Satisfaction with medical care among HIV-infected women in rural California

1. Satisfaction with medical care among HIV-infected women in rural California Erin MoixGrieb, MA, Clea Sarnquist, DrPH, MPH, Yvonne Maldonado, MD Stanford University

2. Presenter Disclosures: CleaSarnquist No relationships to disclose The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months:

3. 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.

4. Objectives For this population of HIV-infected women in rural areas of California: • Evaluate satisfaction with medical care, • Evaluate quality of life, and • Discuss solutions for improvements.

5. 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 Analysis • Frequencies

6. Results: Race/Ethnicity

7. 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

8. Results: Route of Infection

9. 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

10. Results: Satisfaction with Care • 96.9% rated services at their facility as ‘good’ or better. • 89.1% would ‘definitely’ recommend their facility to friends

11. 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.

12. 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.

13. 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

14. 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)

15. Quality of care: CD4 Counts & Viral Load Testing • 85.9% had a CD4 and viral load test within the past 6 months (guidelines are every 3-6 months) CD4 Counts Viral Loads • 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

16. Quality of Care: Screening and Immunizations Screenings 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%

17. Quality of Life: Adherence • 8.8% reported missing a dose in the last 48 hours • 18.6% reported missing a dose in last 30 days • For optimal health, adherence needs to be >=95% of medications

18. Barriers to Care/Unmet needs • Understanding barriers to care may help clarify both satisfaction with care and quality of life.

19. Results: Barriers to Care

20. Results: Unmet service needs

21. Limitations • Likely biased sample: • Low response rate (24.7%) • Recruitment procedures likely a major cause • Opt-in approach probably selected for healthier individuals • Recall bias • Only looked at in-care women. • No multivariable analysis due to small sample size. • Incomplete medical charts. • Defining ‘rurality’ difficult.

22. 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 maynot understand treatment needs of women.

23. 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

24. 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.

25. 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.

26. 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.

27. 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

28. 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 basisto understand needs and shortcomings.

29. Acknowledgements • Stanford University interview team: • Helen Hwang, MPH, Ariadna Gomez, MBA, Alma Gonzalez, MPH, SalimaMutima, MD, MPH, and Neal Patel. • Survey assistance: Shayna Cunningham, PhD • Facilities & subjects for their participation • For further information, please contact: CleaSarnquist: cleas@stanford.edu