The information needs of well, longer-term survivors of breast cancer

Nine focus groups for well, longer-term survivors of breast cancer were held in Ontario, Canada. Prevalent themes identified through analysis of focus group transcripts fell into two broad categories, one reflecting the context within which women seek information and the other reflecting the content of information desired and sought. Themes related to context included: the ongoing impact on women of their initial disease experience and continued uncertainty about possible recurrence; womens' lack of information and understanding about processes involved in developing medical knowledge; prevailing mistrust about the impact of cost curtailment policies; and, concerns related to how professional communication can aid or hinder the goal of obtaining information. Themes related to content issues included: follow-up protocols, tamoxifen, detecting signs of possible recurrence, prevention for daughters, neglected side effects of treatment, insurance, lifestyle, and unconventional therapies.