The aim of this study was to review the literature on quality of life among long-term survivors of breast cancer and identify the specific aspects of quality of life that were affected in these survivors. We also describe predictors of quality of life. Published research reports were included if they described the quality of life of breast cancer survivors diagnosed at least five years earlier. The methodological quality of the 10 selected studies, conducted between 1997 and 2004, was high according to a list of predefined criteria. Most studies reported that long-term survivors of breast cancer experienced good overall quality of life. However, almost all studies reported that breast cancer survivors experienced some specific problems (e.g., a thick and painful arm and problems with sexual functioning). The current medical condition, amount of social support and current income level were strong positive predictors of quality of life, and the use of adjuvant chemotherapy emerged as a negative predictor. More research on the specific medical and psychosocial needs of survivors is needed in order to be able to design appropriate intervention studies. If anything, this review shows that focusing on the long-term effects of breast cancer is important when evaluating the full extent of cancer treatment.

Background: Providing information that is congruent with patients’ needs is an important determinant for patient satisfaction and might also affect health-related quality of life (HRQoL) and anxiety and depression levels of cancer survivors.Design: The authors systematically reviewed the available literature on the relationship between information provision and HRQoL, anxiety and depression. A PubMed literature search for original articles published until February 2010 was carried out. Twenty-five articles, all conducted between 1996 and 2009, which met the predefined inclusion criteria, were subjected to a quality checklist.Results: Satisfied patients, patients with fulfilled information needs, and patients who experience less information barriers, in general have a better HRQoL and less anxiety and depression. Out of eight intervention studies that aimed to improve information provision, only one showed a positive association with better HRQoL.Conclusion: Health care providers must pay more attention to patient-centred information provision. Additional research is needed to make definitive conclusions about information interventions as most results did not reach statistical significance due to methodological constraints. The quick development of the relatively young research field of patient-reported outcomes in cancer survivorship will make it possible to conduct better quality studies in the future.

'Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)' is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short and long-term cancer survivors. PROFILES contains a large web-based component and are linked directly to clinical data from the population-based Eindhoven cancer registry. This paper describes the rationale and design of PROFILES. The primary aims of studies that use the PROFILES registry are: (1) psychosocial risk and outcome assessment to identify patients at high risk for poor physical and mental health outcomes, (2) to analyse mediating mechanisms to better understand the biological and behavioural factors associated with cancer treatment outcomes, and (3) to evaluate physical and psychosocial care needs of cancer survivors. PROFILES is a tool that enables data collection management; from inviting patients to participation in studies, to collecting patient-reported outcomes data via web-based or mailed questionnaires and linking these data with clinical data. The availability of a control cohort of approximately 2000 persons from the general population who complete the same basic questionnaire annually will provide the opportunity to estimate the unique impact of cancer, beyond that of normal ageing and comorbidities. Raw data from the PROFILES registry will be available for non-commercial scientific research, subject to study question, privacy and confidentiality restrictions, and registration (www.profilesregistry.nl).