RECOMMENDATIONS TO IMPROVE QUALITY OF PATIENT INFORMATION MATERIALS IN OSTEOPOROSIS: RESULTS FROM A QUALITATIVE STUDY AND STAKEHOLDER CONSULTATION

Greenall, C.; Manning, F.; Bullock, L.; Hawarden, A.; Leyland, S.; Protheroe, J.; Paskins, Z.; Jinks, C.

Abstract

Objective: To identify inaccuracies, and contradictory statements in webbased patient information relating to osteoporosis and to produce recommendations for improvements.
Methods: Nine commonly accessed patient information websites
were selected from a range of different organisations. Textual descriptions of osteoporosis and drugs were extracted and an inductive
and deductive thematic analysis conducted using Leventhal’s common sense model of disease. Descriptive words/phrases were identified within themes and presented to a stakeholder group of clinicians and patients, including a health literacy expert and Royal
Osteoporosis Society representatives.
Results: Osteoporosis was described variably as fragile, spongy,
honeycomb, or weaker than average bones. Stakeholders felt the
term ‘fragile’ may invoke fear, comparing to ‘average’ was unhelpful and ‘weaker bones’ was preferable. Stakeholders identified i)
inconsistencies in the way symptoms were described, e.g., a statement ‘osteoporosis has no signs or symptoms’ followed by the
statement ‘signs of osteoporosis’, ii) a predominance of medical
language and iii) a focus on harms of treatment rather than benefits.
Claims medication could ‘prevent’ fracture were felt to be misleading, and optimal language about drug benefits were discussed as to
‘strengthen bone and lower chance of broken bones’.
Conclusion: Recommendations are to improve accuracy and consistency in patient information, using key terms our stakeholder
group prioritised, and address information gaps relating to treatment
benefits.

• Presentation Conference Type: Poster
• Conference Name: 34th International Conference on Pharmacoepidemiology & Therapeutic Risk Management, Prague Congress Centre
• Conference Location: Prague, Czech Republic
• Start Date: Aug 20, 2020
• End Date: Aug 22, 2020
• Deposit Date: Jun 27, 2023
• Publisher URL: https://link.springer.com/article/10.1007/s00198-020-05696-3