Lakshmanan Krishnamurti|Diana Ross|Cynthia Sinha|Traci Leong|Namita Bakshi|Nonita Mittal|Divya Veludhandi|Anh-Phuong Pham|Alankrita Taneja|Kamesh Gupta|Julum Nwanze|Andrea Matthews|Saumya Joshi|Veronica Vazquez Olivieri|Santhi Arjunan|Ifechi Okonkwo|Ines Lukombo|Peter A. Lane|Nitya Bakshi|George Loewenstein
Comparative Effectiveness of a Web-Based Patient Decision Aid for Therapeutic Options for Sickle Cell Disease: Randomized Controlled Trial
Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Children's Healthcare of Atlanta|Emory University|Decision Sciences (United States)|Decision Research|Carnegie Mellon University
hydroxyurea chronic blood transfusions bone marrow transplantation efficacious diseasemodifying therapies sickle cell disease involve complex riskbenefit tradeoffs decisional dilemma compounded lack comparative studies patient decision aid inform patients treatment options associated risks benefits help clarify values allow participate medical decision makingthe objective study develop literacysensitive webbased patient decision aid based ottawa decision support framework randomized clinical trial estimate effectiveness patient decision aid improving patient knowledge involvement decision makingwe conducted population decisional needs assessments nationwide sample patients caregivers community advocates policy makers health care providers using qualitative interviews identify decisional conflict knowledge expectations values support resources decision types timing stages learning personal clinical characteristics interview transcripts coded using qsr nvivo 10 alpha testing patient decision aid prototype done establish usability accuracy information conveyed followed iterative cycles beta testing conducted randomized clinical trial adults caregivers pediatric patients evaluate efficacy patient decision aidin decisional needs assessment 223 stakeholders described preferences helping guide development patient decision aid underwent alpha testing 30 patients 38 health care providers iterative cycles beta testing 87 stakeholders randomized clinical trial 120 participants assigned either patient decision aid standard care sc arm qualitative interviews revealed high levels usability acceptability utility patient decision aid education values clarification preparation decision making acceptability survey 72 86120 participants rated patient decision aid good excellent participants patient decision aid arm compared sc arm demonstrated statistically significant improvement decisional selfefficacy p05 reduction informed subscore decisional conflict p003 3 months improvement preparation decision making p001 6 months however improvement terms change knowledge total domain scores decisional conflicts decisional selfefficacies 6 months large amount missing data survey completion limited ability draw conclusions effectiveness patient decision aid patient decision aid met 61 62 benchmarks international patient decision aid collaboration standards content development process efficacywe developed patient decision aid sickle cell disease extensive input stakeholders randomized clinical trial demonstrated acceptability utility education decision making unable demonstrate effectiveness improving patient knowledge involvement decision makingclinicaltrialsgov nct03224429 httpsclinicaltrialsgovct2shownct03224429 clinicaltrialsgov nct02326597 httpsclinicaltrialsgovct2shownct02326597