Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm
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RESEARCH
Open Access
Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism COST Action BM1105, Corin Badiu1, Marco Bonomi2,3, Ivan Borshchevsky4, Martine Cools5, Margarita Craen5, Cristina Ghervan6, Michael Hauschild7, Eli Hershkovitz8, Erik Hrabovszky9, Anders Juul10, Soo-Hyun Kim11, Phillip Kumanov12, Beatriz Lecumberri13, Manuel C. Lemos14, Vassos Neocleous15, Marek Niedziela16, Sandra Pekic Djurdjevic17, Luca Persani3,18,19, Franziska Phan-Hug7, Duarte Pignatelli20, Nelly Pitteloud21, Vera Popovic22, Richard Quinton23, Nicos Skordis24,25, Neil Smith26, Magdalena Avbelj Stefanija27, Cheng Xu21, Jacques Young28 and Andrew A. Dwyer29*
Abstract Background: Patients with rare diseases face health disparities and are often challenged to find accurate information about their condition. We aimed to use the best available evidence and community partnerships to produce patient education materials for congenital hypogonadotropic hypogonadism (CHH) and the olfacto-genital (Kallmann) syndrome (i.e., CHH and defective sense of smell), and to evaluate end-user acceptability. Expert clinicians, researchers and patients co-created the materials in a multi-step process. Six validated algorithms were used to assess reading level of the final product. Comprehensibility and actionability were measured using the Patient Education Materials Assessment Tool via web-based data collection. Descriptive statistics were employed to summarize data and thematic analysis for analyzing open-ended responses. Subsequently, translation and cultural adaption were conducted by clinicians and patients who are native speakers. Results: Co-created patient education materials reached the target 6th grade reading level according to 2/6 (33%) algorithms (range: grade 5.9–9.7). The online survey received 164 hits in 2 months and 63/159 (40%) of eligible patients completed the evaluation. Patients ranged in age from 18 to 66 years (median 36, mean 39 ± 11) and 52/63 (83%), had adequate health literacy. Patients scored understandability at 94.2% and actionability at 90.5%. The patient education materials were culturally adapted and translated into 20 languages (available in Additional file 1). (Continued on next page)
* Correspondence: [email protected] 29 University of Lausanne, Institute of Higher Education & Research in Healthcare and the Endocrinology, Diabetes & Metabolism Service of the Lausanne University Hospital, Route de la Corniche 10, Lausanne 1010, Switzerland Full list of author information is available at the end of the article © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if
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