Survey about life with anticoagulants (GLobal Anticoagulation monitoring Survey – GLAS) report on german speaking participants

Recruitment took place over a period of 2 months (Sept.-Oct. 2009). Participants were recruited from advertisement placed on the German-speaking national sites of the International Self-Monitoring Association of Oral Anticoagulated Patients (ISMAAP, Geneva) website. Those who were interested were directed to a hyper link, which enabled them to access the survey questionnaire. The survey could then be completed on-line.

The survey questionnaire was organised into 4 parts. Parts 1 and 4 were to be completed by all respondents and contained questions about patient demographics, medical background, quality of life and knowledge of anticoagulation. Part 2 was to be completed only by those respondents whose INR levels were being tested at clinics/GP surgeries and were not self-monitoring. This part contained questions about education, experience of anticoagulation therapy and bridging treatment.

Part 3 was to be completed by those respondents who were self-monitoring (i.e. self-testing or self-managing by adjusting their own anticoagulation therapy). This part contained questions about education, experiences of anticoagulation therapy and of monitoring, quality assurance tests and bridging treatment.

The total number of respondents to the study was 368. However 4 were not currently taking anticoagulation therapy and were excluded from any analysis. In total, 364 respondents were currently taking anticoagulation therapy, of these 14 respondents were under GP/clinic care i.e. not self-testing or self-managing and 10 were self-testing only.

The results presented in this summary refer to the self-managing group only which made up 93% (340/364) of the respondents. The median amount of time spent on anticoagulation was 6 years (6 months and ranged up to 40 years).

Reason for treatment: Atrial Fibrillation (17%), Thrombophilia (18%), Heart Valve (60%) and other (5%).

Education about anticoagulation/self-monitoring: Ninety-five percent (324/336) of the participants reported attending a formal education training session about self-monitoring.

Experience of anticoagulation monitoring: Respondents had been self-managing for a median of 5 years (1 month to 22 years). Forty-five percent (152/338) had their INR results regularly checked by health profession a median of every 90 days. The respondents were self-testing their INR a median of every 7 days.

Respondents were also asked, using a scale of 1 to 10, how reassured they were when their INR was in-range 87 % (296/340) responded to this question. Median level 10.

Important reasons for self-monitoring: Respondents were asked to rate how important five of the most commonly reported reasons for wanting to self-monitor were to them. The most important factors were having more control over their INR (99%) and more knowledge about what was happening to their INR (98%).

Dose adjustments: When asked how they calculated their dose adjustments 88 % responded they did so from personal experience.

Knowledge of anticoagulation - Correct answers: Why anticoagulation therapy described? 97%; what happens when INR is below range? 96%; what happens when INR is above range? 95%; interaction with aspirin/ibuprofen etc: 65%.

C. Schaefer (ISMAAP, Geneva), E. Knight (AnticoagulationEurope, Bromley/UK), A. Bernardo, MD, Gais/ Switzerland. Evaluation done by Oxford University, Oxford/ UK

C.Schaefer (Nov. 2011)