Patients' expectations for follow-up in breast cancer--a preliminary, questionnaire-based study

The current National Institute for Clinical Excellence (NICE) guidelines recommends that only 2-3 years of follow-up after breast cancer be provided. Clinicians are unwilling to implement these guidelines. However, little has been done to establish patients expectations before they embark on their regular follow-up programme. We have sought the opinions of patients in a questionnaire-based prospective cohort study. Expectations for length and frequency of follow-up were established in women prior to attending their first scheduled follow-up review 1 year after treatment. In addition, patients were asked their opinions on what clinics were designed to achieve. An attempt was made to establish whether patients would be happy with less follow-up when informed of the inefficiency of routine clinic visits. Most women expect some follow-up, but expectations for length and frequency vary dramatically. Most believe follow-up is for the detection of relapse, but very few see psychological support or side effect detection as being central to clinicians' aims. One third of women would be happy to not come back to clinic at all when told how infrequently routine clinical examination detects metastatic disease.