Barriers to access to care reported by women living with HIV across 27 countries

Figures & data

Table 1. Geographical disposition of patients.

Region	County	Number of sites	Number of patients enrolled
Global (total)		114	1931
WEC (total)		74	760
	Austria	3	18
	Canada	6	72
	France	8	82
	Germany	4	70
	Greece	4	40
	Ireland	1	20
	Israel	3	37
	Italy	6	99
	Netherlands	1	25
	Norway	3	21
	Portugal	6	93
	Spain	16	87
	Sweden	4	25
	Switzerland	2	27
	UK	7	44
CEE (total)		20	532
	Czech Republic	3	20
	Estonia	3	99
	Romania	8	200
	Russia	5	171
	Slovenia	1	42
LA (total)		17	519
	Argentina	3	101
	Brazil	1	90
	Chile	1	50
	Columbia	6	84
	Mexico	2	115
	Venezuela	4	79
Asia (total)		3	120
	China	3	120

Table 2. Measures of barriers to accessing health care.

Measure	Definition	Range of possible scores
Prevalence of barriers to accessing health care	Proportion of women living with HIV responding in each of the 4 response categories (1 = No problem at all, 2 = Veryslight problem, 3 = Somewhat of a problem, 4 = Major problem) for each BACS item	0–100%
Barriers to health-care index	The average number of barriers that women living with HIV indicated were problematic, regardless of the reported extent of the problem (response category 2, 3, or 4)	0–12
BACS-severity score	A measure of problem severity, calculated as the average response on the Likert scale. BACS-severity scores were calculated for each BACS item, for the BACS questionnaire overall, and for the four sub-scales. Higher scores indicate increased problem severity. Scores ≥2 were considered significant.	1–4

Table 3. Characteristics of women living with HIV in the ELLA study.

	Global N = 1931	WEC N = 760	CEE N = 532	LA N = 519	China N = 120
Mean age (years)	40.1 ± 11.4	44.0 ± 10.8	33.2 ± 9.8	42.2 ± 11.1	37.7 ± 8.4
Risk factor for acquiring HIV
Sexual contact	1602 (83.0)	647 (85.1)	371 (69.7)	502 (96.7)	82 (68.3)
Intravenous drug user	150 (7.8)	79 (10.4)	63 (11.8)	4 (0.8)	4 (3.3)
Blood transfusion or organ transplant	126 (6.5)	20 (2.6)	66 (12.4)	10 (1.9)	30 (25.0)
Mother to child transmission	20 (1.0)	11 (1.4)	4 (0.8)	3 (0.6)	2 (1.7)
Other	2 (0.1)	1 (0.1)	–	–	1 (0.8)
Unknown	31 (1.6)	2 (0.3)	28 (5.3)	–	1 (0.8)
Immigration status
Not immigrant	1521 (78.8)	436 (57.4)	507 (95.3)	458 (88.2)	120 (100)
Immigrant for <1 year	7 (0.4)	3 (0.4)	–	4 (0.8)	–
Immigrant for 1–5 years	64 (3.3)	56 (7.4)	4 (0.8)	4 (0.8)	–
Immigrant for >5 years	339 (17.6)	265 (34.9)	21 (3.9)	53 (10.2)	–
Residence
Rural area	330 (17.1)	134 (17.6)	137 (25.8)	26 (5.0)	33 (27.5)
Urban area	1601 (82.9)	626 (82.4)	395 (74.2)	493 (95.0)	87 (72.5)
Legally married
No	1151 (59.6)	460 (60.5)	321 (60.3)	347 (66.9)	23 (19.2)
Yes	780 (40.4)	300 (39.5)	211 (39.7)	172 (33.1)	97 (80.8)
Living status
Living alone	415 (21.5)	223 (29.3)	96 (18.0)	71 (13.7)	25 (20.8)
Not living alone	1516 (78.5)	537 (70.7)	436 (82.0)	448 (86.3)	95 (79.2)
Partner HIV status for women living with partner
HIV-negative	513 (48.1)	226 (59.5)	149 (40.8)	93 (39.1)	45 (53.6)
HIV-positive	487 (45.6)	134 (35.3)	191 (52.3)	128 (53.8)	34 (40.5)
Unknown	67 (6.3)	20 (5.3)	25 (6.8)	17 (7.1)	5 (6.0)
Regular support from family or friends
No	770 (39.9)	373 (49.1)	123 (23.1)	222 (42.8)	52 (43.3)
Yes	1161 (60.1)	387 (50.9)	409 (76.9)	297 (57.2)	68 (56.7)
Disclosure of HIV status
No disclosure or disclosed to intimate relations	1686 (87.3)	643 (84.6)	477 (89.7)	450 (86.7)	116 (96.7)
Complete or extended disclosure	243 (12.6)	115 (15.1)	55 (10.3)	69 (13.3)	4 (3.3)
Missing	2 (0.1)	2 (0.3)	–	–	–
Payment method for HIV treatment
Government or private insurance	1774 (91.9)	742 (97.6)	529 (99.4)	471 (90.8)	32 (26.7)
Combination of government and/or private and/or out-of-pocket	61 (3.2)	6 (0.8)	–	–	55 (45.8)
Self-pay, out-of-pocket	92 (4.8)	11 (1.4)	1 (0.2)	47 (9.1)	33 (27.5)
Not available	4 (0.2)	1 (0.1)	2 (0.4)	1 (0.2)	–
Years of formal education completed
≤12	1256 (65.0)	429 (56.4)	356 (66.9)	375 (72.3)	96 (80.0)
>12	647 (33.5)	304 (40.0)	176 (33.1)	143 (27.6)	24 (20.0)
Not available	28 (1.5)	27 (3.6)	0	1 (0.2)	0
Current primary occupation
Employed/self-employed	1014 (52.5)	399 (52.5)	253 (47.6)	287 (55.3)	75 (62.5)
Retired	157 (8.1)	79 (10.4)	31 (5.8)	44 (8.5)	3 (2.5)
Student	64 (3.3)	34 (4.5)	19 (3.6)	11 (2.1)	–
Unemployed	696 (36.0)	248 (32.6)	229 (43.0)	177 (34.1)	42 (35.0)
Time unemployed (months)
≤12 months	114 (5.9)	39 (5.1)	33 (6.2)	35 (6.7)	7 (5.8)
>12 months	582 (30.1)	209 (27.5)	196 (36.8)	142 (27.4)	35 (29.2)
Mean number of children*	1.4 ± 1.4	1.4 ± 1.4	0.9 ± 0.9	1.9 ± 1.6	1.0 ± 1.0
Time from HIV diagnosis to enrollment (years)
<1	118 (6.1)	20 (2.6)	29 (5.5)	37 (7.1)	32 (26.7)
1–5	617 (32.0)	171 (22.5)	214 (40.2)	173 (33.3)	59 (49.2)
>5–10	485 (25.1)	170 (22.4)	154 (29.0)	142 (27.4)	19 (15.8)
>10	633 (32.8)	359 (47.2)	129 (24.3)	140 (27.0)	5 (4.2)
Unknown	78 (4.0)	40 (5.3)	6 (1.1)	27 (5.2)	5 (4.2)
Use of antiretroviral therapy (ART)
Never used ART	157 (8.1)	34 (4.5)	64 (12.0)	42 (8.1)	17 (14.2)
Used or currently using ART	1774 (91.9)	726 (95.5)	468 (88.0)	477 (91.9)	103 (85.8)
Last viral load (copies/mL)
<400	1277 (66.1)	631 (83.0)	272 (51.1)	317 (61.1)	57 (47.5)
≥400	361 (18.7)	70 (9.2)	189 (35.3)	91 (17.5)	11 (9.2)
Unknown	293 (15.2)	59 (7.8)	71 (13.3)	111 (21.4)	52 (43.3)
Last CD4 + (cells/mm^3)
<200	209 (10.8)	48 (6.3)	75 (14.1)	65 (12.5)	21 (17.5)
201–350	286 (14.8)	88 (11.6)	96 (18.0)	81 (15.6)	21 (17.5)
351–500	408 (21.1)	136 (17.9)	143 (26.9)	92 (17.7)	37 (30.8)
>500	982 (50.9)	487 (64.1)	215 (40.4)	249 (48.0)	31 (25.8)
Unknown	46 (2.4)	1 (0.1)	3 (0.6)	32 (6.2)	10 (8.3)

Plus-minus values are means ± SD.

*For mean number of children, N = 119 for China, N = 531 for CEE, N = 512 for LA, N = 744 for WEC, and N = 1906 for the global population.

Figure 1. Prevalence of barriers to health care. Proportion of women responding that potential barriers included in the BACS questionnaire were no problem at all, a very slight problem, somewhat of a problem, or a major problem.

Figure 2. BACS severity scores. The position of the circle indicates the mean BACS severity score; the bars are 95% confidence intervals. Scores ≥2 were considered significant. The geography/distance subscale comprises BACS items 1 and 4. The medical and psychological service barriers subscale comprises BACS items 2, 3, 5, and 6. The community stigma barriers subscale comprises BACS items 7 and 8. The personal resource barriers subscale comprises BACS items 9, 10, 11, and 12.

Table 4. BACS severity scores for the 12 BACS items.

BACS Item	Global	WEC	CEE	LA	China
BACS item 1: Long distances to medical facilities/personnel	1.6 ± 0.9 N = 1919	1.5 ± 0.9 N = 752	1.6 ± 0.8 N = 531	1.6 ± 0.9 N = 517	2.4 ± 0.9 N = 119
BACS item 2: Decline to provide direct care to persons with HIV/AIDS	1.6 ± 1.1 N = 1914	1.5 ± 1.0 N = 748	1.7 ± 1.1 N = 529	1.5 ± 1.0 N = 517	2.7 ± 1.1 N = 120
BACS item 3: The lack of trained and competent HCPs in AIDS care	1.7 ± 1.1 N = 1909	1.6 ± 1.0 N = 744	1.7 ± 1.0 N = 528	1.8 ± 1.2 N = 517	2.9 ± 1.0 N = 120
BACS item 4: Lack of transportation	1.5 ± 0.9 N = 1916	1.5 ± 0.9 N = 749	1.5 ± 0.8 N = 532	1.5 ± 0.9 N = 517	2.4 ± 0.9 N = 118
BACS item 5: Lack of mental health HCPs	1.7 ± 1.0 N = 1905	1.6 ± 1.0 N = 740	1.6 ± 0.9 N = 528	1.7 ± 1.1 N = 517	2.6 ± 0.9 N = 120
BACS item 6: Lack of psychological support	1.8 ± 1.1 N = 1909	1.6 ± 1.0 N = 742	1.6 ± 0.9 N = 531	1.8 ± 1.1 N = 516	3.0 ± 0.9 N = 120
BACS item 7: Community HIV/AIDS knowledge	2.7 ± 1.2 N = 1907	2.5 ± 1.2 N = 738	2.5 ± 1.2 N = 532	3.0 ± 1.2 N = 517	3.0 ± 1.0 N = 120
BACS item 8: Community HIV/AIDS stigma	2.9 ± 1.2 N = 1905	2.7 ± 1.2 N = 741	2.9 ± 1.2 N = 528	3.1 ± 1.1 N = 516	3.3 ± 0.9 N = 120
BACS item 9: Lack of employment opportunities	2.7 ± 1.3 N = 1912	2.4 ± 1.3 N = 742	2.7 ± 1.2 N = 532	2.9 ± 1.3 N = 518	3.0 ± 1.0 N = 120
BACS item 10: Lack of supportive/understanding work environments	2.6 ± 1.2 N = 1899	2.5 ± 1.2 N = 732	2.5 ± 1.2 N = 530	2.8 ± 1.2 N = 517	3.0 ± 1.0 N = 120
BACS item 11: Personal financial resources	2.3 ± 1.1 N = 1920	2.2 ± 1.2 N = 752	2.2 ± 1.0 N = 532	2.3 ± 1.2 N = 516	3.0 ± 1.0 N = 120
BACS item 12: Lack of adequate/affordable housing	2.0 ± 1.2 N = 1918	1.9 ± 1.2 N = 747	1.9 ± 1.1 N = 532	2.0 ± 1.3N = 519	2.3 ± 1.1 N = 120

Mean ± SD is shown. A score of 1 = No problem at all, 2 = Very slight problem, 3 = Somewhat of a problem, and 4 = Major problem.

Table 5. Factors associated with overall BACS severity score in multivariate analysis.

			Multivariate analysis
Factor	BACS-severity score	Comparator	Estimate	P value
Region
CEE	2.02 ± 0.61	WEC	–0.1342	0.1308
China	2.80 ± 0.55	WEC	0.7204	0.0005
LA	2.18 ± 0.71	WEC	0.0827	0.3332
WEC	1.96 ± 0.72
Age (y)
< 50	2.12 ± 0.71	50 and above	0.1377	0.0015
≥50	1.94 ± 0.68
Unemployment
Yes	2.20 ± 0.72	No	0.1292	0.0005
No	2.02 ± 0.70
Payment plan HIV treatment
Self-pay, out of pocket	2.75 ± 0.63	Government or private insurance	0.2544	0.0357
Government or private insurance	2.03 ± 0.69
Number of comorbidities
1	2.08 ± 0.70	None	0.1050	0.0084
2	2.11 ± 0.70	None	0.1077	0.0399
≥3	2.18 ± 0.71	None	0.2956	<0.0001
None	2.06 ± 0.72
Smoking history
Smoker	2.12 ± 0.69	Never or ex-smoker	0.1041	0.0044
Never or ex-smoker	2.07 ± 0.72
Changed treatment facility during last 12 months
Yes	2.31 ± 0.80	No	0.2450	0.0058
No	2.07 ± 0.70
Missed scheduled appointments
Yes	2.16 ± 0.72	No	0.1079	0.0218
No	2.07 ± 0.71
Adherence to reported guidelines
Yes	2.05 ± 0.70	No	–0.0494	0.4335
No	2.13 ± 0.73
Contraceptive drug
Available	2.01 ± 0.71	Not available	–0.1655	0.0150
Not available	2.16 ± 0.70
HPV test routine
No	2.01 ± 0.70	Yes	–0.2229	0.0006
Yes	2.17 ± 0.71

Other factors tested but not retained in the final model were immigration status (immigrant, non-immigrant), residence (rural, urban), living status (alone, not alone), partner/husband HIV status (negative, positive), regular family friends support (no, yes), disclosure of HIV status (no disclosure or disclosed to close relations, complete or extended disclosure), years of formal education (≤12, >12), number of children that the woman has had (1, 2, 3, 4, 5, none), number of children under 18 years at home (≥1, none), last viral load (<400 copies /mL, ≥400 copies/mL), last recorded CD4 (<200 cells/mm³, 200–350 cells/mm³, 351–500 cells/mm³, > 500 cells/mm³), risk factor of acquiring HIV (blood transfusion or organ transplant, intravenous drug user, mother-to-child transmission, sexual contact), time from HIV diagnosis to enrollment (<1 year, 1–5 years, >5–10 years, >10 years), antiretroviral therapy use (never used, previously used or currently using), diagnosed with AIDS-defining illness (yes, no), type of site (private health services, national health services), obstetrics/gynecology/pediatric/contraceptive clinic services (available, not available), psychologist (available, not available), childcare and transportation service (available, not available), mental health-related drug (available, not available), hormonal replacement (available, not available), none female therapies (no, yes), average visit frequency (once a year, more than once a year), frequency of mental health disorder assessment (assessed, not assessed).