Table 1.
n | % or median (IQR) | |
---|---|---|
Sociodemographic characteristics | ||
Age (years) | 195 | 53 [45–61] |
Sex | ||
Male | 148 | 76% |
Female | 47a | 24% |
Full-time permanent work contract | ||
Yes | 75 | 38% |
No | 120 | 62% |
Financial situation | ||
Difficult | 40 | 21% |
Average | 65 | 33% |
Comfortable | 50 | 26% |
Very comfortable | 40 | 21% |
Educational level | ||
No high-school diploma | 75 | 39% |
High-school or post-secondary diploma | 120 | 61% |
Having a partner or partners | ||
Yes | 154 | 79% |
No | 41 | 21% |
Living with one's steady partner | ||
Yes | 85 | 44% |
No | 110b | 56% |
Having dependents | ||
Yes | 39 | 20% |
No | 156 | 80% |
HIV status of one's steady partner | ||
No steady partner | 90 | 46% |
Partner living with HIV | 32 | 16% |
Partner living without HIV | 70 | 69% |
Clinical characteristics | ||
HIV diagnosis | ||
Time since HIV diagnosis (years) | 195 | 17 [11–25] |
HIV diagnosis in 1996 or later | 128 | 66% |
HIV diagnosis before 1996 | 67 | 34% |
Engagement in HIV care | ||
Time between HIV diagnosis and first ART (years) | 195 | 1 [0–4] |
Time on current ART (years) | 195 | 3 [2–5] |
Time since the most recent detectable viral load (years) | 195 | 7 [5–11] |
CD4 nadir (cells/mm3) | ||
<200 | 66 | 34% |
≥200 | 122 | 63% |
Comorbidities | ||
1 comorbidity | 63 | 32% |
≥2 comorbidities | 31 | 16% |
Hepatitis C | 22 | 11% |
Lifetime experience of depression and evolution of morale in the previous 5 years | ||
Unchanged/improved morale and never experienced depression | 105 | 54% |
Deteriorated morale and experienced depression | 15 | 8% |
Deteriorated morale but never experienced depression | 6 | 3% |
Unchanged/improved morale but had experienced depression | 69 | 35% |
Psychosocial characteristics and living with HIV | ||
Sense of belonging to a community | ||
People living with HIV | 136 | 70% |
LGBT | 81 | 42% |
Heterosexuals | 51 | 26% |
Drug users | 10 | 5% |
Self-description as a person living with (on a scale from 0 to 10) | ||
Ashamed (0) to proud (10) | 195 | 5 [5–8] |
Not confident (0) to confident (10) | 195 | 8 [5–10] |
Sick (0) to in good health (10) | 195 | 8 [6–10] |
Excluded (0) to socially integrated (10) | 195 | 9 [6–10] |
Vulnerable (0) to strong (10) | 195 | 8 [6–10] |
Post-traumatic growth inventory scalec | ||
Global score (range 21–84) | 195 | 43 [34–55] |
‘New possibilities’ sub-score (range 5–20) | 195 | 10 [7–14] |
‘Spiritual change’ sub-score (range 2–8) | 195 | 3 [2–5] |
‘Personal strength’ sub-score (range 4–16) | 195 | 9 [7–12] |
‘Relating to others’ sub-score (range 7–28) | 195 | 13 [9–17] |
‘Appreciation of life’ sub-score (range 3–12) | 195 | 8 [6–9] |
Self-identification as an activist in the fight against HIV | ||
Yes, definitely | 58 | 30% |
Yes, rather | 51 | 26% |
Not really | 57 | 29% |
Not at all | 29 | 15% |
Moral support | ||
Not having someone to talk to about personal issues related to HIV | 60 | 31% |
Having someone to talk to about personal issues related to HIV | 112 | 57% |
Not concerned with personal issues related to HIV | 23 | 12% |
Feeling greatly affected by | ||
The risk of transmitting the virus to someone | 94 | 48% |
The cost for the collectivity (French general population) | 94 | 48% |
Having to use condoms during sex | 89 | 46% |
Mandatory daily medication | 88 | 45% |
Having to live with a secret | 84 | 43% |
The negative effect of HIV on sexual life | 75 | 39% |
HIV-related discrimination | 72 | 37% |
An uncertain future because of HIV | 71 | 36% |
A shorter life expectancy | 63 | 32% |
Difficulties to build a stable relationship | 56 | 29% |
Side effects of current ART | 55 | 28% |
Excessive fatigue | 48 | 25% |
Not living a normal life | 47 | 24% |
A negative effect of HIV on one's professional life | 44 | 23% |
Out-of-pocket expenses related to HIV | 42 | 22% |
Perception of overall health evolution since HIV acquisition | ||
Deteriorated | 34 | 17% |
Unchanged or improved | 161 | 83% |
Ease of taking daily treatment | ||
Difficult or very difficult | 28 | 14% |
Easy or very easy | 167 | 86% |
Discomfort related to side effects of ART | ||
Slightly or not troublesome side effects or no side effects | 120 | 62% |
Quite troublesome | 50 | 26% |
Very troublesome | 25 | 13% |
Information about health and HIV | ||
Health literacy | ||
Health literacy score | 195 | 2.8 [2.7–3.0] |
Inadequate health literacy | 8 | 4% |
Problematic health literacy | 155 | 80% |
Sufficient health literacy | 32 | 16% |
Number of information sources about HIVd | 3 [2–4] | |
Perceived information about HIV scientific breakthroughs from one's doctor | ||
Not at all or not sufficiently informed | 18 | 9% |
Sufficiently or very well informed | 177 | 91% |
Perception of ART efficacy and HIV cure | ||
Perception of ART efficacy | ||
Belief in short-term efficacy of ART | 6 | 3% |
Belief in mid-term efficacy of ART | 21 | 11% |
Belief in long-term efficacy of ART | 112 | 57% |
Did not know | 56 | 29% |
Important to be cured of HIV | ||
No | 5 | 3% |
Yes | 190 | 97% |
Perception of availability of HIV cure treatment | ||
Believed that a HIV cure treatment would be available in lifetime | 119 | 61% |
Did not believe that a HIV cure treatment would be available in lifetime | 25 | 13% |
Did not know | 51 | 26% |
Had heard about HIV cure-related clinical trials | ||
No | 116 | 60% |
Yes | 79 | 41% |
Previous clinical trial experience | ||
Negative experience | 5 | 3% |
Positive experience | 78 | 40% |
No experience | 106 | 54% |
Willingness to participate in HIV-cure related clinical trialse | ||
Yes, definitely | 83 | 43% |
Yes, perhaps | 74 | 38% |
Not really | 21 | 11% |
Not at all | 17 | 9% |
Includes one transgender person.
20 of whom had a steady partner but did not live with him/her. In total, 105 (54%) declared having a steady partner.
Following HIV diagnosis.
Each of following information sources counts for one point: the HIV medical staff, attending physician, media (reading, TV, radio, internet, social networks), scientific articles or journals, people living with HIV associations, friends or relatives, other people living with HIV.
Outcome ‘willingness to participate in HCRCT’ studied in the present paper was defined as replying ‘Yes, definitely’ versus all other answers (i.e. ‘Yes, perhaps’, ‘Not really’, ‘Yes, perhaps’). ART: antiretroviral therapy; LGBT: lesbian, gay, bisexual, and transgender.