Understanding Patients' Perspectives and Information Needs Following a Positive Home Human Papillomavirus Self-Sampling Kit Result

Abstract

Objective: We explored patient perspectives after a positive human papillomavirus (HPV) self-sampling result to describe experiences and information needs for this home-based screening modality. Materials and Methods: We recruited women who tested high-risk (hr) HPV positive during a pragmatic trial evaluating mailed hrHPV self-sampling kits as an outreach strategy for women overdue for Pap screening in a U.S. integrated health care system. Telephone interviews were conducted from 2014 to 2017. Five independent coders analyzed transcripts using iterative content analysis. Results: Forty-six women (61% of invited; median age 55.5 years) completed a semistructured interview. Six themes emerged: (1) convenience of home-based screening, (2) intense feelings and emotions after receiving positive kit results, (3) importance of seeing provider and discussing kit results, (4) information seeking from various sources, (5) confusion about purpose and meaning of HPV versus Pap tests, and (6) concern that HPV self-sampling is inaccurate when the subsequent Pap test is normal. Conclusions: Although women liked the kit's convenience, discussion about discordant home HPV and inclinic Pap results led them to question the accuracy of HPV self-sampling. Patient-provider communication around home HPV kits is more complex than for reflex or cotesting because clinician-collected Pap results are unknown at the time of the positive kit result. Patients need education about differences between HPV and Pap tests and how they are used for screening and follow-up. To reassure patients and keep them interested in selfsampling, education should be provided at multiple time points during the screening process.

Emotional response to testing positive for human papillomavirus at cervical cancer screening: a mixed method systematic review with meta-analysis

“…'Relief' was also endorsed by 27.4%, 'encouraged' endorsed by 35.9%, and 'in control' endorsed by 68% of HPV-positive women in a descriptive study (Daley et al, 2010). Ten qualitative studies reported positive emotions such as relief, increased trust and acceptance, though they were minor themes (Barrera-Clavijo et al, 2015;Head et al, 2017;Kosenko et al, 2012;Lin et al, 2011;Linde et al, 2019;McCaffery & Irwig, 2005;Perrin et al, 2006;Tiro et al, 2019;Waller, McCaffery, et al, 2007;Wyndham-West et al, 2018). Women who reported positive emotional responses to their HPV results described receiving their test results in person by a healthcare professional, consulting with a healthcare professional after results, having a supportive partner and/or mobilising social support.…”

“…Seventeen papers were quantitative studies (Alay et al, 2019;Andreassen et al, 2019;Ferenidou et al, 2012;Garces-Palacio et al, 2019;Hsu et al, 2018;Kitchener et al, 2008;Kwan et al, 2011;Maggino et al, 2007;Maissi et al, 2004Maissi et al, , 2005McBride et al, 2020;McCaffery et al, 2004;Nagele et al, 2019;Ngu et al, 2018;Rodriguez et al, 2019;Wang et al, 2010;Wang et al, 2011), 15 were qualitative (Barrera-Clavijo et al, 2015;Barreto et al, 2016;Bertram & Magnussen, 2008;Head et al, 2017;Kosenko et al, 2012;Lin et al, 2011;Linde et al, 2019;McCaffery & Irwig, 2005;McCaffery et al, 2006;McCurdy et al, 2011;O'Connor et al, 2014;Perrin et al, 2006;Tiro et al (2019); Waller, McCaffery, et al, 2007;Wyndham-West et al, 2018) and one was mixed-methods (Daley et al, 2010). A total of 12,789 women aged between 18 and 65 participated in twenty studies (n=12,244 quantitative; n=545 qualitative), of whom 4,305 were reported as having tested positive for HPV (n=3,874 quantitative; n=431 qualitative).…”

“…Emotions related primarily to stigma, fear, selfblame, powerlessness and anger. Tiro et al (2019) To explore patient perspectives after a positive HPV selfsampling result.…”

“…Fear emerged as a dominant theme in ten qualitative studies (Barrera-Clavijo et al, 2015;Barreto et al, 2016;Bertram & Magnussen, 2008;Lin et al, 2011;Linde et al, 2019;McCurdy et al, 2011;O'Connor et al, 2014;Perrin et al, 2006;Tiro et al, 2019;Waller, McCaffery, et al, 2007). Women mainly described fears related to the development of cervical cancer, their future health and potential infertility.…”

“…Despite surprise and/or confusion emerging as themes in ten qualitative studies (Barreto et al, 2016;Head et al, 2017;Kosenko et al, 2012;Lin et al, 2011;Linde et al, 2019;McCaffery & Irwig, 2005;Perrin et al, 2006;Tiro et al, 2019;Waller, McCaffery, et al, 2007;Wyndham-West et al, 2018), these responses were not measured using validated scales in any of the quantitative studies. One descriptive study reported that 70.1% of HPV-positive women endorsed that they felt 'shocked' (Daley et al, 2010).…”