Corin Badiu|Marco Bonomi|Ivan Borshchevsky|Martine Cools|Margarita Craen|Cristina Ghervan|Michael Zwicky Hauschild|Eli Hershkovitz|Erik Hrabovszky|Anders Juul|Yeon Joo Kim|Phillip Kumanov|Beatriz Lecumberri|Manuel C. Lemos|Vassos Neocleous|Marek Niedziela|Sandra Pekic Djurdjevic|Luca Persani|Franziska Phan-Hug|Duarte Pignatelli|Nelly Pitteloud|Vera Popovi?|Richard Quinton|Nicos Skordis|Neil Smith|Magdalena Avbelj Stefanija|Chao Xu|Jacques Young|Andrew A. Dwyer
Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism
Carol Davila University of Medicine and Pharmacy|University of Milan|Ghent University Hospital|Ghent University Hospital|Iuliu Ha?ieganu University of Medicine and Pharmacy|Ben-Gurion University of the Negev|Soroka Medical Center|Hungarian Academy of Sciences|HUN-REN Institute of Experimental Medicine|Rigshospitalet|St George's, University of London|Medical University of Sofia|Hospital La Paz Institute for Health Research|University of Beira Interior|Cyprus Institute of Neurology and Genetics|Poznan University of Medical Sciences|University of Belgrade|University of Milan|Hospital de São João|University of Lausanne|University of Belgrade|Royal Victoria Infirmary|Newcastle University|Rail Delivery Group|Ljubljana University Medical Centre|University of Lausanne|Bicêtre Hospital|University of Lausanne
patients rare diseases face health disparities often challenged find accurate information condition aimed use best available evidence community partnerships produce patient education materials congenital hypogonadotropic hypogonadism chh olfactogenital kallmann syndrome ie chh defective sense smell evaluate enduser acceptability expert clinicians researchers patients cocreated materials multistep process six validated algorithms used assess reading level final product comprehensibility actionability measured using patient education materials assessment tool via webbased data collection descriptive statistics employed summarize data thematic analysis analyzing openended responses subsequently translation cultural adaption conducted clinicians patients native speakerscocreated patient education materials reached target 6th grade reading level according 26 33 algorithms range grade 5997 online survey received 164 hits 2 months 63159 40 eligible patients completed evaluation patients ranged age 18 66 years median 36 mean 39 11 5263 83 adequate health literacy patients scored understandability 942 actionability 905 patient education materials culturally adapted translated 20 languages available additional file 1partnering patients enabled us create patient education materials met patient identified needs evidenced high enduser acceptability understandability actionability webbased evaluation effective reaching dispersed rare disease patients combining dissemination via traditional healthcare professional platforms well patientcentric sites facilitate broad uptake culturally adapted translations process may serve roadmap creating patient education materials rare diseases