Breast cancer follow-up: a focus group and interview study

Background

The aim was to explore the experiences of women with breast cancer in relation to routine follow-up appointments in different settings, including the issues surrounding discharge from hospital care.

Methods

A qualitative focus group and interview study in the area of Norfolk serviced by the Norfolk and Norwich University Hospital Healthcare Trust. The participants were 46 women, 2 years or more post diagnosis of breast cancer (range 2–20 years), aged 30–85 years, with no active recurrent disease. The women were undergoing follow-up in hospital or in general practice, or no follow-up.

Six focus group meetings were held initially, transcribed and themes derived using N*Vivo software and constant comparison. Individual interviews were then carried out to explore the themes, and to widen the range of participants.

Results

Themes identified fell into two categories: discharge from hospital care, and information. Themes related to the former included initial disease experience, whether the cancer was detected mammographically or self-detected, uncertainty about recurrence, 'expert' care', and continuity of care. Themes related to information included follow-up protocols, breast care nurses, tamoxifen, mammography, lymphoedema, and the role of support groups.

Conclusion

Women wished to participate in decisions on follow-up. A small group of women preferred hospital follow-up long term. Most others would value a final hospital appointment generating a plan for further follow-up. They would then be content to be discharged to GP care, preferably with telephone access to a breast care nurse. A few women were confident to be discharged fully to self-examination and mammography with no formal follow-up. The breast care nurses were a popular choice to provide 'expert' information at every stage of the process, and were perceived as easily accessible. This study supports increasing the role of breast care nurses in the community after discharge from hospital care.