Knowledge, Attitudes, and Practices Among Patients with Systemic Lupus Erythematosus Toward Disease Management and Biologic Therapy

Figures & data

Table 1 Demographic Characteristics

Variables	N (%)
Gender
Male	42 (9.1)
Female	421 (90.9)
Age (years)
≤19	16 (3.5)
20–49	386 (83.4)
≥50	61 (13.2)
Marital status
Unmarried	132 (28.5)
Married	311 (67.2)
Divorced	19 (4.1)
Widowed	1 (0.2)
Parental status
Parent	295 (63.7)
Non-parent	168 (36.3)
Education
Middle school and below	119 (25.7)
High school and Technical secondary school	132 (28.5)
Junior college and University	197 (42.5)
Postgraduates and above	15 (3.2)
Per Capita Income (CNY)
< 2000	75 (16.2)
2000–5000	205 (44.3)
5000–10,000	124 (26.8)
10,000–20,000	30 (6.5)
>20,000	29 (6.3)
Treatment cost (CNY)
< 10,000	105 (22.7)
10,000–20,000	113 (24.4)
20,000–30,000	83 (17.9)
30,000–50,000	63 (13.6)
Over 50,000	76 (16.4)
Unsure	23 (5.0)
Medical insurance (multiple choices)
Basic medical insurance for urban employees	220 (47.5)
New Cooperative Medical Insurance	159 (34.3)
Basic medical insurance for urban residents	90 (19.4)
Medical insurance for retired cadres	0
Commercial insurance	19 (4.1)
No insurance	8 (1.7)
Family support
Has family support	424 (91.6)
No family support	39 (8.4)
Time since SLE diagnosis (years)
<1	64 (13.8)
1–5	148 (32.0)
5–10	104 (22.5)
>10	147 (31.7)
SLE related complications: (multiple choices)
Renal complications	140 (30.2)
Cardiac complications	59 (12.7)
Pulmonary complications	60 (13.0)
Hematological complications	119 (24.2)
Neurological complications	96 (20.7)
Mental system complications	50 (10.8)
Skin damage	130 (28.1)
Joint damage	120 (25.9)
Other	61 (13.2)
None of the above complications	92 (19.9)

Table 2 KAP Scores

Variables	Knowledge Scores		Attitude Scores		Practice Scores
	Mean ± SD	P	Mean ± SD	P	Mean ± SD	P
Total Score	8.52 ± 2.36		39.40 ± 3.38		27.10 ± 6.29
Gender		0.507		0.13		0.735
Male	8.29 ± 2.73		38.64 ± 3.36		26.79 ± 6.76
Female	8.54 ± 2.32		39.47 ± 3.37		27.13 ± 6.25
Age (years)		0.033		0.088		0.181
≤19	8.44 ± 2.76		38.13 ± 3.63		29.56 ± 3.93
20–49	8.63 ± 2.33		39.54 ± 3.43		27.12 ± 6.25
≥50	7.79 ± 2.33		38.80 ± 2.89		26.31 ± 6.94
Marital status		<0.001		0.749		0.42
Unmarried	9.03 ± 2.28		39.33 ± 3.40		27.67 ± 5.56
Married	8.34 ± 2.34		39.45 ± 3.34		26.87 ± 6.46
Divorced	8.16 ± 2.14		39.16 ± 3.98		26.58 ± 8.06
Widowed	1		36		34
Parental status		0.012		0.382		0.17
Parent	8.31 ± 2.29		39.29 ± 3.34		26.80 ± 6.66
Non-parent	8.88 ± 2.43		39.58 ± 3.44		27.63 ± 5.57
Education		<0.001		0.004		0.005
Middle school and below	7.88 ± 2.33		38.67 ± 3.27		26.01 ± 7.00
High school and Technical secondary school	8.44 ± 2.35		39.18 ± 3.25		26.47 ± 6.29
Junior College and University	8.80 ± 2.34		39.84 ± 3.46		27.92 ± 5.57
Postgraduates and above	10.47 ± 0.64		41.13 ± 2.95		30.47 ± 7.16
Per Capita Income (CNY)		0.42		0.703		0.243
< 2000	8.17 ± 2.31		39.23 ± 3.64		25.83 ± 7.52
2000–5000	8.68 ± 2.25		39.21 ± 3.01		27.36 ± 6.04
5000–10,000	8.42 ± 2.43		39.64 ± 3.60		26.90 ± 5.85
10,000–20,000	8.27 ± 3.02		39.60 ± 3.37		28.40 ± 5.84
>20,000	8.90 ± 2.27		39.90 ± 4.19		28.03 ± 6.61
Treatment cost (CNY)		0.001		0.001		<0.001
< 10,000	7.88 ± 2.53		39.79 ± 3.26		24.65 ± 5.97
10,000–20,000	8.33 ± 2.50		39.77 ± 3.31		26.61 ± 7.08
20,000–30,000	8.69 ± 2.39		39.42 ± 3.31		27.12 ± 5.93
30,000–50,000	9.40 ± 1.86		39.97 ± 3.10		29.32 ± 4.92
Over 50,000	8.55 ± 2.08		37.83 ± 3.24		29.24 ± 5.31
Unsure	9.22 ± 1.98		39.26 ± 4.39		27.48 ± 7.17
Medical insurance		0.665		0.986		0.359
Insured	8.51 ± 2.37		39.40 ± 3.39		27.06 ± 6.30
Uninsured	8.88 ± 1.46		39.37 ± 2.83		29.13 ± 5.36
Family support		0.473		0.035		0.1
Has family support	8.54 ± 2.35		39.50 ± 3.39		27.25 ± 6.31
No family support	8.26 ± 2.49		38.31 ± 3.12		25.51 ± 5.86
Time since SLE diagnosis (years)		0.622		0.045		0.076
<1	8.23 ± 3.09		38.53 ± 3.26		28.59 ± 6.97
1–5	8.43 ± 2.33		39.17 ± 3.60		27.50 ± 5.91
5–10	8.65 ± 2.12		39.88 ± 3.04		26.70 ± 6.68
>10	8.63 ± 2.19		39.65 ± 3.36		26.33 ± 5.97
Number of SLE-associated complications		0.006		0.06		0.04
Without other complications	7.77 ± 2.81		39.99 ± 3.79		25.72 ± 6.80
1–2 complications	8.72 ± 2.24		39.48 ± 3.26		27.06 ± 6.45
3–4 complications	8.55 ± 2.24		38.85 ± 3.47		28.24 ± 5.55
5 and more complications	8.97 ± 1.73		38.56 ± 2.43		28.15 ± 4.76

Table 3 Knowledge

	Correctness
	N (%)
K1. Systemic lupus erythematosus (SLE) is a systemic autoimmune disease that affects multiple organs and can result in severe and potentially fatal outcomes. (True)	429 (92.7)
K2. The etiology of SLE is multifactorial and involves a complex interplay among genetics, hormones, and environmental factors. (True)	415 (89.6)
K3. Early personalized treatment strategies for SLE have demonstrated potential in delaying disease progression and improving patient outcomes. (True)	394 (85.1)
K4. SLE patients may experience various complications that affect the lungs, cardiovascular system, and nervous system. (True)	415 (89.6)
K5. Infection remains the primary cause of mortality in patients with SLE. (True)	244 (52.7)
K6. Current pharmacological interventions for SLE encompass glucocorticoids, anti-inflammatory drugs, immunosuppressants, and biological agents. (True)	420 (90.7)
K7. Combining biological agents with glucocorticoids and other drugs is a common treatment approach for SLE. (True)	338 (73.0)
K8. The administration of biological agents for SLE treatment may be accompanied by adverse effects, including gastrointestinal discomfort, diarrhea, infection, headache, and others. (True)	273 (59.0)
K9. Women of reproductive age with SLE require standard care for reproductive health and do not necessitate additional attention. (False)	348 (75.2)
K10. Biological agents provide novel avenues for the treatment of SLE, offering potential advantages over conventional hormone or immunosuppressive therapies in reducing long-term side effects. (True)	335 (72.4)
K11. Biological agents may exhibit particular efficacy in cases of refractory or relapsed SLE, potentially enabling a reduction in hormone dosages. (True)	332 (71.7)

Note: The correct answer to each question is provided within parentheses at the end of the respective question.

Table 4 Attitudes

	Strongly Agree N (%)	Agree	Neutral	Disagree	Strongly Disagree N (%)
		N (%)	N (%)	N (%)
A1. It is important to actively learn about SLE-related knowledge, such as disease characteristics, treatment methods, and adverse drug reactions.	229 (49.5)	205 (44.3)	29 (6.3)	0	0
A2. It causes anxiety to individuals due to the family or financial burden caused by SLE.	147 (31.7)	222 (47.9)	72 (15.6)	18 (3.9)	4 (0.9)
A3. It is crucial to receive early treatment for SLE in the early stages of the disease.	304 (65.7)	141 (30.5)	17 (3.7)	1 (0.2)	0
A4. It induces anxiety regarding the use of hormones.	128 (27.6)	196 (42.3)	115 (24.8)	21 (4.5)	3 (0.6)
A5. It leads to anxiety about reproductive issues caused by the disease.	107 (23.1)	203 (43.8)	115 (24.8)	35 (7.6)	3 (0.6)
A6. It is important for SLE patients to focus on their own health conditions, including the disease itself, complications, and infections, and to promptly inform the doctor if any abnormalities are detected.	280 (60.5)	167 (36.1)	16 (3.5)	0	0
A7. It is crucial for female SLE patients to undergo pre-pregnancy consultations and multidisciplinary assessments involving obstetrics and gynecology.	271 (58.5)	167 (36.1)	24 (5.2)	0	1 (0.2)
A8. It is highly important for SLE patients to maintain good dietary and exercise habits and minimize prolonged exposure to ultraviolet radiation.	278 (60.0)	166 (35.9)	16 (3.5)	2 (0.4)	1 (0.2)
A9. It is recognized that biologics play a role in recurrent or refractory SLE.	124 (26.8)	230 (49.7)	104 (22.5)	5 (1.1)	0
A10. If your attending physician chooses a combination of biologics as a treatment plan, you have full trust in the treatment approach taken by the doctor.	141 (30.5)	567 (57.7)	52 (11.2)	3 (0.6)	0
A11. Among the adverse drug reactions, it causes anxiety regarding potential adverse reactions such as nausea, vomiting, and infusion reactions caused by biologics and other medications.	76 (16.4)	200 (43.2)	166 (35.9)	20 (4.3)	1 (0.2)

Table 5 Practices

	Always	Often	Sometimes	Occasionally	Never
	N (%)	N (%)	N (%)	N (%)	N (%)
P1. The frequency at which you actively acquire knowledge about SLE and biologics through various channels such as books, the internet, newspapers, etc.	48 (10.4)	108 (23.3)	126 (27.2)	123 (26.6)	58 (12.5)
P2. The frequency with which you monitor the progression of your own disease and assess the frequency of improvement or deterioration in your condition.	99 (21.4)	141 (30.5)	102 (22.0)	85 (18.4)	36 (7.8)
P3. The frequency at which you pay attention to the occurrence of adverse reactions after receiving hormone therapy, biologics, and other medications.	75 (16.2)	123 (26.6)	122 (26.3)	96 (20.7)	47 (10.2)
P4. The frequency at which you implement measures such as dietary control and appropriate exercise to improve your physical condition.	88 (19.0)	135 (29.2)	121 (26.1)	93 (20.1)	26 (5.6)
P5. The frequency at which you seek psychological support, such as confiding in family and friends or participating in psychological counseling,	41 (8.9)	79 (17.1)	112 (24.2)	125 (27.0)	106 (22.9)
P6. The frequency at which you have regular follow-up visits or appointments to control the progression of your condition.	142 (30.7)	107 (23.1)	77 (16.6)	116 (25.1)	21 (4.5)
P7. The frequency at which you consciously engage in skincare for SLE or take proactive measures to avoid prolonged exposure to ultraviolet radiation.	140 (30.2)	137 (29.6)	92 (19.9)	66 (14.3)	28 (6.0)
P8. The frequency at which you adhere to medical advice regarding the timely and proper use of medications.	318 (68.7)	86 (18.6)	32 (6.9)	19 (4.1)	8 (1.7)

Figure 1 The KAP path analysis.

Data Sharing Statement

All data generated or analysed during this study are included in this published article.