Background to the survey
The SIGMA survey is the largest study of people with HIV
conducted in the UK. 2367 people responded to a survey distributed through
newsletters and self-help groups, and regional and gender distribution of
respondents closely matched national distribution. However, responses from Black
Africans under-represented national epidemiology, comprising 6% of the sample
compared with 17% of those diagnosed HIV-positive in England and Wales in
1997.
Educational attainment was high in this sample, especially
amongst gay men (34% of gay men had degrees), but many Africans had also
completed further education (35% had diplomas).It is not known how accurately
these samples reflect the national picture of educational attainment amongst
people with HIV, although previous research amongst gay and bisexual men
suggests that this sample matches the distribution of educational attainment
found in that study.
A third of respondents were in paid employment, the vast
majority (76.9%) working full-time. People in work were more likely to be
younger gay men living in London.
Adherence - who needs most help?
· Non-adherence to therapy is mainly due to forgetfulness,
the study found.
· Adherence is unrelated to the number of medications ,
pills or daily doses
· Lack of knowledge of the link between adherence and
viral resistance was significantly associated with missing doses
· Adherence
improves with age: 55% of those under 30 had missed a dose in the previous month
compared with 45% of those over 490 and 40% of those over 50.
· Black
Africans were more likely to have missed doses in the previous month (62.8%)
than others (48%).
· Those living with a partner were less likely to miss a
dose than those living alone (44% vs 56%)
· Those in paid employment were
less likely to have missed a dose in the previous month than those not
working.
No other characteristics (including educational level, side
effects, injecting drug use etc) had a significant association with adherence
patterns.
What support is being given when people start
therapy?
Whilst most people reported that someone had talked to them
about how to take the pills when they started combination therapy (88%), only
half of those taking combination therapy discussed therapy in the context of
their everyday life when they started treatment. Nearly 30% were given no
written information when they started treatment. Only 42% received all three
interventions when starting therapy.
Respondents identified health care professionals as most
helpful in learning how to take combination therapy; only friends and family
(11.8%) and NAM (6.6%) figured significantly as non-medical sources of advice
and information on how and when to take medication. Strikingly, despite their
key role in dispensing medication, pharmacists were named by only 6% of
respondents as `most helpful' in learning about therapy.
Where are people getting treatment
information?
Unsurprisingly, the majority of people identify health care
professionals, particularly their doctor, as the most important source of
information. 29.9% named their doctor as the single most helpful source.
However, NAM's treatment publications were singled out as the single most
helpful source of information by 23.3% of respondents, and when respondents were
asked to name the three most helpful sources of treatment information, there was
little difference in the proportion who cited their doctors (49.9%) or NAM
(47%).
The five most commonly used information sources are doctors,
NAM, Body Positive, friends and family, and the Internet.
The survey also found that specialist organisations targeted
at specific communities and generic AIDS organisations providing a wide range of
services were not seen by respondents as key sources of treatment information.
NAM was named as the most helpful information source by gay men, injecting drug
users, women, haemophiliacs and Africans, despite the existence of targeted
services or publications for each group.
What information do people want?
76.5% of respondents were satisfied with what they knew
about treatments: 92% of respondents indicated that they understood the main
reason why resistance occurs, and 71% knew that resistance to one drug might
lead to resistance to another drug.
55% wanted to learn more, with the overwhelming demand for
information on current treatment options and side effects. Keenness to learn
more was especially strong among Black Africans, who were less likely to
indicate that they knew about viral resistance or cross-resistance.
Use of medical services and voluntary services
Respondents were, in general, satisfied with the service
they received at clinics. The median time spent with a doctor during a clinic
visit was 30 minutes, and half of those on therapy visited their clinic at least
once a month. The overwhelming majority of people (97%) had informed their GPs
of their HIV status, and 57% had visited their GP in the past six months.
Specialist organisations were less frequently used. Only 41%
of Africans had used an African-specific agency, only 17% of gay men had ever
used a gay-specific agency, and only 14% of all respondents had used a helpline
of any sort.