Screening rates
In Community A the cervical cancer screening rate (Pap smear or HPV testing as screen) increased by 15.2 % during the 2 years of the study. This is statistically and, we believe, clinically significant. In Community B the rate increased by only 2.9 % during the study period. This suggests that the availability of self-collection in Community A did improve cervical cancer screening rates beyond the effect of simply having an intense educational and media campaign.
Despite a comparable screening rate of 45 % in 2006, Community C had a screening rate of 72 % in the two years prior to the study, and the screening rate increased by 8.5 % (
p < 0.001) during the study period. Our study was conducted during a period of time when awareness of the low cervical cancer screening rate was increasing. The overall proportion of women considered adequately screened in the province rose from 68.2 % during 2006–2008 to 74.4 % during 2009–2011, changing NL from a province with one of the lowest participation rates in the country to among the highest in just 3 years [
30,
31]. The provincial Cervical Screening Initiatives educational and promotional campaigns continued in all three communities. Through personal communications with a senior physician in the area, we also learned of a nurse practitioner and a young family physician in Community C who both began practicing in the community immediately prior to and during the study period, both of whom were proactive with cervical cancer screening. These confounding factors may be responsible for the unexpected increase in screening rates in our control community.
Response rate
Our uptake rate was relatively low compared to other studies of HPV self-collection programs. Of the 837 kits that were picked up, only 168 (20.1 %) were returned, and only 9.5 % of the eligible population of women participated in HPV self-collection. Researchers in Mexico completed a trial of women from low socioeconomic status and obtained a response rate of 74.6 % [
9]. Another study in rural Mississippi offered under-screened women the opportunity to self-collect for HPV in their homes or to have a pap smear and 64.7 % chose to self-collect for HPV [
32]. In both these studies, however, nurses went directly to participants’ homes and helped them with their sample and paperwork. This type of specialized care would no doubt increase participation rates; however in the general population such intervention is not feasible for each and every woman.
Our objective was to evaluate whether the introduction of self-collected HPV kits alongside traditional Pap smears would increase overall screening in the community. This makes our study more comparable to other screening programs in the country where people are responsible for initiating or completing their own testing. For example, colorectal cancer screening initiatives have participation rates of 23 % in Manitoba (2009/10) [
33] and 27 % in Ontario (2009/10) [
34]. In Newfoundland and Labrador the participation in breast cancer screening was 25.5 % in 2003–04 after 8 years of the program being in place [
35]. These numbers are more comparable with our results.
One also wonders why 669 of the 837 kits that were picked up were not returned. Self-collected HPV testing is thought to overcome many of the barriers to participation in Pap smear screening, including pain and discomfort with pelvic exams, difficulty scheduling appointments, transportation issues, and lack of access to primary care providers, and many studies in the literature report much higher response rates than we observed. In the questionnaires, many of our participants stated that the reason they were under-screened was that they simply, “had not gotten around to [having a Pap smear]” (31.3 %). Perhaps the self-collection kit alleviates the barriers of time and scheduling for some women, but clearly there are still some impediments to wider use of the kits. Another potential barrier was the amount of paperwork involved in the study, which may have deterred some women with lower educational levels to take but not return kits, when they realized the amount of paperwork involved. The kit contained instructions (3 pages), consent forms (6 pages) and questionnaires (3 pages), for a total of 12 pages of documents, which may have been overwhelming or too time-consuming for participants.
The literature suggests that the method by which women are provided with the HPV self-collection kits may affect participation. An Italian study comparing different self-sampling distribution methods found that when kits were mailed directly to women, rather than providing women the option to request a kit, the response rate more than doubled from 8.7 % to 19.6 % [
36]. It seems that direct mailing, rather than ‘on demand’ screening may increase participation. As the bulk of the cost of HPV testing is incurred at the laboratory phase, distributing the relatively inexpensive kits widely may, indeed, be cost efficient. The kits used for our study cost $3 CAD each, with an additional cost of $35 CAD plus technician time for the HPV DNA assay at the time of our study, although costs will vary by jurisdiction and are likely to decrease over time. Distributing self-collected HPV kits directly to women identified as under-screened through cervical screening registries may be an efficient method to utilize this technology, and the results from the study mentioned previously indicate a willingness of these women to participate in this way.
Of the women who completed self-collection, 88.8 % found the process somewhat or very satisfactory. Furthermore, 15.5 % (26) of the women who performed the self-collection were under-screened or unscreened. These women did not attend regular screening in the past, and the self-collection kit provided a method that they were more willing to use.
A discussion of cervical cancer screening would be incomplete without the acknowledgement of the importance of organized cervical screening programs. A systematic review of methods to improve cervical cancer screening has found standard recall letters to be effective at increasing compliance with cervical cancer screening via Pap smear [
33]. Self-collection has been shown in our study and others to be an effective method of increasing screening rates, but we suggest that it would be most effective if used as part of an organized screening program.
Implications for rural communities
Self-collection seems to alleviate some barriers to screening in rural communities, but our study indicates that the rate of uptake may hinder its utility. Self-sampling is fast, women are overwhelmingly able to collect adequate samples, and it can be implemented in communities that have no or very few regular primary care providers. However, our study makes clear the fact that simply providing kits may not sufficiently encourage women to self-collect, and further study of more targeted or direct distribution methods is warranted prior to wider use of this self-collected HPV testing.