Women receiving notification of an abnormal Pap smear result : experiences and impact on health-related quality of life

Aim: The aim of this thesis was to investigate experiences of receiving notification of an abnormal Pap smear result and its impact on women’s health-related quality of life as well as to investigate women’s awareness of human papillomavirus. Methods: In total, 176 women and 20 healthcare professionals participated. Data were collected through individual interviews (I, II) and a questionnaire (IV) including the instrument Functional Assessment of Chronic Illness Therapy – Cervical Dysplasia (FACIT-CD) and Hospital Anxiety and Depression Scale (HADS). For the translation and cross-cultural adaptation of the FACIT-CD, and for evaluation of its linguistic validity and reliability, cognitive debriefing interviews and a questionnaire consisting of the Swedish instrument FACIT-CD was used. Data were analysed by content analysis (I, II) and by using statistical analysis (III, IV), while one part (III) was analysed according to FACIT translation methodology. Results: Women receiving notification of an abnormal Pap smear result have good overall HRQoL; they become anxious but not depressed. Reasons for anxiety were mainly that women misinterpreted the result as cancer, which could lead to lower attendance for further investigation, treatment and follow-up. To cope with the anxiety, women sought emotional support and information. They primarily used the Internet for information but also turned to healthcare professionals for information needs. Moreover, women had low awareness of HPV, its sexually transmitted nature, and its relationship to abnormal Pap smear results and cervical cancer. An awareness of HPV as a sexually transmitted infection did not lead to higher level of anxiety or more depression symptoms or worse HRQoL, compared to not being aware. Finally, the Swedish FACIT-CD is equivalent to the English version and linguistically valid and exhibited good internal consistency reliability. Conclusion: Women have low awareness of HPV and abnormal Pap smear results, whereupon they misinterpret their test result as cancer. It is of importance that women understand their test result, in order to minimise anxiety as well as to maintain high attendance for investigation, treatment and follow-up of abnormalities