To Örebro University

Background: The local authorities for health and welfare support the introduction of Patient Reported Outcome Measures (PROM) in the quality registers in Sweden. Valid and reliable instruments measuring PROM do not exist that could be used throughout the whole breast cancer process. We sought to develop and implement PROM for breast cancer at different stages in the disease course in different Swedish geographic regions for later use in the Swedish National Quality Register for breast cancer. The aim was to develop appropriate PROM to assess symptoms and problems among patients with breast cancer about one year after diagnosis.

Materials and Methods: A scoping review and focus group discussions were conducted with women invited by the breast cancer association Amazona (Stockholm). The symptoms that emerged from the scoping review and focus group discussions formed the basis for the development of a web based questionnaire consisting of validated instruments (EORTC QLQ-C30, BR 23, MSAS) for measuring PROM. The women who participated in the focus group discussions were invited to respond to a pilot version of the web based questionnaire. The results were used to revise the web based questionnaire. An invitation was sent to a national random sample from the Swedish National Breast Cancer Quality Register diagnosed one year earlier to respond to the revised version of the web based questionnaire.

Results: The results will present the work process of the development of the PROM as well as plans for further work on the implementation of the PROM in the Swedish National Quality Register for breast cancer. Preliminary data shows that about 70% responded to the revised version of the web based questionnaire. However, some women requested a paper version of the questionnaire mostly because they did not have access to a computer.

Conclusion: In the development of PROM in quality registers it is important to include patients experiences in order to develop relevant outcome measures to influence the quality of the health care delivery.