Recalling women for further investigation of breast screening: women's experiences at the clinic and afterwards

BACKGROUND: In 1993-1994 about 66 000 women in breast screening were called back (recalled) to a specialized centre for further investigation (assessment). The information requirements of these women during and after their appointment were investigated. Ninety per cent of recalled women were found not to have cancer. METHODS: Consecutive women (n = 2132) from eight breast screening centres throughout the United Kingdom were asked to complete a postal questionnaire two weeks after attendance at assessment. No reminder was sent. RESULTS: The response rate was 70 per cent. Communication was viewed by women as the most stress-relieving aspect of the recall appointment. Women from centres where nurses provided the opportunity to talk in private before further investigation were less likely to want to talk later about why assessment was needed for them (4 per cent) than women from centres not using a nurse for this purpose (30 per cent) (p < 0.0001). The former were also less likely to want more information about the tests they had had (2 per cent physical examination, 2 per cent X-rays, 3 per cent ultrasound) than the latter (6 per cent, 9 per cent and 10 per cent, respectively) (p < 0.005). Distressed/very distressed women were more likely to have wanted to talk to someone at the centre about the reason for recall (26 per cent) than somewhat distressed/ not distressed women (18 per cent) (p < 0.0001). However, the former were no more likely to have spoken to staff about it than the latter (33 per cent vs 32 per cent). Ways to improve the giving of results were identified. After the appointment women commented that there was a need for more information about harmless breast conditions. CONCLUSIONS: Overall the quality of communication at assessment was viewed highly by women, but varied considerably between centres. There is scope for substantial further improvement. Breast care nurses can play an important role in this.