What are the outcomes of importance for patient education in breast cancer?

Abstract

Patient education is an important component of quality cancer care. However, there remains much debate about its effects, merits and limitations. The primary objective of this thesis was to identify outcomes of importance for patient education interventions in breast cancer. Through the process of this inquiry, a systematic review of all patient education assessment instruments, a literature review of patient education studies in chronic diseases and cancer, and ultimately a qualitative study using interpretive description was conducted. The systematic review of assessment instruments revealed a lack of psychometrically sound instruments developed to assess quality and efficacy of patient education materials. There was also a lack of consensus as to what aspects of materials should be appraised to constitute good quality. The review of patient education intervention studies in both chronic diseases and cancer identified a general lack of consensus on the intended effects of educational interventions. Multiple outcomes were used without consistency and in differing combinations in the literature making it difficult to compare relative efficacy of interventions. To discover what key stakeholders in the process of patient education in breast cancer (patients, physicians and nurses) would identify as outcomes of importance, a generic qualitative study using interpretive description was conducted. Five common themes to all groups with respect to outcomes of importance were discovered: improving knowledge, improving coping ability, providing an orientation to the cancer system, enabling shared decision making and impacting behaviour during cancer treatment. Despite the surprising variability and inconsistency of outcomes discovered in the patient education literature, this qualitative study demonstrated that patients, physicians and nurses generally agree on what constitute important outcomes and serves as a first step in the process of developing validated outcomes for patient education interventions in cancer.