Identifying Informational Needs of Individuals affected by Osteogenesis Imperfecta and Bridging the Gap to Increase Health Literacy and Patient Engagement Public
Harvey, Petra (Spring 2018)
Published
Abstract
Introduction: Populations affected by rare genetic disorders such osteogenesis imperfecta (OI) often have complex health information needs yet limited resources for timely and accurate information about their condition. It is vital that patient advocacy groups and healthcare providers understand the dynamic informational needs of individuals living with OI and their support networks.
Objective: The study accessed informational needs within the OI community in order to prioritize future OI-related programs and publications. Methods: A needs assessment survey tool was developed and disseminated by the OI Foundation. Ethics approval was secured. Quantitative and qualitative data were collected over a three-week period.
Results: The five highest rated topics for OI-related informational materials and resources include bone/orthopedic (65%), pain management (46%), adult general health (45%), hearing loss (30%), and dental care (30%). Sixty-nine percent of 305 question respondents identified the OIF email newsletter as their most preferred format to access information about OI and the OIF. The second most preferred format (59%) was the OIF website, followed by Facebook (43%).
Discussion: The number of total responses (385), survey completion rate (77%), and number of write-in responses collected over a three-week period indicate a highly engaged and motivated constituent base. The five highest ranked topics for informational materials and resources varied when stratified by age group, gender, and connection to OI. Print and web-based materials are well-utilized, ranking high as preferred formats for OI-related information and resources. While the OIF endeavors to continue expanding webinars, podcasts and more non-traditional modes of disseminating information, other established communication vehicles are valuable and should not be abandoned at this point. The results of the OIF Program Services Survey demonstrate a cost-efficient approach to implementing evidence-based patient education materials and programs.
Table of Contents
Chapter 1: Introduction.................................................................................................4 Chapter 2: Literature Review......................................................................................10 Chapter 3: Methods and Student Contribution ...................................................................27 Chapter 4: Results....................................................................................................30 Chapter 5: Discussion....................................................................................................54 Chapter 6: Population and Public Health Implications.......................................................58 Chapter 7: Journal Article........................................................................................62 References.................................................................................................................82 Appendices....................................................................................................................86
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