Decision-making experiences of patients and partners opting for active surveillance in esophageal cancer treatment

• Published in: Patient education and counseling Vol. 127; p. 108361
• Main Authors: Hermus, Merel, van der Sluis, Pieter C., Wijnhoven, Bas P.L., van der Zijden, Charlène J., van Busschbach, Jan J., Lagarde, Sjoerd M., Kranenburg, Leonieke W.
• Format: Journal Article
• Language: English
• Published: Ireland Elsevier B.V 01.10.2024
• Subjects: Active surveillance; Cancer care; Couples' decisionmaking; Decision-making; Esophageal cancer; Family; Neoadjuvant chemoradiotherapy; Relational autonomy; Shared decision-making; Surgery; Decision-making; Relational autonomy; Active surveillance; Surgery; Cancer care; Family; Couples' decisionmaking; Neoadjuvant chemoradiotherapy; Esophageal cancer; Shared decision-making
• ISSN: 0738-3991; 1873-5134; 1873-5134
• DOI: 10.1016/j.pec.2024.108361

This study explored the decision-making experiences of patients and their partners or primary caregiver who opted for experimental active surveillance (instead of standard surgery) for the treatment of esophageal cancer. Seventeen couples participated. Semi-structured interviews were conducted on couples’ joint experiences as well as their individual experiences. Preferred and perceived role in the treatment decision-making process was assessed using the adjusted version of the Control Preferences Scale, and perceived influence on the treatment decision was measured using a visual analog scale. Couples reflected on the decision-making process as a positive collaboration, where patients retain their autonomy by making the final decision, and partners offer emotional support. Couples reported about an overwhelming amount and sometimes conflicting information about treatments among different hospitals and healthcare providers. Patients often involve their partner in decision-making, which they report to have enhanced their ability to cope with the disease. The amount and sometimes conflicting information during the decision-making process provide opportunities for improvement. Couples can benefit from an overview of what they can expect during treatment course. If active surveillance becomes an established treatment option in the future, provision of such overviews and consistent information should become more streamlined. •Patient choice is decisive, yet social context matters.•Couples benefit from an overview of expected treatments for better decision-making.•Decision-making is a process inextricably connected to social relations.•Include partners in decision-making to support couples to cope with cancer.