It may sound like a peculiar topic to present to professionals, but this one topic may actually be more useful to you than some others are. What behaviors compromise treatment or suggest to patients that they may not be getting adequate care? In what areas might you have been trained inadequately, yet may not even be aware of it?
Two problems plague people who are diagnosed with Rheumatoid Disease (RD):
- Many disease effects are visibly subtle or not visible at all.
- The disease is drastically heterogeneous.
The result has been persistent confusion about how RD affects patients and the how they experience it. People with Rheumatoid Disease (PRD) almost unanimously state that their doctors do not truly understand what RD is really like or have a tendency to dismiss symptoms. It is crucial to bridge this information gap, especially with regard to the systemic affects of RD.
Systemic issues that are shown to potentially contribute to the death of persons with Rheumatoid Disease (PRD) are underreported, which has led to the recommendation of an annual review form that includes systemic aspects of the disease. Even while research has almost invariably documented what PRD experience and describe with the disease, that information is only slowly integrated into clinical practice. Attending to patients’ medical “complaints” gives a doctor an edge in furthering the care he/she is able to provide.
The American College of Rheumatology (ACR) has suggested there is “considerable room for improvement in the quality of rheumatic care delivered to the US population and provide a clear call to improve health care for patients with arthritis and allied conditions.”[3, 4] Suboptimal care in Rheumatoid Arthritis has been documented by several studies that suggest “at worst, significant deficits in quality of care for RA exist in the healthcare system, and that at best, more systematic assessment of quality in this condition is warranted.”
Be aware that the complete experience of PRD may not be reflected accurately in messages you received in medical education or in communications from pharmaceutical companies. Patients say they fantasize about their doctors living a week with RD in order to grasp it, but most likely you will never experience the sudden and sharp invisible pain and disability of RD. Yet, you can become expert it by listening to what patients tell you, and accepting that information at face value. Although it is difficult to imagine yourself as a PRD, perhaps you can imagine a loved one, such as your daughter, mother, or brother being suddenly confronted with dramatic, but visibly imperceptible symptoms characteristic of RD. Think of how you would want them to be treated medically; and if you treat your actual patients that way, you are following the Golden Rule of Medicine.
Doctors providing care for PRD should avoid the following:
1. Failing to be aware of patient’s symptoms. Dismissing symptoms as imaginary or unimportant because they were not emphasized in your training.
2. Relying on the common “gestalt” method of evaluating disease activity. A doctor’s impression of disease activity is dependably lower than a patient’s actual experience. Do not fail to measure. Systemic problems, and variable invisible musculoskeletal symptoms cannot be judged by a glance at the top of the hands. It is essential that an interactive examination takes place, in which patients are able to describe problems occurring in specific joints.
3. Failing to communicate with patients about treatment plans, prescribed tests, or medications. Studies show patients want to know and are able to understand information related to their disease and treatment. Most patients are reading research or discussing disease-related matters with peers (in person or online).
4. Failing to sufficiently document patient’s symptoms in medical records. Symptoms reported by PRD are often related to serious systemic disease aspects, so accurate documentation could lead to appropriate treatment that could save their lives.
5. Mocking, insulting, or otherwise commenting inappropriately about anything related to your patient, or making disparaging marks about patients to office staff. Although it is common, such behavior is immoral and violates U.S. HIPAA law.
6. Relying on outdated information about Rheumatoid Disease. New rheumatologists are still entering practice trained in outdated approaches such as diagnosing RD by the appearance of the MCP joints or assessing disease activity by glancing at the top of the hands. Research confirms bone edema, tenosynovitis when patients experience joint symptoms, but swelling is not conspicuous. See facts and information on RD.
7. Squeezing or twisting a patient’s joints more harshly than necessary. It is not necessary to hurt a patient in order to learn whether her joints are tender, painful, stiff, or have a limited range of motion?
8. Failing to investigate extra-articular disease or refer patients for applicable evaluations by other specialists. Ignoring systemic disease symptoms is no longer the norm with diabetes, and must not be allowed to continue with RD. Currently, PRD receive less adequate preventive care than other patients, including those with other chronic diseases.[7, 8]
MORE INFORMATION on what NOT to do
- Rheumatoid Arthritis Doctors
- Rheumatoid Arthritis Doctors’ Interviews
- Medical Records Tip for Your Rheumatoid Arthritis History: Read the Doctors’ notes
- Disparity Between Rheumatoid Arthritis Patients & Doctors over Disease Activity
- Bridget Duffy of Cleveland Clinic video – she became a patient in the facility she runs
- The Appointment with Doctor Perv
- Do Doctors Surprise Patients with Surgical Procedures?
- My Doctor Fired Me (click here to read the 2nd opinion: Credibility is Everything)
- Video: Good Rheumatoid Arthritis Doctors Treat Patients
- A Doctor-Patient Covenant: Medicine’s Future Found In Its Past
- Trust and Transparency with Disease Activity, Decisions, and Doctors
- Do Doctors Need to Love Patients?
- The Path of Mercy in Medicine: A Tale of Two Doctors
1 Kelly C, Hamilton J. What kills patients with rheumatoid arthritis? (Oxford) Rheumatology [Internet]. 2007 [cited 2013 Jun 5];46 (2): 183-184. Available from: http://rheumatology.oxfordjournals.org/content/46/2/183.full
2 Bombardier C. Translation gaps in Outcomes Science. Ann Rheum Dis [Internet]. 2013 Jun [cited 2013 Aug 21];72(Suppls3):7
3 Saag KG, Yazdany J, Alexander C, Caplan L, Coblyn J, Desai SP, Harrington T Jr, Liu J, McNiff K, Newman E, et al. Defining quality of care in rheumatology: The American College of Rheumatology white paper on quality measurement. Arthrit Car Res [Internet]. 2011 Jan [cited 2013 Aug 21];63(1):2-9. Available from: http://onlinelibrary.wiley.com/doi/10.1002/acr.20369/full
4 Yazdany J, MacLean CH. Quality of care in the rheumatic diseases: current status and future directions. Curr Opin Rheumatol. 2008 Mar [cited Aug 21];20(2):159-66
5 Young K. Dear Bridget Duffy from a rheumatoid arthritis patient. Rheumatoid Arthritis Warrior. 2010 Jan 7 [cited 2013 Aug 19]. Available from: https://www.rawarrior.com/bridget-duffy-from-rheumatoid-arthritis-patient/
6 Kahn KL, MacLean CH, Liu H, Rubenstein LZ, Wong AL, Harker JO, Chen WP, Fitzpatrick DM, Bulpitt KJ, Traina SB, Mittman BS, Hahn BH, Paulus HE. Application of explicit process of care measurement to rheumatoid arthritis: Moving from evidence to practice. Arthritis Rheum [Internet. 2006 Dec 15 [cited 2013 Aug 21];55(6):884-91. Available: from: http://www.rheumatology.org/Practice/Clinical/Quality/Rheumatoid_Arthritis_Quality_Indicators/
7 Kremers HM, Bidaut-Russell M, Scott CG, Reinalda MS, Zinsmeister AR, Gabriel SE. Preventive medical services among patients with rheumatoid arthritis. J Rheumatol. 2003 Sep [PDF accessed 2010 Aug 19 and Abstract accessed 2013 Feb 20];30(9):1940-1947. Available from: http://www.jrheum.org/content/30/9/1940.abstract
8 Desai SS, Myles JD, Kaplan MJ. Suboptimal cardiovascular risk factor identification and management in patients with rheumatoid arthritis: a cohort analysis. Ann rheum dis. 2012 Dec [cited 2013 Feb 20]; 14:R270. Available from: http://www.ncbi.nlm.nih.gov/pubmed/19773290