Psychosocial consequences of false-positive mammography among women attending breast cancer screening. Assessment, prediction, and coping

Sammanfattning: One side-effect of breast cancer (BC) screening is a false-positive mammogram among healthy women. That is, finding(s) on a screening mammogram that lead to additional breast examinations but where the woman is eventually considered free from BC. There is evidence of short-term psychosocial consequences of false-positive BC screening. Regarding long-term consequences, research findings are inconsistent. Lack of validated condition-specific questionnaires targeting such consequences has been postulated as a potential reason for the inconsistencies. Therefore, the Consequences of Screening - Breast Cancer (COS-BC) questionnaire was developed in Denmark. However, before the COS-BC can be used for studying psychosocial consequences of false-positive BC screening across countries, it needs to be adapted and psychometrically (validity and reliability) tested therein. Furthermore, studies of prediction of long-term psychosocial consequences of false-positive BC screening and coping with such consequences might identify women at risk as well as interventions to prevent consequences of screening. Thus, the aim of this thesis was to validate measures of and study the psychosocial consequences of false-positive mammography among women in a Swedish breast cancer screening programme, and to explore how women cope with such a situation. Interviews with 26 women experiencing false-positive screening mammography (Paper I) provided support for the content validity of a Swedish version of the COS-BC; questionnaire items were generally found relevant, understandable, and covering the psychosocial consequences of false-positive BC screening. Psychometric tests (Paper II) of the COS-BC among 1442 women with false-positive or negative mammography demonstrated support for five COS-BC scales (Sense of dejection, Anxiety, Behavioural, Sleep, and Existential values) for cross-sectional and longitudinal group assessments. The remaining seven COS-BC scales should be used more cautiously. One year follow-up study (Paper III, framework) of 399 recalled women and 449 controls showed that women experience psychosocial consequences targeted by the COS-BC scales, except for breast self-examination consequences. Early recall for subsequent mammography demonstrated the strongest prediction of long-term consequences. Dissatisfaction with information at recall, worry about BC, lack of social support, and being foreign-born were also identified as potential predictors. Interviews with 13 women (Paper IV) experiencing psychosocial consequences of false-positive screening mammography revealed that coping with the situation implied a roller coaster of emotions and sense. Social support, sisterhood, and being professionally taken care of were identified as important aspects of coping with the perceived psychosocial consequences of false-positive BC screening (Paper IV). In conclusion, findings of this thesis confirm the occurrence of short-term psychosocial consequences and demonstrated long-term consequences of false-positive screening mammography among women. Early recall should be avoided and personalized information and communication could be of value in order to diminish the risk of long-term psychosocial consequences of false-positive BC screening. Further research is needed to investigate adequate communication styles, especially in order to face multicultural populations in the context of BC screening.