Women's experience of coping with a positive Pap smear: a register‐based study of women with two consecutive Pap smears reported as CIN 1

Abstract

Background. In Sweden approximately 40 000 women receive information annually that their Papanicolaou (Pap) smear test showed dysplasia and about 400 women are diagnosed with invasive cervical cancer. The aim of this study was to evaluate women 5 years after two consecutive Pap smears diagnosed with mild dysplasia (CIN 1), by describing their experience of receiving information about the results of the smear and how examinations, treatment and follow‐up had affected them.Methods. A questionnaire was sent in 1999 to 329 women who according to the Department of Clinical Pathology, Karlstad, had two consecutive Pap smears reported as mild dysplasia (CIN 1) during 1993 and who as a result of this finding should have undergone colposcopy and biopsy according to an agreed general program.Results. The questionnaire was completed by 242 women (74%). The finding of mild dysplasia was obtained at a screening test in 95%, and 96% reported that they had participated in the follow‐up program. One hundred and eighty‐four women (76%) experienced follow‐up in a positive way. Seventy‐two percent considered they understood the meaning and consequences of having mild dysplasia. Nevertheless, feelings of worry and anxiety affected 59%. For 30% it affected everyday life between being informed of the result of the first Pap smear test and subsequent further investigation. Twenty women (8%) reported a remaining negative influence on sexuality and their experience of sexual intercourse as a consequence of the management of mild dysplasia. This finding was correlated with less satisfaction with follow‐up and a negative influence on self‐esteem.Conclusion. Women felt vulnerable when being investigated for intraepithelial neoplasia, but this did not influence willingness to participate in follow‐up. The discovery created unnecessary worry and a negative experience that may be solved by a better‐developed educational program at the time of screening. There were no signs of remaining anxiety 5 years later, but 8% of women reported a remaining negative influence on their sexual life.