2002 Title II Survey
for People Living with HIV and AIDS in Oregon

• Complete Report (pdf)
• Executive Summary Only (pdf)

The Survey

In 2002, the HIV Client Services Program and the Oregon HIV Care Coalition asked Program Design and Evaluation Services (PDES) to design and implement a survey to answer the following questions:

1) What are the service needs, gaps and barriers to care for people living with HIV and AIDS (PLWH/A) in Oregon?
2) How do the needs, gaps and barriers vary by region, race/ethnicity, and gender?
3) What do quality of life indicators look like for Oregon's PLWH/A?
4) What level of satisfaction do PLWH/A have with HIV case management services?

In November 2002 through January 2003, surveys were distributed to 917 PLWH/A in Oregon receiving Ryan White case management services - 391 in the Eligible Metropolitan Area (EMA) and 526 in the non-EMA. They were distributed to clients through their Ryan White case managers.

The Results

Results of this study suggest that the Ryan White system of care is doing a good job of ensuring care for PLWH/A in Oregon, particularly for core services such as health care, case management, HIV medications, and health insurance. Some core services, such as dental care, have service gaps and barriers to care that must be addressed.

Participant Characteristics: The majority of survey respondents lived in the EMA (61%). Most were male (83%), although the non-EMA had a larger proportion of female respondents than did the EMA. Over three-quarters of respondents were White (78%). The non-EMA had a larger proportion of White respondents than the EMA, while the EMA had a larger proportion of African American respondents.

Health: Almost three-quarters (70%) had been diagnosed with HIV five years ago or more. Only 5% had been diagnosed less than a year ago. Over half (57%) had an AIDS diagnosis.

Substance Use: Almost one in three respondents (32%) were using illicit substances in the past year, and most (78%) of those using illicit substances also had co-occurring mental health issues.

Mental Health: Almost three-quarters of respondents (77%) were dealing with mental health problems in the past year.

Medication Adherence: Seventy-nine percent (79%) of the respondents were currently taking HIV medication. Of those, 7% had missed five or more times in the last 30 days. Another 12% said they had stopped taking their medications altogether. The most frequently cited reason for missing medication in the last 30 days was forgetting to take it (61%).

Service Needs, Gaps and Barriers: Respondents were asked if they needed 24 specific services in the past 12 months, and whether they always received the services when they needed them (those who had not were considered to have a service "gap"). Respondents reported good access to medical care and HIV medications, but they were heavily dependent on public insurance (e.g., Oregon Health Plan).

The top five 'most needed' services were:

• outpatient medical care (needed by 94% during the past year),
• health insurance (85%),
• case management (84%),
• dental care (78%), and
• drug reimbursement (67%).

Gaps were most frequently mentioned for dental care (needed but not received by 39% in the past year), emergency rent/utilities (28%), groceries or meals (27%), case management (25%) and housing (24%). A higher proportion of those within the EMA reported a gap for case management than outside the EMA. Almost all respondents had access to medical care in the past year if they needed it (84%).

Case Management Satisfaction: Eighty-two percent (82%) of those receiving case management services rated them as excellent or good. Respondents with more case management contacts were more likely to be satisfied. Those respondents who were further along the disease progression were less likely to be satisfied (e.g. those who were symptomatic or had an AIDS diagnosis). Satisfaction was consistently higher outside the EMA.

Quality of Life: On average, respondents rated their overall quality of life as 60 on a 1 -to- 100 scale. When asked about eight specific dimensions for quality of life, they felt worse about financial worries (average score of 33) and best about trusting their clinical provider (average score of 82).

HIV Prevention: Of those with casual sex-partners (38%), four in ten were not disclosing their HIV status to all of those partners. One in three reported infrequent condom use with their casual partners.

The Executive Summary and the Final Report are available by contacting Susan Van't Hof, Project Coordinator, Department of Human Services, Health Services, Program Design and Evaluation Services, 800 NE Oregon Street, Suite 550, Portland, OR 97232 or call toll-free at 1-877-554-3640.