Implementing community-based Dried Blood Spot (DBS) testing for HIV and hepatitis C: a qualitative analysis of key facilitators and ongoing challenges

Canada has joined global efforts to eliminate human immunodeficiency virus (HIV) and hepatitis C virus (HCV) as public health threats by 2030 [1, 2]. However, an estimated 13% of Canadians living with HIV and approximately 44% of Canadians living with chronic HCV are unaware of their infection [3, 4]. While there has been a general decrease in HIV incidence in Canada among gay, bisexual, and other men who have sex with men (gbMSM), particularly since Health Canada’s approval of pre-exposure prophylaxis (PrEP), gbMSM continue to represent the largest proportion of all new adult HIV cases (39.7%) [5]. With respect to HCV, HIV-negative gbMSM have a slightly higher prevalence of HCV and gbMSM living with HIV have a significantly higher prevalence when compared to the Canadian population [6, 7]. Consequently, HIV and HCV epidemics persist in Canada, with both viruses disproportionately affecting gbMSM.

Testing is an essential step in HIV and HCV care, facilitating diagnosis, linkage to treatment, and viral suppression (HIV) or elimination (HCV). In Canada, a variety of testing modalities exist across provincial health jurisdictions. Novel testing modalities can address known barriers to phlebotomy and/or clinic-based testing, such as stigma, discrimination, and inaccessibility (e.g., distance to clinic, wait times) [8]. For example, to reduce the test result wait time required in traditional phlebotomy, in 2005 Health Canada approved an HIV point-of-care testing (POCT) device, where results are returned minutes after the test is conducted [9]. Peer-based methods and testing that occurs outside clinical settings have also been explored, such as community-based POC HCV testing for people who inject drugs [10], at-home HIV or HCV self-testing kits [11], and dried blood spot (DBS) sampling, which involves the collection of blood on filter paper via a finger prick, which is then air dried prior to being transported and screened [12]. DBS sampling can be conducted by non-healthcare professionals and in non-clinical settings [13].

While HIV and HCV testing methods have expanded, “second generation” bio-behavioural surveillance methods have also been introduced to understand better the needs of key populations, such as gay, bisexual, trans, queer men and Two-Spirit and non-binary people (GBT2Q). Sex Now is a national periodic behavioural surveillance survey with deep community roots conducted by the Community-Based Research Centre (CBRC) to promote the health and wellness of GBT2Q [14, 15].

In 2018, Sex Now was conducted by the CBRC at 15 Lesbian, Gay, Bisexual, Trans, Queer and Two-Spirit (LGBTQ2 +) Pride festivals in six provinces across Canada from June to September of 2018. GBT2Q aged 15 years or older and living in Canada were invited to complete anonymous paper-and-pen health surveys in English or French. One of the primary objectives of Sex Now 2018 was to understand the proportion of the GBT2Q community with undiagnosed HIV/HCV, helping to inform public health policy. Thus, all Sex Now respondents (regardless of HIV/HCV status) who were at least 18 years of age could also optionally provide DBS samples for serological HIV and HCV testing. While DBS testing was not confirmatory (e.g., if a DBS sample was reactive, additional testing was required to provide a formal diagnosis), it was the preferred testing method for Sex Now 2018 because it could be conducted by non-healthcare professionals and required less equipment and space to collect and store specimens than phlebotomy. Furthermore, DBS collection was less resource- and time-intensive than POCT as it did not require the provision of on-the-spot results or counselling in the event of a reactive test.

For each Pride festival location, the CBRC worked with and provided funding to local community-based partner organizations who identified a primary site coordinator responsible for managing Sex Now 2018 data collection at their community events. Each site was provided target recruitment numbers for DBS sampling, and each site coordinator was responsible for recruiting and training volunteers. On the day(s) of each Pride event, DBS collectors, which included available CBRC research staff, site coordinators, and volunteers, assisted with the collection of Sex Now 2018 surveys and DBS samples. Notably, the majority of DBS collectors were “peers” (GBT2Q-identified) and were not healthcare professionals, which aligns with calls for peer-based work and responses.

At each event, after completing the Sex Now survey, respondents optionally lined up to provide DBS samples. Sex Now respondents were either paired one-on-one with DBS collectors or they could also choose to self-collect their sample. Sex Now respondents who wished to receive the results of their HIV/HCV screening tests were asked to provide contact information (phone number or email) for CBRC staff to follow-up via e-mail, telephone, or text message. Sex Now respondents were informed that results were not diagnostic, that confirmatory testing should be sought through local public health mechanisms, and that receipt of results could take at least two months from the time of collection. Referrals to local sexually transmitted and blood-borne infection (STBBI) testing options were provided to all interested Sex Now respondents. DBS collection cards were batch-shipped at the end of each Pride festival to the Public Health Agency of Canada National Laboratory for HIV Reference Services for screening. A CBRC staff member returned all results concordant with Sex Now respondents’ self-reported HIV and/or HCV status through text message or e-mail. All discordant results were returned via telephone, and locally relevant information on appropriate confirmatory testing services were provided to support linkage to diagnosis and care.

Despite second generation surveillance of GBT2Q in Canada historically using DBS to screen for HIV, HCV, and syphilis, there is no published qualitative research evaluating the implementation of DBS sampling for GBT2Q in North American community settings. [16, 17]. Previous research such as the study by Prinsenberg et al., however, have found that at-home DBS self-collection for HCV detection was feasible for gbMSM [18]. There is also minimal data evaluating the collection of DBS samples by non-healthcare professionals. Outside of Canada, Belza et al. and Sikombe et al. found that non-healthcare professionals could be effectively trained to conduct DBS testing, but in one study DBS samples were collected under direct supervision, and both studies provided little qualitative data related to the sample collection process [19, 20]. Finally, the implementation of DBS sampling in community settings, particularly those with a large GBT2Q attendance, has not been evaluated. In a brief letter, Flavell et al. described piloting DBS testing at Birmingham Pride in 2013 and reported that DBS sampling was feasible and acceptable in this community setting but provided few details about the implementation [21]. As GBT2Q continue to represent the key population with the most new HIV cases in Canada, and that many people in Canada who are living with HIV and HCV are unaware of their respective infection(s), the implementation of testing methods in settings that may increase accessibility should be evaluated [5]. Furthermore, given that DBS testing only requires a small blood sample and simple storage and shipping requirements, the effectiveness of DBS testing in community settings where space and/or specialized equipment may be limited should be explored [22]. Thus, this study aimed to evaluate the collection of DBS samples among those carrying out DBS screening and other protocol activities at 2018 Pride Festivals across Canada, identifying key facilitators and ongoing challenges to implementing community-based DBS sampling for HIV/HCV testing and returning of results among GBT2Q.

We draw on in-depth, semi-structured interviews with individuals involved with DBS collection and other protocol activities for Sex Now 2018. We used stratified, purposive sampling to recruit potential participants from various implementation sites and roles, including research staff, site coordinators, and volunteer DBS collectors. Eligible individuals had participated in developing research protocols, collecting DBS samples, or returning results as part of Sex Now 2018, and were able to complete an interview in English. A research staff member not connected to Sex Now 2018 sent a recruitment e-mail to all local site coordinators who were invited to participate and encouraged to forward the e-mail to any eligible participants. Interviewees were offered a $25 CAD honorarium. Ethics approval was provided by the University of Victoria and the University of British Columbia research ethics boards (BC17-487).

Participants provided verbal informed consent prior to data collection. Two trained research assistants, including the first author, conducted approximately 1-h, one-on-one interviews via telephone or in-person from August to October 2019. The second, seventh, and eighth authors used the Consolidated Framework for Implementation Research (CFIR) to develop an initial semi-structured interview guide, with feedback from all co-authors; the CFIR was chosen because it provides a consistent and comprehensive framework that could be easily customized for this study [23]. Interviewees were asked about their knowledge and beliefs about DBS screening for HIV/HCV, implementing the DBS protocol, and their reflections on what worked well and lessons learned. Those who identified as research staff or site coordinators were also asked about their role in developing the DBS protocol.

Interviews were completed until no new themes emerged, indicating data saturation had been reached. Interviews were audio-recorded, transcribed verbatim, and anonymized by the first author. We used both inductive and deductive techniques to conduct coding. Transcripts were first open coded by the first author to inductively identify ideas relevant to DBS implementation. The first author then deductively coded the data using the five CFIR domains (e.g., Intervention Characteristics, Outer Setting, Inner Setting, Characteristics of Individuals, and Process) and relevant constructs within each domain (e.g., Relative Advantage, Knowledge and Beliefs about the Intervention) as a coding framework. Reliability was assessed through intercoder agreement with the second and third authors. Data were analyzed using NVivo by the first author. All co-authors provided extensive feedback during the development of the manuscript, and all methods were performed in accordance with relevant guidelines and regulations (Declaration of Helsinki, Canadian Tri-Council Research Ethics guidelines).

We interviewed sixteen participants, including eight site coordinators, five volunteers, and three CBRC staff. 5/16 interviewees were involved with DBS implementation in Ontario, 3/16 in Alberta, 2/16 in British Columbia, Nova Scotia, and across multiple sites, and 1/16 in Quebec and Manitoba; CBRC staff were typically involved with implementation at multiple sites. Additionally, sites implemented the intervention over varying time periods (e.g., one day, three days). Where relevant, site-specific findings from the interviews are provided. Results are organized by the five CFIR domains, accompanied by supporting interviewee quotations and the interviewee’s role in Table 1.

Our study found that DBS screening at Pride for HIV/HCV was a low barrier and relatively straightforward sampling method for DBS collectors with and without formal healthcare training to implement. Furthermore, interviewees felt that DBS sampling was an efficient and cost-effective way to screen large numbers of Sex Now respondents quickly, although some Sex Now respondents voiced to interviewees that they would have preferred to receive the results of their tests immediately. Our findings also highlighted that community and peer-based research that informs public health policy was a key engagement strategy for many Sex Now respondents.

There is limited comparable literature on DBS sampling in community settings. Similar published studies often focus on quantitative results (e.g., assessing HIV or HCV prevalence or incidence), or on qualitative results such as willingness to complete at-home HIV testing using DBS [20, 24‐27]. Our findings align well with a study by Saludes et al. that found that DBS testing for HCV was easily implemented in a community setting [27], and with Belza et al. and Sikombe et al., who both reported that non-healthcare professionals could be effectively trained to conduct DBS testing [19, 20]. None of these studies, however, discussed challenges and facilitators to DBS implementation in as rich detail as our current study.

Our findings may help future organizers of community DBS sampling anticipate facilitators and challenges to implementation, especially when recruiting GBT2Q at Pride festivals or similar large events. For example, the staggered nature of Pride weekends across Canada allowed for lessons learned to be applied to subsequent collection events. Implementing DBS collection over multiple days helped alleviate strain on staff and volunteers and also helped to increase recruitment numbers. While self-collection was rarely used, uptake may be improved by providing additional space and designating a DBS trainer to that space to improve accessibility. This could allow the trainer to offer instructions to multiple participants simultaneously thereby increasing the collection rate.

Our findings also highlight the significant impact that weather had on DBS testing; cold and rainy weather hampered recruitment as well as the speed of blood drop formation, highlighting how an indoor setting away from the elements can be a helpful alternative for events that typically take place outside. Additionally, while the study findings support the peer-based use of non-healthcare professionals for DBS collection, interviewees repeatedly highlighted the importance of designating adequate resources to monitoring protocol adherence. DBS collection training could be further reinforced by having an experienced DBS collector review the collection protocol with peers ahead of their shift, helping to prevent deviations from protocol.

With respect to the returning of results, survey quality, manual data entry, and the complexity of returning multiple screening results led to lengthy delays; lab processing issues were not a significant factor. Thus, if screening results will be provided when implementing community DBS sampling in a busy setting such as Pride, our findings highlight the need to establish a comprehensive plan for collecting data and returning results ahead of time; respondent contact information should be collected electronically where possible to avoid issues with legibility and data entry. Furthermore, the plan for returning results should consider respondent’s preferred method of contact (e.g., telephone, text, email), whether each of the test results (e.g., HIV, HCV) are concordant with the respondent’s self-reported status, and what will be communicated if one or multiple test results are indeterminate (e.g., due to technical issues or because not enough blood was collected). Where possible, alternative testing methods such as POCT should be offered so that people who would like to receive their results immediately are able to. This, however, requires trained staff who are able to provide follow-up counselling and linkage to care.

As for DBS collection at Pride events, some interviewees felt that it helped to normalize testing for STBBIs. Given that significant stigma towards HIV/HCV prevents some GBT2Q from getting tested in the first place, STBBI screening at large community events may have the potential to help undo this stigma [28]. The ethical implications of someone being diagnosed via DBS screening at a community event such as Pride, however, are significant. Some individuals who complete HIV/HCV screening at Pride may not be as prepared to receive a reactive screening result. A detailed plan for supporting individuals with reactive results is highly recommended. Our findings also reinforce the importance of being aware of and actively preventing exclusionary practices, such as the inadvertent deterrence of some individuals living with HIV from the Sex Now 2018 study. They also suggest, however, that many GBT2Q, including those living with HIV, may not be aware of or perceive HCV as a significant risk.

While Pride is a unique and well-situated setting to implement social-justice oriented and community-based interventions, the types of people who are able to attend Pride and who do attend Pride are not typically representative of the general GBT2Q community (e.g., they are often older, have a higher income, a greater number of sex partners, use more alcohol/substances, and test for HIV more) [29, 30]. Thus, while DBS in this setting can increase access to testing, GBT2Q who are the hardest to reach may still not be reached through DBS sampling at Pride [31]. Finally, our findings may also be applicable for organizers that want to implement community-based DBS testing for other key populations that are affected by HIV and/or HCV. These organizations may also consider mobilizing community through policy-oriented research that directly impacts them. By addressing an issue that the community prioritizes, engagement with the intervention may be more likely to be successful.

Our study has many strengths; it is the first evaluation of community-based DBS implementation for GBT2Q in Canada. Our findings are from a national sample of interviewees representing a diversity of implementation roles (e.g., CBRC staff, site coordinators, volunteers). Additionally, the use of CFIR, an established framework for implementation research, provided a common and consistently used set of constructs to evaluate the intervention. With respect to study limitations, the timing of the interviews (over a year after the intervention) may have impacted the amount of detail interviewees could remember. As individual DBS collectors could opt-in to participating in this study, selection bias may be present and those who had a poor experience with implementing DBS with Sex Now 2018 may have chosen not to participate in the interviews. Of note, Sex Now 2018 recruited survey respondents using language pertaining to contributing evidence towards ending the discriminatory blood deferral policy for men who have sex with men, which may affect this intervention of DBS sampling for HIV and HCV screening in other contexts or populations. Further, we interviewed a relatively small sample size for this qualitative sub-study, and notably, the perspectives of Sex Now respondents on DBS collection (including self-collection) at Pride are not present in this analysis as we did not have consent to re-contact Sex Now respondents who provided DBS samples for participation in our study. We also did not interview any people at the laboratory where HIV and HCV analysis took place and where sample quality was assessed. These perspectives are important to examine in future research on the implementation of such interventions. Finally, given recent approvals in Canada of non-healthcare professional administered POC rapid HIV testing and rapid HIV self-testing, future research should examine these testing technologies in large community-based venues.

This study provides significant insight into key facilitators and ongoing challenges that affect the implementation of community- and peer-based DBS testing and provision of respondent results among GBT2Q. As Canada continues with its goal to eliminate HIV and HCV as public health threats by 2030, innovative screening methods that increase access to testing are needed. DBS sampling is a proven alternative to phlebotomy and POCT, especially in community settings and/or settings where people may not want their test results immediately. Both HIV and HCV continue to disproportionately impact gbMSM living in Canada, highlighting the continued need for GBT2Q-related HIV and HCV research and interventions [5, 6]. Future studies that continue to investigate the implementation of innovative HIV and/or HCV testing methods will allow for better access to testing, increased linkage to care, and ultimately, the elimination of these public health epidemics.