Breast Cancer Patients' Experiences and Reflections Regarding Information about Adjuvant Endocrine Therapy and its Side-Effects - A Focus Group Study

Abstract

Objective: Adjuvant endocrine therapy is essential for women diagnosed with a hormone receptor-positive breast tumour. However, not all women adhere to the therapy. The purpose of the study is to identify representations, experiences and beliefs of women undergoing adjuvant endocrine breast cancer therapy regarding information and communication about the therapy and its side effects. Methods: In this socio-anthropological survey study altogether 46 women with breast cancer participated, 33 from Stockholm County and 13 from Norrbotten County in Sweden. Eight focus group interviews were conducted. The recorded interviews were analysed using qualitative content analysis with an inductive approach. Results: In Stockholm County the most reported sources of information were the patient organization, health care providers, the Internet and other media, and friends. In Norrbotten County, health care providers were by far the most frequently reported source of information. Most of the women trusted their physician and understood that it was important to take the therapy. Still, some women had misconceptions as to why they had been prescribed adjuvant endocrine therapy in the first place. Many women reported that when they were put on the therapy they had a mental block or were unreceptive for a variety of reasons. Some reported that they had heard or read tasks on Internet or in other media that made them question the therapy. The information the women had received about the side effects of the therapy differed between the regions regarding how and when they had received information. In both regions, however, the women reported information gaps. Conclusions: The key finding in this study is that most of the women trusted their physicians and understood that the therapy was essential, but many women reported that when the therapy was offered they were unreceptive for a variety of reasons. Another finding is that patient organization, friends, Internet and other media have a significant role in how women perceive the endocrine breast cancer therapy.