Doctors and Patients Don’t Agree
There is substantial evidence that rheumatoid disease imposes a significant burden on a patient’s health-related quality of life and work participation. Conversely, RD treatments are associated with significant improvements in patient-reported outcomes. So why the difference?
Many RD people indicate that doctors tend to underestimate their symptoms or not take them seriously enough. We need clinicians to be driven by blood chemistry analysis to control damage and pain but the other features associated with fatigue, brain fog, poor sleep and loss of strength to name a few are not part of blood analysis. Clinicians often do not actively communicate with their patients about their disease, its progression and engage in shared decision making about treatment plans.
One study compared over a thousand RD patients with over two thousand healthy volunteers and measured the impact on ‘quality of life’ outcomes. Patients with RD had poorer outcomes with the largest impact being physical function, body pain and general lack of well being.
Clinicians are not all to blame as patient adherence to therapies ranges from about 30% to 80%. Some people just will not follow the directions given to them for very long. There are big differences in behaviour of those newly diagnosed versus those who have been living with the disease for a while. Patient education and adherence management may well improve the situation here.
The difference in perceived communication between patients and clinicians is not simple to address because the current system only supports rapid consultation based on cost. Good and sympathetic communication is essential. At Dragon Claw we suggest:
- Develop your own medical record (refer Health Record Model under Carer Central);
- Over a twenty day period observe and record information about your quality of life or lack of it;
- Take a carer with you to your regular sessions with the rheumatologist or GP and discuss the meeting outcomes with them over coffee;
- Investigate the Self Help section of Dragon Claw; and
- See our video (available in June 2017) – My Health Organiser.