Abstract
Background: People living with HIV (PLWH) have a compromised immune system, which increases their risk for developing AIDS-defining cancers (ADC; i.e., Kaposi sarcoma, non-Hodgkin lymphoma, cervical cancer) and non-AIDS-defining cancers (NADC; i.e., anal, liver, lung, oral, vaginal, and vulvar cancers). Although evidence- based prevention practices (EBPPs) such as smoking cessation, vaccination (hepatitis B, human papillomavirus), and screening tests (cervical, lung) can reduce ADC and NADC risk across the cancer continuum, disease burden persists among PLWH. Community-based HIV/AIDS service organizations (ASOs) are an ideal setting in which to adopt, implement, and maintain EBPPs because they are able to reach marginalized PLWH who may not be engaged in HIV care due to a complex array of healthcare access barriers such homeless, substance use (also a risk factor for some NADCs), etc. Unfortunately, health risk and healthcare access barriers among PLWH have likely been exacerbated during the COVID-19 pandemic. Objective: To describe barriers and facilitators to recruiting female ASO clients to participate in a cross- sectional study during a pandemic. Methods: We used the Texas Department of State Health Services (DSHS) list of HIV/STD Service Providers (n = 147, last updated on 6/18/2020) and the CDC National Prevention Information Network HIV/AIDS Service Finder (n = 642 on 8/2/2020) to create a list of ASOs located in Texas (n = 789). HHS (hiv.gov) and HRSA (hab.hiv.gov) data sources were not used because statewide searches were not an option or could only be done within a 100-mile radius. ASOs that did not have an email address (N = 657 / 789, 83%) were excluded. The Dillman Tailored Design Method for online surveys was used to send up to five recruitment emails to 132 of 789 (17%) ASOs over a four-week period in July/August 2020. A content analysis approach was used to categorize various types of non- response. Results: According information on the Texas DSHS website (last updated 6/23/2020), 24% (n = 35 / 147) of ASOs remained open, while more than half (60%; n = 88 / 147) were open with limitations during COVID-19. Phone, website, and Facebook were the preferred contact methods during the pandemic (none provided an email address). Of the 132 of 789 total (147 Texas DSHS + 642 CDC NPIN) that we attempted to recruit via email, only 6 individuals (5%; n = 6 / 132) had responded as of 8/3/2020. Most were non-responders (71%; n = 94 / 132). Other types of non- response included 22% undeliverable (n = 29 / 132) and delivery was delayed for 2% (n = 3 / 102). Conclusions: Although we used the Dillman method for online surveys, our response rate was very dismal. Since many ASOs were affected by COVID-19, it is reasonable to assume that our low response rate was attributed in part to the pandemic. Our recruitment experience underscores the importance of building strong community partnerships and contextualizing non-response to online surveys, especially during a pandemic when in-person data collection activities may not be feasible.
Citation Format: Lisa T. Wigfall. Barriers and facilitators to recruiting research study participants from community-based HIV/AIDS service organizations: Lessons learned during the COVID-19 pandemic [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PO-075.