Identifying factors influencing decision making in patients diagnosed with Carotid Body Tumors; An exploratory study.

Abstract Background Carotid Body Tumors (CBTs) are rare highly vascularized and slow enlarging tumors arising from paraganglionic tissue at the carotid bifurcation(1). Main treatment options for CBTs are surgical resection or ‘wait and scan’ strategy. The choice for either strategy may be equally good medically in many patients. A structured ‘Shared Decision Making’ (SDM) might be helpful for guiding patients. Aim In order to develop a SDM strategy for the surgical treatment we aim to: 1) identify considerations and factors involved in the decision-making of patients with CBTs; 2) evaluating the current practice in our clinic and explore the opinions of patients on their treatment. Methods This exploratory study was conducted in patients of the Leiden University Medical Centre (LUMC), The Netherlands. Patients who met the inclusion criteria were invited for a semi-structured interview. All conversations were fully audiotaped and transcripted. Results Fifteen patients were included and interviewed. Ten of these patients underwent previously surgical resection of at least one tumor. Five patients underwent the wait and scan policy. The most important factors influencing decision making in CBT treatment are; family, fears, co-consultants and doctor-patient relationship. Conclusion This study has identified the factors influencing decision-making in CBT and should be considered during consultations. The decision for surgery or not was mainly influenced by physician preferences and family members’ prior experiences.