Breast cancer survivors : Information needs, attitudes towards illness and quality of life

Breast cancer (BC) is the most common female cancer. Only in Sweden about 7300 women are affected each year and 1500 die from the disease. Following progress in early detection and therapy there has been a marked improvement in survival and an increase in the number of BC survivors. This scenario has directed focus on the communication between the woman and her doctor, to meet information needs and to optimize the decision process about treatments. Quality of life issues among BC survivors is a clinical problem of growing magnitude. The aims of this thesis were: to explore information needs among breast cancer survivors and their preferences for participation in treatment decisions; to elucidate the meaning of illness; to investigate attitudes towards clinical trials, benefits versus risks and the balance between quality and length of life; to assess health related quality of life (HRQoL) with and without hormone replacement therapy (HRT). Structured interviews were performed within 18 months after diagnosis in 201 BC patients. Using validated instruments and questionnaires individual profiles for information needs, preferred/actual role in treatment decision and meaning of illness were explored. Samples of women from the randomized prospective Stockholm trial on HRT after BC were interviewed about participation in clinical trials and about HRQoL. Information needs are strong among breast cancer survivors with the highest priority for disease specific items of information – chance of cure, stage of disease and treatment options. When offered participation in a clinical trial with HRT the top priorities of information were about hard facts related to HRT – risk of recurrence, new research about HRT and evidence about advising women treated for breast cancer against HRT. Breast cancer survivors prefer a collaborative role with their physician in treatment decisions. As the perceived meaning of illness most women chose challenge with enemy and irreparable loss as second and third choices. Women participating in a clinical trial with HRT were more prepared to accept uncertainties and risks, including the risk of a recurrence in breast cancer, if their quality of life or general health was improved. They also had a more altruistic attitude compared to those who declined participation. Women made rational decisions whether to participate or not – participants had a lower risk of recurrence in breast cancer than non-participants. Breast cancer survivors on HRT experienced an improvement in Insomnia compared to the control group without treatment. Within the HRT-group there was an improvement over time for several quality of life variables: anxiety, depression, emotional, cognitive and social functions and for global quality of life. HRT added to tamoxifen significantly increased global quality of life compared to tamoxifen alone. Breast cancer survivors represent a growing number of women with strong information needs. The communication between patients and health care providers should receive increased attention. There is a need for safe and effective strategies to improve HRQoL in breast cancer survivors.