Table 2. Sample characteristics.
| Variables | n (%) or mean (SD) |
|---|---|
| Demographic characteristics | |
| Age (years; mean, SD) | 50.8 (12.3) |
| Gender (Male) | 494 (94.6) |
| Men who have sex with men | 410 (78.5) |
| Australian born | 322 (61.6) |
| Living alone | 212 (40.5) |
| Speaks English at home | 493 (94.3) |
| Ability to read, speak and understand English rated as ‘excellent’ | 427 (81.6) |
| Australian citizen | 461 (88.1) |
| Has Medicare access | 508 (97.1) |
| Met the Medicare safety neta in previous 12-months | 94 (18.0) |
| Has private health insurance | 221 (42.3) |
| Lives in a major city | 452 (86.4) |
| University educated | 197 (38.0) |
| Financial / employment status | |
| On social welfare | 212 (40.6) |
| Required financial assistance in previous 12 months | 138 (26.4) |
| No employment | 226 (43.2) |
| Underemployment (would increase hours if available) | 220 (42.1) |
| Current weekly income after tax (median, IQR) | 645 (580) |
| Lives in public-subsidized accommodation | 105 (20.1) |
| Lives with someone who is financially dependent on them | 48 (9.2) |
| Received financial assistance in previous 12 months | |
| from family | 42 (21.8) |
| from Centrelinkb | 97 (50.3) |
| from partner | 18 (9.3) |
| from non-governmental organization | 80 (41.4) |
| In previous 12 months, for financial reasons, had to forego food, groceries, rent, household bills, furniture, clothing, white goods | 114 (21.8) |
| HIV healthcare and treatment access | |
| Uses the following for HIV management: | |
| hospital based HIV clinic | 254 (48.7) |
| health center specialized in HIV treatment | 135 (25.9) |
| community based general practice | 174 (33.3) |
| sexual health clinic / center | 168 (32.2) |
| naturopath | 26 (5.0) |
| hospital pharmacy | 259 (49.6) |
| home or community care | 14 (2.3) |
| drug or alcohol services | 9 (1.7) |
| HIV-related community organizations or support groups | 77 (14.8) |
| Primary HIV physician | |
| general practitioner | 181 (34.7) |
| hospital physician | 223 (42.7) |
| sexual health physician | 114 (21.8) |
| Study enrolment site | |
| high-caseload general practice | 145 (27.8) |
| hospital located clinic | 174 (33.3) |
| sexual health clinic / center | 203 (38.9) |
| Feels actively involved in the management / treatment of HIV | 506 (96.9) |
| Consults with primary HIV physician at least every six months | 512 (98.1) |
| Duration of care from primary HIV physician (years: mean, SD) | 11.3 (8.0) |
| Changed primary HIV physician in previous 12 months | 80 (15.3) |
| No payment required from patient for HIV consultations | 288 (82.8) |
| Has seen other medical specialists in the previous 12 months | 321 (61.5) |
| Has other healthcare providers involved in HIV care | 324 (62.1) |
| Cost of healthcare services over previous 12 months (dollars: mean, SD) | 281 (616) |
| Cost of alternative healthcare services over previous 12 months (dollars: mean, SD) | 675 (1161) |
| Cost a barrier to accessing medical services in the previous 12 months | 71 (13.6) |
| ART pharmacy charges a patient co-payment | 292 (55.8) |
| Money spent last time HIV medication obtained (dollars: mean, SD) | 106 (410) |
| Money spent in previous three months on non-HIV medication (dollars: mean, SD) | 145 (434) |
| Cost of all health needs (except medications) in previous 3 months (dollars: mean, SD) | 303 (1135) |
| HIV history | |
| HIV diagnosed prior to 1996 | 213 (40.8) |
| Male-to-male sexual transmission of HIV | 406 (77.6) |
| Nadir CD4 T-lymphocyte count <200 cells | 202 (38.7) |
| Previous AIDS | 120 (22.9) |
| Comorbidities | |
| Heart disease | 57 (10.9) |
| Hypertension | 94 (18.0) |
| Stroke | 9 (1.7) |
| Peripheral vascular disease | 8 (1.50) |
| Diabetes | 31 (5.9) |
| Chronic liver failure | 2 (0.4) |
| Chronic kidney disease | 14 (2.7) |
| Other diagnosed comorbidity | 102 (19.5) |
| Current health | |
| CD4 T-lymphocyte count (mean, SD) | 659 (273) |
| Length of undetectable HIV viral load >1 year | 399 (76.4) |
| Currently enrolled on a clinical trial | 45 (8.6) |
| Anaemiac | 33 (6.3) |
| Elevated ALTd (>40 U/L males, >35 U/L females) | 130 (24.9) |
| eGFRe <90 mls/min/1.73m2 | 290 (55.6) |
| Hepatitis co-infection | 70 (13.4) |
| Sexually transmitted infection in previous 12-months | 71 (13.6) |
| Hospitalized for ≥1 night in previous 12 months | 108 (20.7) |
| Missed ≥1 clinic appointment in previous 12 months | 71 (13.6) |
| Physical health | |
| Self-reported good / very good overall health | 435 (83.3) |
| One or more bed days due to illness in previous 12 months | 284 (54.4) |
| One or more doctor visits due to illness in previous 12 months | 358 (68.6) |
| Greater than one hospital inpatient day in previous 12 months | 100 (19.2) |
| Mental health | |
| Major depressive disorder on PHQ-9[35, 36] | 87 (16.7) |
| Psychiatric illness—currently clinically active | 112 (24.3) |
| Cognitive function | |
| Neurocognitive impairment | 148 (28.3) |
| Alcohol and drug use | |
| Alcohol dependent (CAGE[39]) | 106 (20.3) |
| Use of following drugs monthly or more in previous 12 months: | |
| cigarettes | 143 (27.4) |
| marijuana / hash | 94 (18.0) |
| amyl / poppers | 67 (12.8) |
| benzodiazepines | 39 (7.5) |
| ecstasy | 1 (0.2) |
| injected speed / amphetamines | 20 (3.8) |
| snorted or smoked speed / amphetamines | 17 (3.3) |
| injected cocaine | 2 (0.4) |
| snorted cocaine | 3 (0.6) |
| crystal methamphetamine | 23 (4.4) |
| GHB / GBH / liquid E / fantasy | 6 (1.1) |
| LSD | 2 (0.4) |
| PDE5 inhibitor (“viagra” or ‘similar’) | 67 (12.8) |
| heroin | 3 (0.6) |
| methadone | 9 (1.7) |
| opiates | 11 (2.1) |
| Life stressors | |
| More than 2 major stress events in previous 12 months | 133 (25.5) |
| Social support | |
| Married / de facto / in regular relationship | 226 (43.2) |
| In a serodiscordant sexual relationship | 136 (26.0) |
| Received less social support than wanted / needed | 302 (57.9) |
| Not linked to an HIV support organization | 388 (74.3) |
| HIV disclosure, stigma and discrimination | |
| Did not disclose HIV status | 25 (4.8) |
| Has been made to feel ashamed of HIV diagnosis | 224 (43.0) |
| Has felt blamed for having HIV | 173 (33.1) |
| Has felt avoided, excluded or rejected for having HIV | 214 (41.0) |
| Has had awkward interactions for having HIV | 248 (47.5) |
| Antiretroviral therapy | |
| ART as a single tablet regimen | 158 (30.3) |
| Once-daily ART dosing | 333 (63.7) |
| Twice-daily ART dosing | 186 (35.6) |
| ART requires fasting / food conditions | 351 (67.2) |
| Commenced ART within one year of diagnosis | 245 (46.8) |
| Commenced ART prior to 2004 | 247 (47.3) |
| Receiving ART through a clinical trial | 28 (5.4) |
| Receiving ART through directly observed therapy (DOT) | 8 (1.5) |
| When started ART felt ‘not at all’ / ‘only somewhat’ informed about ART | |
| side effects | 178 (34.1) |
| benefits | 115 (22.0) |
| dosing requirements | 44 (8.4) |
| lifestyle impacts | 151 (28.9) |
| own ART regimen | 106 (20.3) |
| Reason for starting ART: | |
| to prevent HIV disease progression to AIDS | 325 (62.6) |
| to reduce HIV symptoms | 167 (32.2) |
| to prevent transmission to HIV-negative partners | 101 (19.5) |
| to prevent transmission to the community | 94 (18.1) |
| due to high viral load | 233 (44.9) |
| due to low CD4 t-lymphocyte cell count | 263 (50.7) |
| following doctor’s advice | 328 (63.2) |
| following their own request | 64 (12.3) |
| Never speaks with HIV doctors or nurses about | |
| balancing ART regimen with overall health and lifestyle | 174 (33.5) |
| side effects associated with ART | 101 (19.5) |
| delaying, interrupting or changing ART | 250 (48.3) |
| cost burden of ART | 425 (82.1) |
| I forget to take ART medications | 242 (46.4) |
| I am careless at times about taking ART medications | 86 (16.5) |
| Sometimes if I feel worse I stop taking ART medications | 48 (9.2) |
| Skipped ART once or more in the previous weekend | 35 (6.7) |
| Experienced ART side effects in the previous 12 months | 297 (56.9) |
| Experienced difficulties accessing pharmacy for ART | 32 (6.1) |
| Missed ART once or more in the previous week | 83 (15.9) |
| Delayed / interrupted ART in the previous 12 months | 34 (6.5) |
| Delayed / interrupted ART in the previous 12 months for ≥1 week | 20 (4.0) |
| Doctor unaware of ART interruption / delay in previous 12 months | 7 (1.3) |
| Delayed / interrupted ART prior to 12 months ago | 85 (17.5) |
| Delayed / interrupted ART prior to 12 months ago for ≥1 week | 66 (12.6) |
| Doctor unaware of prior ART interruption / delay | 14 (2.7) |
| ART necessity concerns | |
| Necessity concerns summary scoref (mean, SD) | 62.0 (7.0) |
| Concomitant medications | |
| Daily concomitant medication pill burden (mean, SD) | 3.6 (4.3) |
| Delayed / interrupted in previous 12 months | 60 (14.0) |
| Delayed / interrupted in previous 12 months for ≥1 week | 37 (7.1) |
| Doctor unaware of interruption / delay in previous 12 months | 27 (5.2) |
| Delayed / interrupted prior to 12 months ago | 49 (12.3) |
| Delayed / interrupted prior to 12 months ago for ≥1 week | 32 (6.1) |
| Doctor unaware of prior ART interruption / delay | 19 (3.6) |
| PRO-QOL HIV | |
| PRO-QOL HIV summary scoreg (mean, SD) | 40.1 (23.4) |
a whereby medical costs—including pharmaceutical co-payments, are capped after reaching an annual threshold
b social services
c Anaemia defined by haemoglobin <130g/L in men and <120g/L in women[47]
d ALT = alanine aminotransaminase
e eGFR = estimated glomerular filtration rate
f sample summary score (mean) (higher scores indicative of less belief in necessity or acceptability of ART)
g sample summary score (mean) (higher score indicative of lower quality of life)