Bridging the Gap: Conference Record [Abstract book, International Conference on AIDS (12th: 1998: Geneva, Switzerland)]

12th World AIDS Conference

Abstracts 12448-12452 103

taking medication for PCP prophylaxis, 31% reported taking two-drug combination anti-retroviral therapy, and 11% reported taking a Protease Inhibitor. Forty-six
per cent of respondents did not report even one HIV primary care encounter over
the three month period immediately prior to the survey.
Conclusion: Although HIV infected drug users often have substantial health
care needs, and are many do not have an identifiable provider of primary care.
There is a density of persons with known HIV living in congregate SRO hotel
settings who remain unconnected to ongoing health care services. Since PCP
is still the most frequent cause of HIV morbidity and mortality, the SRO resident population, with their low utilization of prophylaxis, are at higher risk for
hospitalization and death resulting from this avoidable opportunistic infection.
Existing care delivery systems have been underutilized or utilized inefficiently for
all concerned.
Lessons Learned: The CitiWide SRO Needle Exchange Program has demonstrated its capacity to not only reach and engage infected and high risk individuals
in harm reduction associated with syringe practices, it has established itself as
a strategic site for understanding and meeting multiple health and HIV related
needs of a population that mostly falls through the crack.
112448 State of HIV treatment information in Japan - From the
survey on information needs of SHIP clients
Yoji Inoue1, Chihiro Wakabayashi2. 1Japanese AIDS Foundation, Ship, 2-12-9
#302, Chuo, Nakano-Ku, Tokyo; 2Tokyo University Ship Tokyo, Japan
Objective: To identify features of HIV information state as well as to find out
evaluation for these information by HIV/AIDS patients and HIV/AIDS medical
staffs.
Subjects and Methods: 318 clients who are registered for the SHIP NEWSLETTER (the only newsletter dealing HIV treatment information for HIV positive persons in Japan) mailing subscription received questionnaire sheets by mail to
complete for themselves anonymously. The survey was conducted from June to
July 1997 and 171 clients responded (53.8%) by mail. Out of respondents, 49
(28.7%) were HIV positive, 52 (30.4%) were staffs of HIV medical teams. Here
we analyzed the results on these 'HIV positive persons' and 'HIV medical staffs',
so as to identify the state of HIV treatment information as well as the differences
of each other.
Results: Approximately 50% of HIV positive persons receive information from
other HIV positive persons, and they rate these information high both in the
meaning of trustworthy and usefulness. Compare to HIV medical staffs, HIV
positive persons think of information from the Ministry of Welfare in Japan and
pharmaceutical companies as unreliable and useless.
Conclusion: HIV medical staffs utilize NGOs and the Ministry of Welfare in
Japan as information sources, aside from doctors and medical journals. But few
of them receive indispensable information of clinical technique for the treatment
of HIV patients from these sources. It is noteworthy that Japanese PWA/H's
information network plays important role in their health management. Further
survey for the state of the information is needed.
112449 Neurological and psychiatric disorders in HIV-positive
individuals - The subjective perception
Hans-Josef Linkens, P. Wiebner, K. Lemmen. Deutsche AIDS-Hilfe E. V
Dieffenbachstr. 33, Berlin, Germany
Objectives: There are inconsistent estimations whether or not the new treatment
options increase or decrease the the problem of neurological and psychiatric
disorders in people with HIV/AIDS. We wanted to gain aspects of the subjective insight into the problems of people directly and indirectly affected by those
problems.
Design: We performed qualitative interviews in a half-open structur with those
who are directly and indirectly affected by neurological and psychiatric disorders
of people living with HIV and AIDS.
Method: We interviewed persons about the following topics: personal relationship to the item; course of the illness; problems in living with neurological
and psychiatric disorders; knowledge about the course of the illness and care
of affected people; The people interviewed could answer open questions and
without instructions.
Results: We performed 13 interviews, 6 persons were directly and 7 indirectly
affected by neurological and psychiatric disorders through the course of the
HIV-infection. The cause of the disorders were HIV-encephalopathy (3 persons),
PML (2 persons), toxoplasmosis (3 persons), panic attack or attempted suicide
(2 persons), not mentioned (3 persons). The problems identified through the
interviews were A) the reaction in the behaviour of the people directly affected:
It was individually different and ranged from supression, denial and isolation to
acceptance and mobilisation of resources. B) coping with the day-to-day-life:
This capacity was very frequently restricted. People affected were under strain
due to the dependence on other individuals and due to the loss of control. C)
Relationship towards a person taking over responsibility: The dependence on
another individual was in some cases associated with apportioning of blame and

self-accusation of indirectly affected persons. Helplessness and isolation were
keysymptoms of people affected directly and indirectly.
Conclusion: Despite the new treatment options in the field of HIV/AIDS the
subjects regarded neurological and psychiatric disorders as a big threat. The
subjective perception revealed very specific problems of people affected by
neurological and psychiatric disorders. Adequate continuing education needs to
address these problems and the availibility of emergency measures.

S12450 French national study "Life with treatments from the
patients' perspective"
David Bertholon. Aides 23 Rue Chateau Landon, 75101 Paris, France
Objectives: To study the point of view of the persons taking treatment regarding
benefits and impact of treatment in daily life.
Design and Methodology: The survey was conducted between 1st june and
15th july 1997 with a self-administrated questionnaire in the 102 AIDES Chapters
throughout France. The questionnaire was also included in the june edition of the
quaterly newsletter about treatment issues called Remaides.
Results: 887 questionnaires were collected and analysed. Results are reported
as % of 887: 80% men, 12% drugs users, mean age 37, 65% live alone, 54%
jobless, 54% take antiHIV treatment for more than 2 ys, 70% take IP. Benefits:
81% think treatment is globaly beneficial, 70% efficient on T4 count, 69% on viral
load. Side effects: 81% report some: fatigue (50%), diarrhea (32%), ballonnement
(30%), nausea (29%). Intake: the morning one was pointed as the most difficult
for 26%, before the evening one (23%). Main difficulties: 94% report difficulties:
can not stop (50%), regular intakes (40%), side effects (41%), intake and food
(33%), number of pills (32%).
Conclusions: Although treatments are globaly considered as beneficial, these
data point to original difficulties not often mentioned in clinical or compliance
studies. These impacts must be deeper analysed and discussed to try to find
pratical solutions, facilitate treatments integration in daily life, and maintain people
motivation.
12451 1 Client satisfaction activities and Ryan White CARE act:
Involving people living with HIV and improving systems
of care
Moses Pounds, E. Finkelstein, P. Warfield, J.C. Park. 15600 Fishers Lane,
Room 7A-07 Rockville, Maryland 20857; 2HRSA, Rockville MD; 3National
Assoc. People Living with AIDS, Washington DC, USA
Issue: Developing and disseminating examples of effective methods for conducting HIV/AIDS-related client satisfaction activities that involve people living
with HIV, are linked to clinical outcome measures and whose results are used to
improve the service delivery system.
Project: Ryan White CARE Act grantees (which included 429 state and local
health agencies, hospitals, outpatient clinics, dental schools, and providers of
support services) were surveyed by mail about their client satisfaction evaluation activities (48% responded). The information collected included: evaluation
methods, sample size, response rate, involvement of people living with HIV,
barriers to conducting client satisfaction activities, results, and changes made to
the health care system as a result of the findings. Profiles of each respondent
were developed from the survey data and analyzed. Six case studies were selected for in-depth investigation and used in developing technical assistance and
dissemination materials.
Results: Even though client satisfaction activities are not required, 63% of
grantees conducted client satisfaction themselves; 10% required their contractors
to conduct client satisfaction assessment activities.
Methods included: self-administered surveys, interviews, and focus groups.
The involvement of people living with HIV ranged from no involvement to comprehensive involvement. Most common changes based on the results included:
changing clinic operation and procedures, adding or co-locating enabling services,
accommodating alternative therapies, offering multi-lingual treatment information
and access to multilingual skills. Barriers to client satisfaction activities were the
lack of funding and scarce local expertise as well as the lack of awareness of
their value to improving medical services.
Lessons Learned: Service providers need specific funds and technical assistance to design and implement client satisfaction activities. Linking client
satisfaction to clinical outcome measures adds value to client satisfaction findings. The contributions of people living with HIV are essential for developing
effective and relevant services. Local and State planning bodies need to pay
more attention to client satisfaction when improving their care delivery system.
S12452 | Patient perspective of clinical disease and care in a
cohort of people with HIV/AIDS antiretrovirals therapies
naives
Maria Stella Aloisi1, E. Girardi, M. Carballo2, A. D'Arminio Monforte3, C. Arici4,
G. Ippolito1. 1Centro Rifer AIDS-lrccs OSP L.Spallanzani via Portuense
292-00149 Roma; 3Clinica Malattie INF Ospedali-Riuniti Bergamo; 4Divisione
Malattie Inf Ospedali-Riuniti, Bergamo, Italy; 2lnternational centre for Migration
health Geneva, Switzerland
Objective: To determine patient perspective of health, clinical disease and care
also in relation to the news antiretroviral therapies and to correlate these data
with clinical and biological course of the infection.
Design: Multicentre study nested within a cohort study on the natural history
of HIV infection.

Methods: The study is carried out in 54 hospital units of Infectious diseases
in Italy. Persons with HIV infection naive to antiretrovirals therapies consecutively
observed in participating centres are enrolled in the study. A self-administered,
coded questionnaire is distributed to study participants.
Results: A total of 948 persons (30% F-70% M) completed the questionnaire
in 36 clinical centres between June 30 and November 30, 1997. Their health was
described as good or fair by 69% and only 21% of patients reported that their