Haywood Academic Rheumatology Center
Haywood Academic Rheumatology Center
Paskins Z.,Keele University |
Paskins Z.,Haywood Academic Rheumatology Center |
Jinks C.,Keele University |
Mahmood W.,Keele University |
And 4 more authors.
Archives of Osteoporosis | Year: 2017
Summary: This is the first national study of public and patient research priorities in osteoporosis and fracture. We have identified new research areas of importance to members of the public, particularly ‘access to information from health professionals’. The findings are being incorporated into the research strategy of the National Osteoporosis Society. Purpose: This study aimed to prioritise, with patients and public members, research topics for the osteoporosis research agenda. Methods: An e-survey to identify topics for research was co-designed with patient representatives. A link to the e-survey was disseminated to supporters of the UK National Osteoporosis Society (NOS) in a monthly e-newsletter. Responders were asked to indicate their top priority for research across four topics (understanding and preventing osteoporosis, living with osteoporosis, treating osteoporosis and treating fractures) and their top three items within each topic. Descriptive statistics were used to describe demographics and item ranking. A latent class analysis was applied to identify a substantive number of clusters with different combinations of binary responses. Results: One thousand one hundred eighty-eight (7.4%) respondents completed the e-survey. The top three items overall were ‘Having easy access to advice and information from health professionals’ (63.8%), ‘Understanding further the safety and benefit of osteoporosis drug treatments’ (49.9%) and ‘Identifying the condition early by screening’ (49.2%). Latent class analysis revealed distinct clusters of responses within each topic including primary care management and self-management. Those without a history of prior fracture or aged under 70 were more likely to rate items within the cluster of self-management as important (21.0 vs 12.9 and 19.8 vs 13.3%, respectively). Conclusion: This is the first study of public research priorities in osteoporosis and has identified new research areas of importance to members of the public including access to information. The findings are being incorporated into the research strategy of the National Osteoporosis Society. © 2017, The Author(s).
Packham J.,Haywood Academic Rheumatology Center |
Packham J.,Keele University |
Arkell P.,Haywood Academic Rheumatology Center |
Sheeran T.,Cannock Hospital |
And 3 more authors.
Clinical Rheumatology | Year: 2017
The objective of the study was to measure patient attitudes and experience of information received during drug counselling for rheumatoid arthritis (RA) medications. This is a cross-sectional UK postal questionnaire study. Three RA patient groups—disease-modifying antirheumatic drugs (DMARDs) only, first anti-tumour necrosis factor (anti-TNF) and failed anti-TNF—were sent postal questionnaires. Data on patient history/demographics, drug counselling experience, knowledge of drug side effects, attitudes to vaccinations, cancer screening and blood borne virus testing was collected; 264/679 (39%) patients responded (median age 65 years, 66% female, median disease duration 15 years). Drug information from rheumatology nurses, rheumatology doctors and information leaflets was most useful. Thirty-eight percent of respondents felt reassured by information received, but 37% felt more worried. Forty percent of participants were aware of important drug side effects. Although 42–65% of patients understood they should temporarily halt anti-TNF therapy with concurrent infection, 75% of patients recalled continuing therapy despite infection. Thirteen percent believed that all vaccinations (including travel vaccinations) were safe while taking anti-TNF. Uptake of UK cancer screening programmes was between 87 and 94%, except prostate screening (47%). Most participants were not aware that they may need to discontinue their anti-TNF if they developed cancer. The majority of participants felt neutral/reassured by the prospect of viral hepatitis (95%) and HIV (91%) testing. Although drug counselling is a well-established part of clinical care, there is potential for further improvement to ensure that patients’ knowledge empowers them to act safely. Particular areas for improvement included the following: patients halting DMARDs/anti-TNF therapy during infections, knowledge regarding vaccinations and prostate cancer screening uptake. © 2017 The Author(s)