Adherence to adjuvant endocrine therapy among breast cancer survivors: a systematic review and meta-synthesis of the qualitative literature using grounded theory

PURPOSE: Numerous studies have examined non-adherence to adjuvant endocrine therapy in women recovering from breast cancer, but none provides a comprehensive theory to explain the challenges of long-term medication taking and resilience needed to continue. The aim of this study was to source, appraise, and synthesize data from existing qualitative studies to develop an in-depth explanatory model of non-adherence and discontinuation of hormonal medication among breast cancer survivors. METHODS: A comprehensive search of databases and the literature identified 24 eligible qualitative studies published 2010–2019. Quotations (n = 801) listed within these papers and the original author interpretations were synthesized using NVivo, and grounded theory methodology. RESULTS: At the beginning, knowledge about adjuvant endocrine therapy, trust in doctors, and worries and expectations, mean agreeing to medication is the only viable option, akin to a Hobson’s choice. Thereafter, women’s ability to deal with medication side-effects, knowledge and support received affect their decision to continue, akin to a horned dilemma where giving up the medication risks cancer recurrence and continuing means reduced contentment. Women stopping medication altogether question treatment necessity, search for normalcy and prioritize quality of life. CONCLUSION: Shared experiences and understandings were uncovered by examining commonalities in existing publications. The core category explained the difficulties women face with the initial decision to accept long-term endocrine therapy and then the everyday challenges of continuing or deciding to stop treatment early. An educational tool to inform survivors and health professionals about these challenges could potentially improve women’s experience on treatment and in turn their adherence. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s00520-020-05585-9) contains supplementary material, which is available to authorized users.