intheorder inwhich adults withandwithout afamily history ofCFwould wantquestions answered. Consumers would wanttolearn about thecarrier testaswell astheir risk ofbeing acarrier andofhaving achild with CF,before receiving information onreproductive options andthe effect that achild withCFwouldhave on thefamily. Ofthe44%ofconsumerswhochanged their mindabout wanting screening during the courseofselecting questions, 52%did soafter thefirst question that they selected. Most(82%) ofthose whochanged their decision switched from notwanting towanting screening. Asa group, professionals were notable topredict thepreferences ofconsumers;forthree ofthesixquestions, the mean order selected bygeneticists differed fromthat selected bythe consumers.These findings suggestthat theneeds ofconsumersofhealth carewill bemore adequately metifthey areinvolved inthepreparation ofeducational materials.