Background: It is unclear to which degree the services available after end of treatment are sufficient to meet the needs of women treated for breast cancer. The aim of the present study was to identify patient-reported supportive care needs and the prevalence of fear of cancer recurrence (FCR) following end of treatment in women treated for breast cancer. Material and methods: Using a cross-sectional design, women treated for breast cancer (n ¼ 155; mean age 63) completed questionnaires concerning supportive care needs and FCR. Inclusion criteria were: !18 years of age and treated for primary breast cancer at Aarhus University Hospital, Aarhus, Denmark and between three months and five years after diagnosis. Associations between demographic characteristics, clinical factors, side effects, late effects and the two dependent variables, unmet needs (examined with linear regression model), and FCR (examined with logistic regression model) were analyzed. Results: The response rate was 79.9%. Almost all (82.6%) women reported at least one unmet need (mean number 9.3; range 0-34). More than half (59.3%) of the unmet needs were rated as strong unmet needs. The most frequent unmet needs were concerned with doctors collaborate to coordinate care; the need for having ongoing dialog with healthcare providers to receive available local health care services, understandable and up-to-date information, to manage side effects and feeling reassured that the best medical care are given. Having unmet needs were associated with young age, short time since primary surgery, and having clinical FCR. FCR was reported by 54.8% of the women and was associated with short time since primary surgery, having chemotherapy, having unmet needs, and moderate to severe muscle and joint pain and fatigue. Conclusions: Breast cancer survivors experience substantial unmet needs years after end of treatment, particularly among younger women and women having clinical FCR. Furthermore, FCR is frequent among women, particularly when closer in time to primary surgery.

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Breast cancer survivors have specific healthcare needs. As a result of their disease and treatment, they have to adapt to different physical and psychosocial late effects. Unfortunately, several studies have documented insufficiency in the survivorship healthcare system. The aim of this paper was to describe the process of development and testing of a novel Cancer Self-management Education programme (CSME programme) to improve patient-reported self-management and self-efficacy for patients with breast cancer who were at the end of primary treatment. The development of the educational programme was inspired by the Plan-Do-Study-Act (PDSA) circle and based on person-centred principles. It was conducted at a Danish university hospital. Nine oncology healthcare providers, two external experts in patient education and five patients were involved in the development and testing of the education programme. Implementation of dialogue-based tools was used as an educational learning instrument in the SCME programme. The PDSA approach to the development of the CSME programme resulted in a person-centred programme that could improve self-management and self-efficacy in the survivorship phase of patients with breast cancer.

None of the scheduled or additional visits resulted in detection of recurrent disease. Furthermore, the majority of patients reported side or late effects. Statistically significant more women reported side or late effects than registered by the clinical oncologists. This suggests the need for rethinking of the follow-up programs with more emphasis upon side or late effects of the treatment.

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