Session Information
Date: Monday, November 6, 2017
Session Title: Systemic Lupus Erythematosus – Clinical Aspects and Treatment Poster II: Damage and Comorbidities
Session Type: ACR Poster Session B
Session Time: 9:00AM-11:00AM
Background/Purpose: Long-term SLE treatment is often complex due to changing clinical manifestations, disease fluctuation, and frequent medication changes. Treatment can be daunting especially to the 25-60% of SLE patients who have cognitive and neuropsychiatric deficits. Patients cannot collaborate in making effective and shared and informed choices with physicians without understanding their own baseline health status and treatment options. The goal of this project was to identify the level of SLE patients’ comprehension of their medication regimens and disease outcomes. To our knowledge, a disease comprehension questionnaire has never been used in SLE patients.
Methods: Patients > 18 years were recruited from The Ohio State University Lupus Vasculitis Glomerulonephritis (LVG) clinic. After IRB approval, patient demographics and medical history was collected. A 25 item true/false disease questionnaire (Tables 2) was developed, and a small focus group of SLE patients helped ensure feasibility, understanding and appropriate literacy. The comprehension questionnaire was administered to SLE patients in clinic during routine visits.
Results: 32 SLE patients completed the questionnaire. Patient characteristics are summarized in Table 1. Table 2 shows the frequency of incorrect answers. Approximately 33% of the patients did not know that heart disease was associated with SLE. Over 15% of patients did not know that SLE affected bone health and over 25% of the patients did not recognize the side of effects of prednisone. On the other hand, 100% patients recognized SLE disease manifestations and management vary.
Conclusion: One-third of SLE patients did not recognize the burden of heart or metabolic bone disease associated with the diagnosis of SLE. In addition, SLE patients did not understand the myriad possible side effects of prednisone, one of the most common drugs prescribed for SLE. Patients appeared to not appreciate the gravity of disease comorbidities and medication side affects, however, they did appreciate the heterogeneity of the disease and its treatment. Similar studies with larger samples are needed to develop educational processes that ensure patient understanding leading to improved shared decision making.
|
Table 1 Patient Demographics |
|
|
Age, mean (years) |
41 |
|
Gender % (female) |
92% |
|
Race |
61% white, 39% nonwhite |
|
Highest Education Completed |
62% < / =HS, 38% > HS |
|
Annual Household Income, median ($) |
$32,500 |
|
HS (High School) |
|
|
Table 2: True/ False Comprehension Questions (correct answer indicated immediately after each one) |
% Incorrect |
|
All lupus patients should be on hydroxychloroquine (or similar medication) unless your doctor tells you to stop (True) |
34.4 |
|
Heart disease is the number one cause of death of lupus patients (True) |
34.4 |
|
All medications have some side effects (True) |
34.4 |
|
Lupus does not increase the risk of heart disease (False) |
21.9 |
|
Active lupus will not affect you or the baby during pregnancy (False) |
21.9 |
|
Lupus can cause weakening of your bones (True) |
21.9 |
|
If you have lupus and you smoke, its no worse for you then if you have lupus and you don’t smoke (False) |
15.6 |
|
Most patients need multiple medications to control their disease (True) |
15.6 |
|
Controlling your lupus decreases your risk of disability (True) |
12.5 |
|
Prednisone when stopped abruptly, can cause life threatening consequences (True) |
12.5 |
|
If you know someone who has lupus, you can expect to have the same things happen to you (False) |
9.4 |
|
Prednisone is not a steroid (False) |
6.3 |
|
Exercise can improve your bone and heart health (True) |
6.3 |
|
All patients with lupus will develop kidney disease (False) |
6.3 |
|
Most people with lupus, when on the correct medication, can live a life similar to someone who does not have lupus (True) |
6.3 |
|
Sun exposure does not increase your risk for lupus flares (False) |
3.1 |
|
It is not important to monitor blood work regularly inpatients with lupus to see if their disease is active or not (False) |
3.1 |
|
If your doctor suggests a medication and the medication does not work for you, then your doctor has failed you (False) |
0 |
|
Lupus can never be cured, but can be managed (True) |
0 |
|
Starting a new medication is a bad idea because you will definitely get the side effects (False) |
0 |
|
Because your doctor prescribed a medication for you, it is guaranteed to work for you (False) |
0 |
|
True/False Questions about the medication: Prednisone (correct answer indicated immediately after each one)
|
% Incorrect |
|
This medication can cause worsening acne (True) |
43.8 |
|
This medication does not affect your sugars (False) |
40.6 |
|
This medication can cause easy bruising (True) |
34.4 |
|
This medication does not cause weight gain (False) |
31.3 |
|
This medication can causes changes to your hair (True) |
25.0 |
|
This medication does not disrupt your sleep (False) |
18.8 |
To cite this abstract in AMA style:
Meara A, Meara A, Yedimenko J, Yedimenko J, Steigelman H, Ardoin SP, Peters E. “Do You Know What I Mean?” a Tool to Understand What Lupus Patients Comprehend [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 10). https://acrabstracts.org/abstract/do-you-know-what-i-mean-a-tool-to-understand-what-lupus-patients-comprehend/. Accessed September 27, 2020.« Back to 2017 ACR/ARHP Annual Meeting
ACR Meeting Abstracts - https://acrabstracts.org/abstract/do-you-know-what-i-mean-a-tool-to-understand-what-lupus-patients-comprehend/