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

• Published in: Journal of women's health (Larchmont, N.Y. 2002) Vol. 28; no. 3; p. 384
• Main Authors: Tiro, Jasmin A, Betts, Andrea C, Kimbel, Kilian, Buist, Diana S M, Mao, Constance, Gao, Hongyuan, Shulman, Lisa, Malone, Colin, Beatty, Tara, Lin, John, Thayer, Chris, Miglioretti, Diana L, Winer, Rachel L
• Format: Journal Article
• Language: English
• Published: United States 01.03.2019
• Subjects: Adult; Early Detection of Cancer - methods; Female; Health Knowledge, Attitudes, Practice; Humans; Mass Screening - methods; Middle Aged; Papanicolaou Test - methods; Papillomaviridae - isolation & purification; Papillomavirus Infections - diagnosis; Patient Education as Topic - methods; Self-Examination; Uterine Cervical Neoplasms - diagnosis; human papillomavirus DNA tests; mass screening; qualitative research; early detection of cancer; uterine cervical neoplasms
• ISSN: 1931-843X
• DOI: 10.1089/jwh.2018.7070

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. 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. 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. Although women liked the kit's convenience, discussion about discordant home HPV and in-clinic 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 self-sampling, education should be provided at multiple time points during the screening process.