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Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism

Badiu, C. and Bonomi, M. and Borshchevsky, I. and Cools, M. and Craen, M. and Ghervan, C. and Hauschild, M. and Hershkovitz, E. and Hrabovszky, E. and Juul, A. and Kim, S. H. and Kumanov, P. and Lecumberri, B. and Lemos, M. C. and Neocleous, V. and Niedziela, M. and Djurdjevic, S. P. and Persani, L. and Phan-Hug, F. and Pignatelli, D. and Pitteloud, N. and Popovic, V. and Quinton, R. and Skordis, N. and Smith, N. and Stefanija, M. A. and Xu, C. and Young, J. and Dwyer, A. A. (2017) Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism. Orphanet Journal of Rare Diseases. pp. 1-9. ISSN 1750-1172

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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 ctionability at 90.5%. The patient education materials were culturally adapted and translated into 20 languages (available in Additional file 1). (Continued on next page)

Item Type: Article
Subjects: R Medicine / orvostudomány > R1 Medicine (General) / orvostudomány általában
Depositing User: Prof. Zsolt Liposits
Date Deposited: 29 Mar 2017 14:14
Last Modified: 29 Mar 2017 14:16
URI: http://real.mtak.hu/id/eprint/50644

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