Evaluation of quality and readability of online patient information on osteoporosis and osteoporosis drug treatment and recommendations for improvement

SUMMARY: Patient information is important to help patients fully participate in their healthcare. Commonly accessed osteoporosis patient information resources were identified and assessed for readability, quality, accuracy and consistency. Resources contained inconsistencies and scored low when assessed for quality and readability. We recommend optimal language and identify information gaps to address. INTRODUCTION: The purpose of this paper is to identify commonly accessed patient information resources about osteoporosis and osteoporosis drug treatment, appraise the quality and make recommendations for improvement. METHODS: Patient information resources were purposively sampled and text extracted. Data extracts underwent assessment of readability (Flesch Reading Ease and Flesch-Kincaid Grade Level) and quality (modified International Patient Decision Aid Standards (m-IPDAS)). A thematic analysis was conducted, and keywords and phrases were used to describe osteoporosis and its treatment identified. Findings were presented to a stakeholder group who identified inaccuracies and contradictions and discussed optimal language. RESULTS: Nine patient information resources were selected, including webpages, a video and booklets (available online), from government, charity and private healthcare providers. No resource met acceptable readability scores for both measures of osteoporosis information and drug information. Quality scores from the modified IPDAS ranged from 21 to 64% (7–21/33). Thematic analysis was informed by Leventhal’s Common-Sense Model of Disease. Thirteen subthemes relating to the identity, causes, timeline, consequences and controllability of osteoporosis were identified. Phrases and words from 9 subthemes were presented to the stakeholder group who identified a predominance of medical technical language, misleading terms about osteoporotic bone and treatment benefits, and contradictions about symptoms. They recommended key descriptors for providers to use to describe osteoporosis and treatment benefits. CONCLUSIONS: This study found that commonly accessed patient information resources about osteoporosis have highly variable quality, scored poorly on readability assessments and contained inconsistencies and inaccuracies. We produced practical recommendations for information providers to support improvements in understanding, relevance, balance and bias, and to address information gaps. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00198-020-05800-7.