Background
Methods
Study setting
Participants
Data collection
Questionnaires
Analysis
Results
Characteristics of participants
Characteristic | Entire Sample (n = 359) | Brighton, UK (n = 75) | London, UK (n = 75) | Denver, United States (n = 78) | Dublin, Ireland (n = 51) | Toronto, Canada (n = 80) | p-value (Statistical Test) |
---|---|---|---|---|---|---|---|
Age (years) (n = 353) | |||||||
Median (25, 75th percentile) | 51 (42, 59) | 54 (47, 60) | 51 (44, 60) | 51 (39, 57) | 43 (36, 54) | 55 (49, 61) | < 0.001 (KW) |
Gender (n = 354) | |||||||
Cis-Woman | 40 (11%) | 1 (1%) | 4 (6%) | 19 (25%) | 9 (18%) | 7 (9%) | < 0.001 (MC) |
Cis-Man | 293 (83%) | 74 (99%) | 65 (90%) | 52 (68%) | 41 (82%) | 61 (76%) | |
Trans Woman: Man to woman | 3 (1%) | 0 (0%) | 0 (0%) | 1 (1%) | 0 (0%) | 2 (3%) | |
Two-spirited | 11 (3%) | 0 (0%) | 2 (3%) | 3 (4%) | 0 (0%) | 6 (8%) | |
Non-binary | 5 (1%) | 0 (0%) | 1 (1%) | 2 (3%) | 0 (0%) | 2 (3%) | |
Othera | 2 (< 1%) | 0 (0%) | 0 (0%) | 0 (0%) | 0 (0%) | 2 (3%) | |
Marital or Partnership Status (n = 339) | |||||||
Single | 196 (55%) | 39 (53%) | 45 (61%) | 42 (54%) | 17 (34%) | 53 (66%) | 0.001 (MC) |
Married, common-law, partner or relationship | 88 (25%) | 15 (20%) | 17 (23%) | 24 (31%) | 24 (48%) | 8 (10%) | |
Separated or Divorced or Widowed | 55 (15%) | 15 (20%) | 10 (14%) | 11 (14%) | 5 (10%) | 14 (18%) | |
Have Children (n = 355) | 86 (24%) | 13 (17%) | 10 (14%) | 28 (36%) | 12 (24%) | 23 (29%) | 0.008 (FE) |
Live alone (n = 357) | 186 (51%) | 34 (45%) | 43 (58%) | 32 (41%) | 13 (26%) | 64 (80%) | < 0.001 (MC) |
Main Source of Income (n = 357) | |||||||
Employment (full, part-time, or self) Income Support (e.g. Disability, Welfare, | 177 (50%) | 50 (67%) | 39 (53%) | 43 (55%) | 41 (82%) | 4 (5%) | < 0.001 (MC) |
Worker’s Compensation) Employment Insurance or Long Term Disability) | 121 (34%) | 10 (13%) | 24 (32%) | 25 (32%) | 7 (14%) | 55 (69%) | |
Pension, Student Loans, or Savings | 41 (12%) | 13 (17%) | 6 (8%) | 3 (4%) | 1 (2%) | 18 (23%) | |
Under the table work or Street-related work (e.g. pan-handling) | 3 (1%) | 0 (0%) | 0 (0%) | 1 (1%) | 0 (0%) | 2 (3%) | |
Current employment status (n = 353) | |||||||
Employed (full time or part time) | 167 (47%) | 48 (65%) | 35 (47%) | 44 (56%) | 37 (76%) | 3 (4%) | < 0.001 (MC) |
Student, Retired, or Volunteering | 59 (17%) | 15 (20%) | 11 (15%) | 6 (8%) | 5 (10%) | 22 (28%) | |
Unemployed or on disability | 124 (35%) | 11 (15%) | 26 (35%) | 26 (33%) | 6 (12%) | 55 (69%) | |
Other (baby sitter, carer, stay at home parent) | 5 (1%) | 0 (0%) | 2 (3%) | 2 (3%) | 1 (2%) | 0 (0%) | |
Highest level of education (n = 357) | |||||||
No formal education; secondary school completed | 88 (25%) | 15 (20%) | 18 (24%) | 19 (24%) | 11 (22%) | 25 (31%) | 0.29 (MC) |
Completed trade or technical training, or completed college | 132 (37%) | 27 (36%) | 24 (32%) | 30 (39%) | 16 (32%) | 35 (44%) | |
Completed university or postgraduate education | 137 (38%) | 33 (44%) | 32 (43%) | 29 (37%) | 23 (46%) | 20 (25%) | |
How do you describe your race? | |||||||
White (n = 314) | 255 (81%) | 64 (87%) | 53 (90%) | 52 (72%) | 36 (80%) | 50 (78%) | 0.075 (FE) |
Black or African American (n = 234) | 27 (12%) | 2 (3%) | 12 (27%) | 1 (2%) | 5 (13%) | 7 (14%) | < 0.001 (FE) |
Asian (n = 227) (origins in far east, south east Asia, or Indian subcontinent including e.g. Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, Philippine Islands, Thailand, Vietnam) | 26 (10%) | 5 (8%) | 7 (18%) | 6 (10%) | 2 (5%) | 6 (13%) | 0.391 (FE) |
First Nations (Indigenous), Inuit, Métis (n = 255) | 31 (12%) | 0 (0%) | 1 (3%) | 19 (29%) | 0 (0%) | 11 (22%) | < 0.001 (FE) |
Year of HIV diagnosis (n = 244) | |||||||
Median | 2005 | 2007 | 2001 | 2002 | 2014 | 2000 | < 0.001 (KW) |
25, 75th percentile | 1997, 2013 | 1998, 2013 | 1997, 2001 | 1992, 2013 | 2010, 2018 | 1992, 2007 | |
Most recent CD4 count (n = 353) | |||||||
< 200 cells/mm3 | 44 (13%) | 10 (14%) | 6 (8%) | 14 (18%) | 4 (8%) | 10 (13%) | 0.013 (MC) |
201–499 cells/mm3 | 61 (17%) | 17 (24%) | 15 (20%) | 11 (14%) | 2 (4%) | 16 (20%) | |
> 500 cells/mm3 | 134 (38%) | 22 (31%) | 23 (31%) | 32 (42%) | 31 (62%) | 26 (33%) | |
Don’t know | 114 (32%) | 23 (32%) | 30 (41%) | 20 (26%) | 13 (26%) | 28 (25%) | |
Currently Taking Antiretroviral Medication (n = 357) | 351 (98%) | 75 (100%) | 73 (99%) | 77 (99%) | 50 (100%) | 76 (95%) | 0.16 (FE) |
Missed at least one ARV dose in the last 7 days (n = 350) | 281 (80%) | 66 (88%) | 57 (78%) | 60 (80%) | 45 (90%) | 53 (70%) | 0.02 (FE) |
Undetectable viral load (< 50 copies/mL) (n = 354) | 328 (93%) | 73 (99%) | 69 (93%) | 66 (85%) | 72 (91%) | 72 (91%) | 0.008 (FE) |
Median # of co-morbidities (25, 75th percentile) (n = 357) | 4 (2, 9) | 3 (1, 5) | 4 (1, 9) | 4 (2, 9) | 3 (1, 4) | 8 (4, 12) | < 0.001 (KW) |
Common Concurrent health condition (≥ 30% of sample) | |||||||
Mental health condition (n = 351) | 162 (46%) | 22 (30%) | 34 (47%) | 36 (47%) | 16 (33%) | 54 (69%) | < 0.001 (MC) |
Chronic pain (joint) (n = 346) | 113 (33%) | 13 (18%) | 23 (32%) | 29 (38%) | 4 (8%) | 44 (58%) | < 0.001 (MC) |
Gastrointestinal conditions (n = 348) | 108 (31%) | 18 (24%) | 20 (28%) | 23 (30%) | 14 (28%) | 33 (44%) | 0.10 (FE) |
Trouble sleeping (n = 351) | 182 (52%) | 74 (21%) | 73 (21%) | 78 (22%) | 50 (14%) | 76 (22%) | < 0.001 (FE) |
High cholesterol (n = 347) | 111 (32%) | 21 (28%) | 20 (27%) | 35 (33%) | 15 (31%) | 30 (40%) | 0.50 (FE) |
Living with 2 or more concurrent health conditions in addition to HIV (n = 357) | 274 (77%) | 52 (69%) | 50 (68%) | 65 (83%) | 33 (66%) | 74 (93%) | < 0.001 (FE) |
Cigarette smoking history (last 30 days) (n = 349) | |||||||
I currently smoke or I smoke occasionally | 102 (29%) | 19 (26%) | 22 (30%) | 13 (17%) | 13 (26%) | 35 (44%) | 0.011 (MC) |
I am a former smoker | 117 (33%) | 27 (37%) | 19 (26%) | 35 (46%) | 14 (28%) | 22 (28%) | |
I have never been a smoker | 130 (37%) | 28 (28%) | 31 (43%) | 29 (38%) | 21 (42%) | 21 (26%) | |
Substance use in the past 30 days | |||||||
Alcohol (n = 351) | 196 (56%) | 53 (72%) | 46 (63%) | 37 (47%) | 30 (60%) | 30 (40%) | 0.001 (MC) |
Cannabis (n = 349) | 91 (26%) | 10 (14%) | 11 (16%) | 27 (35%) | 7 (14%) | 36 (47%) | < 0.001 (MC) |
Non-Legalized Substances—Methamphetamines, cocaine, heroin, or non-prescribed opioids (n = 353) | 54 (15%) | 7 (10%) | 10 (14%) | 9 (12%) | 3 (6%) | 25 (32%) | 0.001 (MC) |
Providers, services or supports accessed in the last 6 months | |||||||
HIV Provider (n = 352) | 235 (67%) | 47 (63%) | 48 (66%) | 55 (72%) | 32 (64%) | 53 (68%) | 0.751 (FE) |
Primary Care Provider (nurse practitioner, doctor, or physician) (n = 355) | 191 (54%) | 31 (41%) | 34 (46%) | 50 (64%) | 19 (38%) | 57 (73%) | < 0.001 (MC) |
Substance Use Provider (doctor or physician, counsellor, therapist, chem sex support worker or drug support services) (n = 354) | 36 (10%) | 4 (5%) | 9 (12%) | 4 (5%) | 1 (2%) | 18 (23%) | 0.003 (FE) |
Psychiatrist (n = 353) | 55 (16%) | 2 (3%) | 11 (15%) | 13 (17%) | 3 (6%) | 26 (33%) | < 0.001 (FE) |
Psychologist (n = 349) | 38 (11%) | 2 (3%) | 9 (12%) | 10 (13%) | 4 (8%) | 13 (17%) | 0.046 (FE) |
Nurse (n = 347) | 77 (22%) | 5 (7%) | 14 (19%) | 19 (25%) | 8 (17%) | 31 (40%) | < 0.001 (FE) |
Occupational Therapist (n = 347) | 27 (8%) | 0 (0%) | 5 (7%) | 3 (4%) | 1 (2%) | 18 (23%) | < 0.001 (FE) |
Physiotherapist (n = 349) | 42 (12%) | 3 (4%) | 5 (7%) | 5 (6%) | 4 (8%) | 25 (32%) | < 0.001 (FE) |
Social Worker (n = 349) | 54 (16%) | 1 (1%) | 4 (6%) | 17 (22%) | 1 (2%) | 31 (39%) | < 0.001 (FE) |
Community-Based Organization (n = 321) | 70 (22%) | 7 (10%) | 8 (12%) | 12 (18%) | 5 (11%) | 38 (53%) | < 0.001 (CS) |
Family (n = 355) | 83 (23%) | 7 (10%) | 17 (23%) | 28 (36%) | 8 (16%) | 23 (29%) | 0.001 (FE) |
Partner or spouse (n = 354) | 16 (21%) | 16 (21%) | 20 (27%) | 18 (23%) | 15 (31%) | 14 (18%) | 0.484 (FE) |
Friends (n = 353) | 137 (39%) | 21 (28%) | 26 (36%) | 33 (43%) | 12 (25%) | 45 (57%) | < 0.001 (FE) |
General health status (n = 357) | |||||||
Excellent | 50 (14%) | 10 (13%) | 10 (14%) | 12 (15%) | 9 (18%) | 9 (11%) | 0.019 (FE) |
Very good | 96 (27%) | 23 (31%) | 17 (23%) | 23 (30%) | 21 (42%) | 12 (15%) | |
Good | 102 (29%) | 24 (32%) | 14 (19%) | 21 (27%) | 12 (24%) | 31 (39%) | |
Fair | 77 (22%) | 14 (19%) | 21 (28%) | 17 (22%) | 7 (14%) | 18 (23%) | |
Poor | 32 (9%) | 4 (5%) | 12 (16%) | 1 (2%) | 1 (2%) | 10 (13%) | |
Engaged in ≥ 150 min of moderate to vigorous aerobic physical activity in the past week (n = 338) | 143 (40%) | 38 (51%) | 28 (38%) | 28 (36%) | 18 (36%) | 31 (39%) | 0.29 (CS) |
Current Exercise History (n = 355) | |||||||
Do not exercise, do not intend to start | 42 (12%) | 6 (8%) | 11 (15%) | 7 (9%) | 3 (6%) | 15 (19%) | 0.018 (MC) |
Do not exercise, but thinking of starting | 58 (16%) | 10 (14%) | 8 (11%) | 14 (18%) | 11 (22%) | 15 (19%) | |
Exercise but not regularly | 90 (25%) | 16 (22%) | 19 (26%) | 16 (21%) | 18 (36%) | 21 (27%) | |
Exercise regularly but only begun so in last 6 months | 36 (10%) | 7 (10%) | 9 (12%) | 13 (17%) | 0 (0%) | 7 (9%) | |
Exercise regularly and have done so for > 6 months | 101 (29%) | 30 (41%) | 19 (26%) | 21 (27%) | 17 (34%) | 14 (18%) | |
Exercised regularly in past but not doing so currently | 28 (8%) | 5 (7%) | 8 (11%) | 7 (9%) | 1 (2%) | 7 (9%) | |
Days of exercise in past week (n = 357) | |||||||
0 (none) | 97 (27%) | 20 (27%) | 22 (30%) | 20 (26%) | 10 (20%) | 25 (31%) | 0.86 (MC) |
1 day | 38 (11%) | 8 (11%) | 9 (12%) | 8 (10%) | 3 (6%) | 10 (13%) | |
2 days | 43 (12%) | 11 (15%) | 4 (5%) | 11 (14%) | 9 (18%) | 8 (10%) | |
3 days | 46 (13%) | 9 (12%) | 10 (14%) | 11 (14%) | 7 (14%) | 9 (11%) | |
4 days | 41 (12%) | 12 (16%) | 7 (10%) | 8 (10%) | 5 (10%) | 9 (11%) | |
5 days | 32 (9%) | 3 (4%) | 9 (12%) | 7 (9%) | 7 (14%) | 6 (8%) | |
6 days | 21 (6%) | 6 (8%) | 6 (8%) | 5 (6%) | 2 (4%) | 2 (3%) | |
7 days | 39 (11%) | 6 (8%) | 7 (10%) | 8 (10%) | 7 (14%) | 11 (14%) |
Mode of administration
Internal consistency reliability
Severity Scale | Presence Scale | Episodic Scale | |||||
---|---|---|---|---|---|---|---|
EDQ Domain | # items | Cronbach Alpha | 95% CI | Cronbach Alpha | 95% CI | Cronbach Alpha | 95% CI |
Physical | 10 | 0.89 | 0.87, 0.90 | 0.84 | 0.82, 0.86 | 0.87 | 0.84, 0.89 |
Cognitive | 3 | 0.85 | 0.82, 0.88 | 0.78 | 0.75, 0.82 | 0.87 | 0.84, 0.89 |
Mental Emotional | 5 | 0.88 | 0.86, 0.90 | 0.83 | 0.80, 0.86 | 0.87 | 0.85, 0.89 |
Uncertainty | 5 | 0.86 | 0.84, 0.88 | 0.72 | 0.68, 0.77 | 0.89 | 0.87, 0.90 |
Day to Day | 5 | 0.91 | 0.89, 0.92 | 0.88 | 0.86, 0.90 | 0.88 | 0.87, 0.90 |
Social | 7 | 0.84 | 0.82, 0.86 | 0.79 | 0.76, 0.83 | 0.88 | 0.86, 0.90 |
Test–retest reliability
Severity Scale | Presence Scale | ||||
---|---|---|---|---|---|
EDQ Domain | # items | ICC | 95% CI | ICC | 95% CI |
Physical | 10 | 0.79 | 0.71, 0.85 | 0.76 | 0.69, 0.82 |
Cognitive | 3 | 0.84 | 0.80, 0.87 | 0.77 | 0.72, 0.82 |
Mental Emotional | 5 | 0.84 | 0.79, 0.87 | 0.78 | 0.73, 0.82 |
Uncertainty | 5 | 0.81 | 0.71, 0.87 | 0.71 | 0.64, 0.77 |
Day to Day | 5 | 0.88 | 0.85, 0.91 | 0.85 | 0.82, 0.88 |
Social | 7 | 0.85 | 0.80, 0.88 | 0.80 | 0.75, 0.84 |
Minimum Detectable Change (MDC)
Severity Scale | Presence Scale | Episodic Scale | ||||
---|---|---|---|---|---|---|
EDQ Domain | MDC (90%) | MDC (95%) | MDC (90%) | MDC (95%) | MDC (90%) | MDC (95%) |
Physical | 18 | 22 | 31 | 37 | 43 | 51 |
Cognitive | 19 | 23 | 45 | 54 | 64 | 76 |
Mental Emotional | 21 | 25 | 39 | 47 | 56 | 66 |
Uncertainty | 21 | 25 | 38 | 45 | 54 | 65 |
Day to Day | 16 | 19 | 36 | 43 | 46 | 55 |
Social | 17 | 20 | 31 | 37 | 37 | 44 |