SATISFACTION WITH MEDICAL CARE AMONG HIV-INFECTED WOMEN IN RURAL CALIFORNIA

Erin Moix Grieb, MA, Clea Sarnquist, DrPH, MPH, Yvonne Maldonado, MD Stanford University

PRESENTER DISCLOSURES: CLEA SARNQUIST

The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months:

No relationships to disclose

INTRODUCTION AIDS has increased among women nationally:

8% in 1985, 27% in 2006 The HIV epidemic has increasingly spread

throughout rural areas: Only 1 California county does not have currently living

HIV/AIDS cases. Minimal research exists on rural women living

with HIV in the Western U.S. HIV-infected women in rural areas have less

access to care, and may have worse outcomes, than their urban counterparts.

OBJECTIVESFor this population of HIV-infected

women in rural areas of California:

(1) Evaluate satisfaction with medical care,

(2) Evaluate quality of life, and(3) Discuss solutions for improvements.

METHODS Retrospective cohort 11 randomly-selected facilities serving rural areas Face-to-face interviews and medical chart

abstractions Eligibility: HIV-infected, female patients in care

Jan. 1 – Apr. 31, 2007 (4 months) Women asked to confirm they lived in a rural area Response rate: 24.7% (64/259)

Confidentiality requirements limited recruitment efforts

Statistical AnalysisFrequencies

RESULTS: RACE/ETHNICITY

16%

50%

30%

2% 3% Black

White

Latina

Asian

American Indian, Alaska Native

RESULTS: SOCIO-ECONOMIC STATUS Age:

Median 47.5 years Health Insurance:

75% Medicare/Medicaid >90% covered

Marital Status: 84.4% single 15.6% married or with partner

Economic Status: 45% below Federal Poverty level 33% sole providers for minor(s) <18 70% currently unemployed

RESULTS: ROUTE OF INFECTION

79.7%

6.3%

6.3% 7.8%

Heterosexual con-tactNeedle sharingTransfusionsOther/not sure

RESULTS: CO-MORBIDITIES Hepatitis:

26.4% Hep A 7.1% Hep B 22.6% Hep C

Tuberculosis: 10.9%

Mental Health: 56.2% Depression 23.4% Anxiety 14.1% Bipolar disorder 12.5% Other

RESULTS: SATISFACTION WITH CARE

96.9% rated services at their facility as ‘good’ or better.

89.1% would ‘definitely’ recommend their facility to friends

RESULTS: SATISFACTION WITH CARE BUT, only: 28.1% are told in advance most/all of the

time about treatment procedures they should have.

20.4% said staff understood the treatment needs of women most/all of the time.

17.2% said the staff answered their questions most/all of the time.

17.2% reported feeling ‘like an individual with unique needs and concerns’ most/all of the time.

6.2% said staff respected their privacy most/all of the time.

RESULTS: QUALITY OF LIFE 47.5% said their health limited their daily

activities For example, walking several blocks.

Women reported accomplishing less than they would like due to their: physical health (49.2%) and emotional problems (50.8%).

44.3% said they ‘felt so down in the dumps that nothing could cheer them up’ some or most of the time.

QUALITY OF CARE AND LIFE: A GUIDELINES-BASED PERSPECTIVE

Understanding quality of care received, compared to national guidelines, might help explain women’s satisfaction with care and quality of life.

Statistics based on chart-review data

QUALITY OF CARE: ANTIRETROVIRAL (ARV) USE 94% ever took ARVs

89% were taking ARVs at time of interview Half of those not taking ARVs cited high CD4 counts as

reason

Only 20% on combination therapy (ex. Truvada, Combivir, and Trizivir)

QUALITY OF CARE: CD4 COUNTS & VIRAL LOAD TESTING

Initial CD4 counts were 27% <200 and 35% >500.

Most recent CD4 were 5% <200 and 65% >500.

84.4% undetectable at most recent test

CD4 Counts Viral Loads

• 85.9% had a CD4 and viral load test within the past 6 months (guidelines are every 3-6 months)

QUALITY OF CARE: SCREENING AND IMMUNIZATIONS

Hepatitis Hep B: 85.9% Hep C: 79.7%

Tuberculosis: 89.1%

Pap smear: 87.5%

Influenza: 88.9%

Pneumococcus: 84.4%

Hepatitis B: 73.5%

Screenings Immunizations

QUALITY OF LIFE: ADHERENCE

o 8.8% reported missing a dose in the last 48 hours

o 18.6% reported missing a dose in last 30 days

For optimal health, adherence needs to be >=95% of medications

BARRIERS TO CARE/UNMET NEEDS Understanding barriers to care may help

clarify both satisfaction with care and quality of life.

RESULTS: BARRIERS TO CARE

Your physical health has not allowed you to get to the service 32.8%

Transportation 31.2%

Your ability to find your way through the system 25.0%

RESULTS: UNMET SERVICE NEEDS

Service

% unmet need

Assistance in finding a doctor for ongoing medical care 62%

Chore or homemaker services (paid or volunteer) 50%

Assistance in finding shelter or housing 44%Local volunteer support services designed to assist persons with HIV 44%

LIMITATIONS Likely biased sample:

o Low response rate (24.7%)o Recruitment procedures likely a major cause

o Opt-in approach probably selected for healthier individuals

o Recall bias Only looked at in-care women. No multivariable analysis due to small sample

size. Incomplete medical charts. Defining ‘rurality’ difficult.

DISCUSSION: SATISFACTION WITH CARE Despite the majority being satisfied with

their care overall, issues remain:Staff do not respect privacy of patients,Staff unable to answer questions,Patients not informed of needed procedures,Patients do not feel like individuals,Staff may not understand treatment needs of

women.

DISCUSSION: FACTORS RELATED TO SATISFACTION Care quality shortcomings, compared to

national guidelines, may contribute to lower satisfaction: Regular CD4 and viral load testing ARV access and adherence Screenings/IZs, etc.

Barriers to care and service needs may contribute to women reporting poor care or quality of life: Barriers: Physical Health, Transportation Needs: Medical home, Chore assistance, Housing

DISCUSSION: PATIENT RIGHTS Healthcare staff and patients may

benefit from education on patient rights: Right to accurate information,Right to make decisions,Right to confidentiality.

DISCUSSION: DUAL RELATIONSHIPS Healthcare providers may interact with

patients outside of the healthcare setting.

Common in rural areas. Can complicate the patient-provider

interaction:Providers may feel it is acceptable to share

information outside of clinic, Patients may perceive a lack of

confidentiality.

DISCUSSION: PROVIDER KNOWLEDGE, TRAINING, RESOURCES Several reported issues (inability to answer

questions, lack of knowledge about HIV issues in women) speak to lack of training and resources.

Rural practices may only see a few HIV-infected individuals, especially women. Thus, time and resources are minimally expended to

understand such sub-group needs. Even in larger practices, training and

evaluation resources are frequently more limited in rural areas.

RECOMMENDATIONS: PROVIDER SUPPORT AND TRAINING Utilize existing resources such as AIDS Education

and Training Centers (AETCs), partnerships with referral centers, telemedicine, etc.

Ensure that: Providers have training opportunities and are

encouraged to utilize them Training regarding HIV emphasizes privacy issues and

patient rights Adress ‘Dual role’ of physicians in rural settings Example: PAETC’s Perinatal Summit 2011 in Fresno Example: NCCC National Perinatal HIV Hotline and HIV

Clinical Consultation Warmline

RECOMMENDATIONS: PATIENT SUPPORT Education on rights and responsibilities. Mobile clinics. Transportation provision and reimbursement. Electronic reminders: Text messaging, etc. Case managers providing more linkages to

services. Virtual support groups. Assess clients on a regular basis to understand

needs and shortcomings.

ACKNOWLEDGEMENTS Stanford University interview team:

Helen Hwang, MPH, Ariadna Gomez, MBA, Alma Gonzalez, MPH, Salima Mutima, MD, MPH, and Neal Patel.

Survey assistance: Shayna Cunningham, PhD Facilities & subjects for their participation For further information, please contact:

Clea Sarnquist: cleas@stanford.edu