Psychological distress in cervical cancer screening: results from a German online survey

M Jentschke, R Lehmann, N Drews, A Hansel, M Schmitz, P Hillemanns, M Jentschke, R Lehmann, N Drews, A Hansel, M Schmitz, P Hillemanns

Abstract

Purpose: The PODCAD study aimed at assessing the degree of psychological stress that women experience due to notification of an abnormal Papanicolaou (Pap) smear finding or a positive human papillomavirus (HPV) test result.

Methods: We designed a survey to address the question of psychological burden due to abnormal Pap smear results and/or positive HPV tests. In this online campaign approach, we aimed to reach > 2000 women all over Germany irrespective of kind and number of abnormal screening findings. We asked for different kinds of anxiety, distress and uncertainty regarding both, Pap and HPV status.

Results: A total of 3753 women completed the survey at least partially, and almost 2300 fully completed the survey. Of these, more than 50% were affected already since more than 1 year, and almost half of them had experienced at least three Pap smears in follow-up examinations. Almost 70% of the women were afraid of developing cancer. Intriguingly, almost half of the women with abnormal findings were not aware of their stage of the Pap smear. Furthermore, almost 30% of the women displayed signs of a post-traumatic stress disorder.

Conclusion: Abnormal results in cervical cancer screening have an impact on patients' psychology, irrespective of the knowledge and severity of the findings. Better information concerning risks and benefits of cervical cancer screening and about the meaning of the outcome of its procedures are required to decrease this anxiety.

Keywords: Cervical cancer screening; HPV test; Pap smear; Psychological distress.

Conflict of interest statement

MJ and PH declare no conflicts of interest. RL and ND are employees of DontBePatient gGmbH. MS and AH are shareholders and employees of oncgnostics GmbH, a company that aims to commercialize DNA methylation markers.

Figures

Fig. 1
Fig. 1
Anxiety about developing cancer or even dying
Fig. 2
Fig. 2
Anxiety about the abnormal screening findings. Women with abnormal Pap smear findings or positive HPV test results were asked to judge, on a scale from 0 to 5 (1 = not concerned; 2 = slightly concerned; 3 = rather concerned; 4 = clearly concerned; 5 = severely concerned), how much they were concerned about these findings
Fig. 3
Fig. 3
Distress level among women with childbearing preferences is higher than among other women. Average level of concerns of women, with or without childbearing preferences, in different age groups ( 44 years)

References

    1. Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2018;68(6):394–424. doi: 10.3322/caac.21492.
    1. Cuzick J, Clavel C, Petry KU, Meijer CJ, Hoyer H, Ratnam S, Szarewski A, Birembaut P, Kulasingam S, Sasieni P, Iftner T. Overview of the European and North American studies on HPV testing in primary cervical cancer screening. Int J Cancer. 2006;119(5):1095–1101. doi: 10.1002/ijc.21955.
    1. Rijkaart DC, Berkhof J, Rozendaal L, van Kemenade FJ, Bulkmans NWJ, Heideman DAM, Kenter GG, Cuzick J, Snijders PJF, Meijer CJLM. Human papillomavirus testing for the detection of high-grade cervical intraepithelial neoplasia and cancer: final results of the POBASCAM randomised controlled trial. Lancet Oncol. 2012;13(1):78–88. doi: 10.1016/S1470-2045(11)70296-0.
    1. Wright TC, Stoler MH, Behrens CM, Sharma A, Zhang G, Wright TL. Primary cervical cancer screening with human papillomavirus: end of study results from the ATHENA study using HPV as the first-line screening test. Gynecol Oncol. 2015;136(2):189–197. doi: 10.1016/j.ygyno.2014.11.076.
    1. Hillemanns P, Friese K, Dannecker C, Klug S, Seifert U, Iftner T, Hadicke J, Loning T, Horn L, Schmidt D, Ikenberg H, Steiner M, Freitag U, Siebert U, Sroczynski G, Sauerbrei W, Beckmann MW, Gebhardt M, Friedrich M, Munstedt K, Schneider A, Kaufmann A, Petry KU, Schafer APA, Pawlita M, Weis J, Mehnert A, Fehr M, Grimm C, Reich O, Arbyn M, Kleijnen J, Wesselmann S, Nothacker M, Follmann M, Langer T, Jentschke M. Prevention of Cervical Cancer: guideline of the DGGG and the DKG (S3 Level, AWMF Register Number 015/027OL, December 2017)—Part 1 with introduction, screening and the pathology of cervical dysplasia. Geburtshilfe Frauenheilkd. 2019;79(2):148–159. doi: 10.1055/a-0818-5440.
    1. Myers ER, McCrory DC, Nanda K, Bastian L, Matchar DB. Mathematical model for the natural history of human papillomavirus infection and cervical carcinogenesis. Am J Epidemiol. 2000;151(12):1158–1171. doi: 10.1093/oxfordjournals.aje.a010166.
    1. Blomberg K, Tishelman C, Ternestedt BM, Tornberg S, Leval A, Widmark C. How can young women be encouraged to attend cervical cancer screening? Suggestions from face-to-face and internet focus group discussions with 30-year-old women in Stockholm, Sweden. Acta Oncol (Stockholm, Sweden) 2011;50(1):112–120. doi: 10.3109/0284186X.2010.528790.
    1. Hellsten C, Lindqvist PG, Sjostrom K. A longitudinal study of sexual functioning in women referred for colposcopy: a 2-year follow up. BJOG. 2008;115(2):205–211. doi: 10.1111/j.1471-0528.2007.01503.x.
    1. Hellsten C, Sjostrom K, Lindqvist PG. A longitudinal 2-year follow-up of quality of life in women referred for colposcopy after an abnormal cervical smear. Eur J Obstet Gynecol Reprod Biol. 2009;147(2):221–225. doi: 10.1016/j.ejogrb.2009.09.002.
    1. Heinonen A, Tapper AM, Leminen A, Sintonen H, Roine RP. Health-related quality of life and perception of anxiety in women with abnormal cervical cytology referred for colposcopy: an observational study. Eur J Obstet Gynecol Reprod Biol. 2013;169(2):387–391. doi: 10.1016/j.ejogrb.2013.03.033.
    1. Rask M, Swahnberg K, Lindell G, Oscarsson M. Women’s experiences of abnormal Pap smear results—a qualitative study. Sex Reprod Healthc. 2017;12:3–8. doi: 10.1016/j.srhc.2017.01.002.
    1. Rask M, Oscarsson M, Lindell G, Swahnberg K. Women with abnormal Pap smear result: a qualitative study of Swedish healthcare professionals’ experiences. Eur J Cancer Care (Engl) 2016;25(6):980–991. doi: 10.1111/ecc.12415.
    1. Oscarsson MG. Psychological adjustment of women in cervical cancer screening. Curr Women Health Revi. 2011;7(4):353–357. doi: 10.2174/157340411799079607.
    1. Thangarajah F, Einzmann T, Bergauer F, Patzke J, Schmidt-Petruschkat S, Theune M, Engel K, Puppe J, Richters L, Mallmann P, Kirn V. Cervical screening program and the psychological impact of an abnormal Pap smear: a self-assessment questionnaire study of 590 patients. Arch Gynecol Obstet. 2016;293(2):391–398. doi: 10.1007/s00404-015-3821-z.
    1. Korfage IJ, Essink-Bot ML, Westenberg SM, Helmerhorst T, Habbema JD, van Ballegooijen M. How distressing is referral to colposcopy in cervical cancer screening?: a prospective quality of life study. Gynecol Oncol. 2014;132(1):142–148. doi: 10.1016/j.ygyno.2013.11.001.
    1. Rask M, Oscarsson M, Ludwig N, Swahnberg K. The Swedish translation and cross-cultural adaptation of the functional assessment of chronic illness therapy—cervical dysplasia (FACIT-CD): linguistic validity and reliability of the Swedish version. BMC Womens Health. 2017;17(1):24. doi: 10.1186/s12905-017-0381-3.
    1. Rask M, Swahnberg K, Oscarsson M. Notification of an abnormal Pap smear result: an intervention study. Eur J Cancer Care (Engl) 2019;28(2):e12969. doi: 10.1111/ecc.12969.
    1. Rothnie K, Cotton SC, Fielding S, Gray NM, Little J, Cruickshank ME, Walker LG, Avis M, Sharp L. Measuring the psychosocial burden in women with low-grade abnormal cervical cytology in the TOMBOLA trial: psychometric properties of the Process and Outcome Specific Measure (POSM) Health Qual Life Outcomes. 2014;12:154. doi: 10.1186/s12955-014-0154-8.
    1. Shinn E, Basen-Engquist K, Le T, Hansis-Diarte A, Bostic D, Martinez-Cross J, Santos A, Follen M. Distress after an abnormal Pap smear result: scale development and psychometric validation. Prev Med. 2004;39(2):404–412. doi: 10.1016/j.ypmed.2004.02.004.
    1. Nagele E, Reich O, Greimel E, Dorfer M, Haas J, Trutnovsky G. Sexual activity, psychosexual distress, and fear of progression in women with human papillomavirus-related premalignant genital lesions. J Sex Med. 2016;13(2):253–259. doi: 10.1016/j.jsxm.2015.12.012.
    1. O’Connor M, Gallagher P, Waller J, Martin CM, O’Leary JJ, Sharp L. Adverse psychological outcomes following colposcopy and related procedures: a systematic review. BJOG. 2015;123(1):24–38. doi: 10.1111/1471-0528.13462.
    1. Balasubramani L, Orbell S, Hagger M, Brown V, Tidy J. Do women with high-grade cervical intraepithelial neoplasia prefer a see and treat option in colposcopy? BJOG. 2007;114(1):39–45. doi: 10.1111/j.1471-0528.2006.01160.x.
    1. Ilic I, Babic G, Dimitrijevic A, Ilic M, SipeticGrujicic S. Psychological distress among women with abnormal pap smear results in Serbia: validity and reliability of the Cervical Dysplasia Distress Questionnaire. PLoS ONE. 2019;14(6):e0218070. doi: 10.1371/journal.pone.0218070.
    1. Frederiksen ME, Njor S, Lynge E, Rebolj M. Psychological effects of diagnosis and treatment of cervical intraepithelial neoplasia: a systematic review. Sex Transm Infect. 2015;91(4):248–256. doi: 10.1136/sextrans-2014-051754.
    1. Gemeinsamer Bundesausschuss. Richtlinie des Gemeinsamen Bundesausschusses für organisierte Krebsfrüherkennungsprogramme—oKFE-Richtlinie/oKFE-RL. 2019. . Accessed 15 Dec 2019.
    1. Kessler RC. Posttraumatic stress disorder: the burden to the individual and to society. J Clin Psychiatry. 2000;61(5):4–12.
    1. Sareen J, Cox BJ, Stein MB, Afifi TO, Fleet C, Asmundson GJ. Physical and mental comorbidity, disability, and suicidal behavior associated with posttraumatic stress disorder in a large community sample. Psychosom Med. 2007;69(3):242–248. doi: 10.1097/PSY.0b013e31803146d8.
    1. Palmer AG, Tucker S, Warren R, Adams M. Understanding women’s responses to treatment for cervical intra-epithelial neoplasia. Br J Clin Psychol. 1993;32(1):101–112. doi: 10.1111/j.2044-8260.1993.tb01033.x.
    1. Freeman-Wang T, Walker P, Linehan J, Coffey C, Glasser B, Sherr L. Anxiety levels in women attending colposcopy clinics for treatment for cervical intraepithelial neoplasia: a randomised trial of written and video information. BJOG. 2001;108(5):482–484.
    1. de Bie RP, Massuger LF, Lenselink CH, Derksen YH, Prins JB, Bekkers RL. The role of individually targeted information to reduce anxiety before colposcopy: a randomised controlled trial. BJOG. 2011;118(8):945–950. doi: 10.1111/j.1471-0528.2011.02996.x.
    1. Kitchener HC, Fletcher I, Roberts C, Wheeler P, Almonte M, Maguire P. The psychosocial impact of human papillomavirus testing in primary cervical screening-a study within a randomized trial. Int J Gynecol Cancer. 2008;18(4):743–748. doi: 10.1111/j.1525-1438.2007.01113.x.

Source: PubMed

3
Subscribe