Therapeutic Decision Making by Muscle Invasive Bladder Cancer Patients: The Role of Informational and Emotional Needs and Care Provider Support

Objective: To explore patient factors that influence patients' decisions about Neoadjuvant chemotherapy (NC) including patient unmet needs, challenges in decision making, and the role of family and caregiver involvement in treatment decision making. Our goal is to elucidate patient factors including their beliefs, values, expectations, worries about NC and MIBC, emotional challenges, and the importance of caregivers' involvement in decision making and selection of treatment procedures. Design: A qualitative study with semi-structured single interviews and focus groups. Atlas.ti software was used to analyze the qualitative data collected. Settings: Icahn School of Medicine at Mount Sinai (ISMMS) and Northwell Health (NH), New York, USA. Methods and Materials: 20 MIBC survivors from the ISMMS (n = 10) and NH (n = 10) were enrolled in this study from September 2015 and August 2016. 17 of them finished a semi-structured single interview and 3 of them joined a focus group interview to share their decision-making process about their treatment plans. Three ISMMS health care providers were interviewed to understand physicians' standpoints on the challenges, barriers, and potential facilitators for MIBC patients to make a decision about their treatment plans. Results: Patients decisions on whether or not to go through NC were influenced by three major parts: physician's opinion or suggestion, family and spouses' opinion, and patients' own value and preferences. Sufficient information about treatment efficacy (i.e. treatment options, survival rates, experience sharing from former patients) would benefit patients' decision-making process. Therefore ensuring information available for patients is important Results also showed that having a second opinion, experience shared by other patients, and caregivers' help with information search helped address some of the patients' reported informational needs. Physicians' recommendations and advice were reported as influential factors in patients' treatment decision making. Physicians' challenges confirmed by interviewed patients suggested several areas await improvement including more help with daily activities from healthcare professionals, good bedside manners and professional figures, and opportunity to communicate with former patients. Conclusions: Meeting patients' informational and emotional needs is imperative to facilitate their decision-making process. Caregivers play significant roles in treatment decision making and recovery. Preparing caregivers for treatment decision making and patient care can maximize support received from the patient's social network