Article Text

Original research
Patterns of anxiety and distress over 12 months following participation in HPV primary screening
  1. Laura A V Marlow1,2,
  2. Emily McBride2,
  3. Deborah Ridout3,
  4. Alice S Forster2,
  5. Henry Kitchener4,
  6. Jo Waller1,2
  1. 1 Cancer Prevention Group, School of Cancer and Pharmaceutical Sciences, King's College London, London, UK
  2. 2 Research Department of Behavioural Science and Health, University College London, London, UK
  3. 3 UCL Great Ormond Street Institute of Child Health, University College London, London, UK
  4. 4 Women's Cancer Centre, Institute of Cancer Sciences, The University of Manchester, Manchester, UK
  1. Correspondence to Dr Laura A V Marlow, Cancer Prevention Group, School of Cancer and Pharmaceutical Sciences, King's College London, London, SE1 9RT, UK; l.marlow{at}kcl.ac.uk

Abstract

Objectives Many countries are now using primary human papillomavirus (HPV) testing for cervical screening, testing for high-risk HPV and using cytology as triage. An HPV-positive result can have an adverse psychological impact, at least in the short term. In this paper, we explore the psychological impact of primary HPV screening over 12 months.

Methods Women were surveyed soon after receiving their results (n=1133) and 6 (n=762) and 12 months (n=537) later. Primary outcomes were anxiety (Short-Form State Anxiety Inventory-6) and distress (General Health Questionnaire-12). Secondary outcomes included concern, worry about cervical cancer and reassurance. Mixed-effects regression models were used to explore differences at each time point and change over time across four groups according to their baseline result: control (HPV negative/HPV cleared/normal cytology and not tested for HPV); HPV positive with normal cytology; HPV positive with abnormal cytology; and HPV persistent (ie, second consecutive HPV-positive result).

Results Women who were HPV positive with abnormal cytology had the highest anxiety scores at baseline (mean=42.2, SD: 15.0), but this had declined by 12 months (mean=37.0, SD: 11.7) and was closer to being within the ‘normal’ range (scores between 34 and 36 are considered ‘normal’). This group also had the highest distress at baseline (mean=3.3, SD: 3.8, scores of 3+ indicate case-level distress), but the lowest distress at 12 months (mean=1.9, SD: 3.1). At 6 and 12 months, there were no between-group differences in anxiety or distress for any HPV-positive result group when compared with the control group. The control group were less concerned and more reassured about their result at 6 and 12 months than the HPV-positive with normal cytology group.

Conclusions Our findings suggest the initial adverse impact of an HPV-positive screening result on anxiety and distress diminishes over time. Specific concerns about the result may be longer lasting and efforts should be made to address them.

  • public health
  • psychology
  • women's health services
  • primary health care
  • delivery of health care

Data availability statement

The datasets generated and/or analysed during the study are available from the corresponding author on reasonable request.

https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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Data availability statement

The datasets generated and/or analysed during the study are available from the corresponding author on reasonable request.

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Footnotes

  • Handling editor Jamie Scott Frankis

  • Twitter @allyforster, @Jo_WallerKCL

  • Collaborators Julietta Patnick.

  • Contributors The study was conceived by JW, LAVM, ASF and HK. Data collection and management were coordinated by EM. Data were analysed by DR and LAVM. The manuscript was drafted by LAVM and JW. All authors edited the final version of the manuscript.

  • Funding This study was funded by Public Health England (PHE). JW, LAVM and ASF are funded by Cancer Research UK (C7492/A17219 and C49896/A17429). EM was funded by PHE from 4 Jan 2016 to Sept 2017 and by the National Institute for Health Research (NIHR) from Oct 2017 to date (DRF‐2017‐10‐105). HK was not funded.

  • Disclaimer The views expressed in this paper are not necessarily those of the NHS, NIHR, or Department of Health and Social Care.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.