Objective: To assess the written information needs of women who are recalled for further investigation of breast screening.
Methods: Women from eight breast screening centres in England, Scotland, and Wales who had been recalled for further investigation were invited to complete a structured questionnaire about aspects of recall. Four hundred and eighty four consecutive women were invited to be interviewed immediately before assessment. Two weeks after attendance for assessment 2132 consecutive women (including all women who had been interviewed) were sent a postal questionnaire. No reminder was sent. Subjects from four of the centres received an information leaflet with their recall letter, the remainder did not. Letters/ leaflets used by the centres differed markedly.
Results: The response rate was 95% for the interview questionnaires and 70% for the postal questionnaires. Women who were prepared in advance for a possible recall were less likely to feel distressed/ very distressed when receiving a recall letter. The more aspects of the recall process included in the recall literature, the more women were likely to think that assessment had been explained (89% of women (544/ 609) receiving six or more items of information compared with 73% of women (269/370) receiving four or fewer items (P < 0.0001). Women who received a leaflet with their recall letter were significantly more likely to find some aspect of the information about recall reassuring than women who did not (61% (313/510) v 50% (278/557); P < 0.0001). Distressed/very distressed women were significantly more likely than somewhat/not distressed women to want further information about the reasons for recall (48% (403/834) v 26% (157/598); P < 0.0001 and how to get more information (29% (237/811) v 19% (116/ 616); P < 0.0001).
Conclusions: Information can increase satisfaction and reduce distress. The amount of information women needed about recall was consistently underestimated. Inclusion of a leaflet improved satisfaction. Sensitive topics, words, and phrases should be carefully expressed.