A 69-year old man presented with a 2-week history of back discomfort and fevers, having had bioprosthetic aortic valve replacement (AVR) for prosthetic valve infective endocarditis (PVE) 4-months ago. Past medical history included coronary artery bypass grafting in 2008, bioprosthetic AVR with root replacement for ascending aortic dissection in 2010, diabetes mellitus, and chronic renal impairment. In June 2016, he was admitted with Streptococcus mitis bacteraemia treated with 6 weeks of ceftriaxone. Transoesophageal echocardiography was negative for endocarditis and root abscess. In November 2016, the patient was admitted with heart failure secondary to new severe aortic regurgitation. Transoesophageal echocardiography showed dehiscence of the anterior leaflet of aortic valve prosthesis. Blood cultures were negative. He was commenced on vancomycin prior to re-do AVR and discharged on lifelong amoxycillin.
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Abstract Background The linkage of primary care, hospital and other health registry data is a global goal, and a consent-based approach is often used. Understanding the attitudes of why participants take part is important, yet little is known about reasons for non-participation. The ATHENA COVID-19 feasibility study investigated: 1) health outcomes of people diagnosed with COVID-19 in Queensland, Australia through primary care health data linkage using consent, and 2) created a cohort of patients willing to be re-contacted in future to participate in clinical trials. This report describes the characteristics of participants declining to participate and reasons for non-consent. Methods Patients diagnosed with COVID-19 from January 1 st , 2020, to December 31 st , 2020, were invited to consent to having their primary healthcare data extracted from their GP into a Queensland Health database and linked to other data sets for ethically approved research. Patients were also asked to consent to future recontact for participation in clinical trials. Outcome measures were proportions of patients consenting to data extraction, permission to recontact, and reason for consent decline. Results Nine hundred and ninety-five participants were approached and 842(85%) reached a consent decision. 581(69%), 615(73%) and 629(75%) consented to data extraction, recontact, or both, respectively. Mean (range) age of consenters and non-consenters were 50.6(22-77) and 46.1(22-77) years, respectively. Adjusting for age, gender and remoteness, older participants were more likely to consent than younger (aOR 1.02, 95%CI 1.01 to 1.03). The least socio-economically disadvantaged were more likely to consent than the most disadvantaged (aOR 2.20, 95% 1.33 to 3.64). There was no difference in consent proportions regarding gender or living in more remote regions. The main reasons for non-consent were ‘not interested in research’ (37%), ‘concerns about privacy’ (15%), ‘not registered with a GP’ (8%) and ‘too busy/no time’ (7%). ‘No reason’ was given in 20%. Conclusion Younger participants and the more socio-economically deprived are more likely to non-consent to primary care data linkage. Lack of patient interest in research, time required to participate and privacy concerns, were the most common reasons cited for non-consent. Future health care data linkage studies addressing these issues may prove helpful.
Editor – We read with interest the review article by Jenkins et al exploring the question of thrombolysis in acute pulmonary embolism, particularly considering the subgroup of patients with right ventricular strain but no haemodynamic compromise ( Clin Med October 2009 pp 431–5). They
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