Satisfaction with control of systemic lupus erythematosus and lupus nephritis: physician and patient perspectives

Figures & data

Table 1 Demographic and clinical characteristics of NNSLE and LN patient cohorts

Characteristic	Patients with NNSLE n=168	Patients with LN n=206	P-value NNSLE vs LN
Mean (SD) age, years	43.5 (14.9)	39.4 (13.1)	0.005
Females, n (%)	160 (95.2)	182 (88.8)a	0.037
Ethnicity, n (%)	n=167	n=205
White	101 (60.5)	85 (41.5)	<0.001
Black/Afro-Caribbean	37 (22.2)	70 (34.1)	0.012
Hispanic/Latino	21 (12.6)	28 (13.7)	0.878
Chinese	3 (1.8)	10 (4.9)	0.156
Asian subcontinent	2 (1.2)	7 (3.4)	0.195
Asian other	1 (0.6)	3 (1.5)	0.631
Other	2 (1.2)	2 (1.0)	1.000
Employment status,b n (%)	n=167	n=206
Full time	70 (41.9)	69 (33.5)	0.107
Part time	20 (12.0)	27 (13.1)	0.757
Self-employed	3 (1.8)	2 (1.0)	0.660
Unemployed	21 (12.6)	53 (25.7)	0.002
Student	12 (7.2)	9 (4.4)	0.265
Current smoker, n (%)	22/161 (13.7)	15/186 (8.1)	0.116
Mean (SD) time since diagnosis, years	5.9 (7.0)	5.6 (6.5)	0.702
Current physician-reported lupus disease severity, n (%)			<0.001
Mild	126 (75.0)	102 (49.5)
Moderate	35 (20.8)	82 (39.8)
Severe	7 (4.2)	22 (10.7)
Current patient-reported lupus disease severity, n (%)	n=111	n=120	0.008
Mild	75 (67.6)	62 (51.7)
Moderate	33 (29.7)	47 (39.2)
Severe	3 (2.7)	11 (9.2)
Current physician-reported symptoms, n (%)	n=154	n=197
Joint tenderness	56 (36.4)	65 (33.0)	0.572
Joint stiffness	58 (37.7)	85 (43.1)	0.325
Joint swelling	31 (20.1)	43 (21.8)	0.792
Pain on movement	35 (22.7)	46 (23.4)	0.899
Pain at rest	26 (16.9)	20 (10.2)	0.079
Chronic pain	13 (8.4)	20 (10.2)	0.713
Fibromyalgia	17 (11.0)	10 (5.1)	0.044
Osteoarthritis	18 (11.7)	15 (7.6)	0.203
Malar or butterfly rash	19 (12.3)	33 (16.1)	0.290
Discoid rash	11 (7.1)	22 (11.2)	0.268
High blood pressure	21 (13.6)	58 (29.4)	0.001
Depression	27 (17.5)	39 (19.8)	0.680
Anxiety	28 (18.2)	32 (16.2)	0.670
Kidney dysfunction/impairment	4 (2.6)	121 (61.4)	<0.001
Headaches/migraine	12 (7.8)	20 (10.2)	0.576
Fatigue	56 (36.4)	63 (32.0)	0.427
Hair loss	17 (11.0)	23 (11.7)	0.868
Photosensitivity	18 (11.7)	34 (17.3)	0.173
Anemia	15 (9.7)	57 (28.9)	<0.001
Thrombocytopenia	10 (6.5)	20 (10.2)	0.253
Leukopenia	17 (11.0)	21 (10.7)	1.000
Sjögren’s syndrome	18 (11.7)	8 (4.1)	0.008
Current medications, n (%)	n=168	n=203
Antimalarial	116 (69.0)	85 (41.9)	<0.001
Immunosuppressant	65 (38.7)	135 (66.5)	<0.001
Biologic DMARD	1 (0.6)	3 (1.5)	0.630
Traditional NSAID	48 (28.6)	34 (16.7)	0.008
COX-2 inhibitor	15 (8.9)	24 (11.8)	0.399
Corticosteroid	90 (53.6)	155 (76.4)	<0.001
Otherc	29 (17.3)	46 (22.7)	NS
Currently in physician-reported remission, n (%)	93/166 (56.0)	123/203 (60.6)	0.397
Currently in disease flare, n (%)
Physician-reported	20/168 (11.9)	20/204 (9.8)	0.614
Patient-reported	17/106 (16.0)	10/115 (8.7)	0.105

Notes:

a N=205,

b Categories not shown: unemployed due to lupus, retired, and homemaker,

c Included prescriptions for 14 other classes of medication. Bold indicates that the P-value is statistically significant.

Abbreviations: COX, cyclooxygenase; DMARD, disease-modifying antirheumatic drug; LN, lupus nephritis; NNSLE, non-nephritis systemic lupus erythematosus; NS, nonsignificant; NSAID, nonsteroidal anti-inflammatory drug.

Table 2 Satisfaction levels for all patients and physicians (NNSLE + LN)

	Satisfied n (%)	Not satisfied (best achieved)a n (%)	Not satisfied (could be better)b n (%)	Total N
Patient-reported satisfaction	149 (70.3)	51 (24.1)	12 (5.7)	212
Physician-reported satisfaction	284 (75.9)	51 (13.6)	39 (10.4)	374

Notes:

a Not satisfied, but I believe this is the best that can be realistically achieved,

b Not satisfied, and I believe better control can be achieved.

Abbreviations: LN, lupus nephritis; NNSLE, non-nephritis systemic lupus erythematosus.

Figure 1 Patient-reported satisfaction in relation to the presence of lupus symptoms in ≥10% of patients with NNSLE (A) and LN (B).

Notes: *P<0.05; **P<0.001, ^aNot satisfied, and I believe better control can be achieved, ^bNot satisfied, but I believe this is the best that can be realistically achieved.
Abbreviations: LN, lupus nephritis; NNSLE, non-nephritis systemic lupus erythematosus.

Table 3 Associations between patient-reported satisfaction and NNSLE and LN cohort characteristics

Characteristic	Patients with NNSLE			P-value	Patients with LN			P-value
	Satisfied n=75	Not satisfied(best achieved)a n=17	Not satisfied (could be better)b n=7		Satisfied n=74	Not satisfied(best achieved)a n=34	Not satisfied (could be better)b n=5
Mean (SD) age, years	40.9 (14.8)	44.6 (15.6)	45.4 (15.7)	0.524	38.7 (13.1)	43.2 (12.7)	25.6 (8.1)	0.013
Females, %	94.7	100	85.7	0.339	87.7	94.1	20.0	<0.001
Mean (SD) time since diagnosis, years	4.3 (4.4)	7.1 (6.9)	3.7 (6.1)	0.114	5.7 (6.2)	7.0 (7.7)	4.3 (4.2)	0.549
Current physician-reportedlupus severity, %				0.111				<0.001
Mild	80.0	70.6	42.9		59.5	35.3	0.0
Moderate	16.0	29.4	57.1		36.5	35.3	40.0
Severe	4.0	0	0		4.1	29.4	60.0
Current patient-reported lupus severity, %				0.004				<0.001
Mild	73.3	41.2	28.6		63.5	30.3	20.0
Moderate	25.3	52.9	57.1		33.8	51.5	0.0
Severe	1.3	5.9	14.3		2.7	18.2	80.0
Currently in physician-reported remission, %	60.8	52.9	0	0.008	65.8	50.0	40.0	0.197
Currently in disease flare, %
Physician-reported	10.7	5.9	42.9	0.031	12.3	8.8	40.0	0.144
Patient-reported	11.0	23.5	57.1	0.005	7.0	12.5	40.0	0.055

Notes:

a Not satisfied, but I believe this is the best that can be realistically achieved,

b Not satisfied, and I believe better control can be achieved. Bold indicates that the P-value is statistically significant.

Abbreviations: LN, lupus nephritis; NNSLE, non-nephritis systemic lupus erythematosus; SD, standard deviation.

Table 4 Associations between physician-reported satisfaction and NNSLE and LN cohort characteristics

Characteristic	Patients with NNSLE			P-value	Patients with LN			P-value
	Satisfied n=132	Not satisfied(best achieved)a n=15	Not satisfied (could be better)b =21		Satisfied n=152	Not satisfied(best achieved)a n=36	Not satisfied (could be better)b n=18
Mean (SD) age, years	44.0 (15.4)	43.5 (11.7)	40.5 (14.3)	0.608	39.3 (13.5)	41.7 (10.6)	35.2 (13.2)	0.237
Females, %	94.7	100	95.2	0.659	91.4	86.1	72.2	0.044
Mean (SD) time since diagnosis, years	6.3 (7.5)	5.7 (5.3)	3.9 (4.0)	0.354	5.4 (6.4)	6.1 (5.9)	6.8 (8.1)	0.603
Current physician-reportedlupus severity, %				<0.001				<0.001
Mild	87.9	26.7	28.6		58.6	33.3	5.6
Moderate	10.6	60.0	57.1		35.5	52.8	50.0
Severe	1.5	13.3	14.3		5.9	13.9	44.4
Current patient-reported lupus severity, %				0.002				<0.001
Mild	74.2	50.0	25.0		59.8	42.9	8.3
Moderate	23.7	50.0	66.7		37.9	42.9	41.7
Severe	2.2	0	8.3		2.3	14.3	50.0
Currently in physician- reported remission, %	68.5	26.7	0	<0.001	69.3	45.7	16.7	<0.001
Currently in disease flare, %
Physician-reported	6.1	33.3	33.3	<0.001	5.3	11.4	44.4	<0.001
Patient-reported	9.0	80.0	41.7	<0.001	4.8	5.0	41.7	<0.001

Notes:

a Not satisfied, but I believe this is the best that can be realistically achieved,

b Not satisfied, and I believe better control can be achieved. Bold indicates that the P-value is statistically significant.

Abbreviations: LN, lupus nephritis; NNSLE, non-nephritis systemic lupus erythematosus; SD, standard deviation.

Figure 2 Physician-reported satisfaction in relation to the presence of lupus symptoms in ≥10% of patients with NNSLE (A) and LN (B).

Notes: *P<0.05; **P<0.001. ^aNot satisfied, and I believe better control can be achieved, ^bNot satisfied, but I believe this is the best that can be realistically achieved.
Abbreviations: LN, lupus nephritis; NNSLE, non-nephritis systemic lupus erythematosus.