Determining issues of importance for the evaluation of quality of life and patient-reported outcomes in breast cancer: results of a survey of 1072 patients

Identifying key issues for patients is central to assessing treatment for cancer, especially when evaluating health-related quality of life (QL) and patient-reported outcomes (PROs). This study was conducted to provide enhanced content validity support by incorporating the views of a large number of patients with breast cancer. This methodological study used an anonymous, cross-sectional, electronic web-based survey of 1072 patients with a diagnosis of breast cancer. Patients ranked the importance of 21 issues on a 5-point scale. Issues included general, physical, functional, psychosocial, and summative items. Analysis was also performed by four key factors (age group, time since diagnosis, adjuvant treatment or not, and tumor extent). All of the top five issues rated as either “very important” or “important” were global issues—rather than symptoms—such as maintaining quality of life (ranked in these two highest categories by 99 % of patients), maintaining independence (97 %), and ability to perform normal activities (97 %). The abilities to concentrate and to be able to sleep (97 and 96 %, respectively) were ranked above specific breast cancer symptoms. Specific symptoms included within the top ten highest ranked items were fatigue, depression, anxiety, shortness of breath, and pain. This is the largest analysis of evidence-based data determining support for content validity for QL and PROs provided by patients with breast cancer. While symptoms are important to patients, the survey also demonstrates that PRO measures that only evaluate symptoms are not fully responding to patient-expressed needs. These results provide confidence in the content of quality of life measures for large groups of patients with breast cancer, including the new Breast Cancer Symptom Scale (BCSS) questionnaire.