Chest surgery for patients with Poland's syndrome: Findings from co-produced group discussions.

Abstract

Poland's syndrome (PS) is a rare congenital condition with unilateral impacts on the chest. In addressing chest differences, surgery is often offered but not consistently performed on patients with PS. The present study sought to identify areas of importance around decision-making and outcomes in surgeries performed to address reduced or missing pectoral muscles. A qualitative approach was employed and co-produced, semi-structured group discussions were conducted online primarily involving UK-based participants, who (1) have PS and (2) have been offered chest surgery for their affected side. The thematic analysis of collected data resulted in the identification of 6 themes and 10 subthemes. Those related to decision-making included self-esteem and body image (gendered pressures, the mental health impact of PS and a lack of mental health support), feeling medically Othered (shared uncertainty and being treated as a case study) and inconsistent treatment (agency and communication). Those related to outcomes included continued inconsistent treatment (condition comparison and lack of consistent care over time), empowerment and a lifetime of surgery (doing and re-doing surgeries, difficult recoveries and adverse outcomes). Overall, evidence from this study clarified the need for a more robust pathway to provide patients with PS with more informative and individualised care, including offers of psychological support.