PATIENT SUPPORT NEEDS AND COPING MECHANISMS FOR CLINICAL T1 RENAL MASS DECISION-MAKING

Abstract

Introduction

Decision-making for T1 renal masses has become increasingly complex as more management options have become available. Most patients experience decisional conflict at some point in their decision-making process due to fear, uncertainty, and lack of understanding. Furthermore, decisional conflict may prompt patients to undergo a treatment that does not necessarily align with their priorities or values. For medical decisions, patients have a variety of unique support needs that impact their decision-making process, preferences, and treatment choice. To better support these patient needs, we sought to characterize support needs and coping mechanisms for patients presenting for small renal masses (SRM).

Methods

Forty patients previously enrolled onto the GRADE-SRM study, a prospective clinical trial examining cancer genomics and the impact of renal mass biopsy on decision-making, were recruited to participate in a follow-up qualitative study. Participants were purposely sampled based on high (21) vs. low (19) decisional conflict scores as well as diverse support needs and coping strategies. Trained qualitative researchers conducted semi-structured interviews asking participants questions related to decision-making support needs including factors that impacted their decision-making preferences and coping strategies. Qualitative researchers then conducted a coding-based thematic analysis to define pertinent themes regarding patient support needs that impact decision-making. Further post hoc analysis was conducted to synthesize and describe support needs and coping mechanisms across the cohort.

Results

Among the 40 interview participants, the mean age was 65.1, with 58% male and 72.5% White. A primary focus on either preparation/process or health outcomes tended to drive individual support needs. A focus on process entailed steps in management and the overall journey while a focus on outcomes encompassed impact on survival or other health effects. Patient support needs fell into three main categories that were identified in post hoc analysis: informational, emotional, and instrumental support. Within each category, patients desired support from both their healthcare team and personal support system. Informational supports included medical counseling from their urologist and advice externally. Patients required emotional support from both medical and social sources but mainly desired instrumental support from their social network. Patients described coping mechanisms employed from diagnosis through treatment. These fell into four categories: relying on faith, controlling outlook, depending on external support, and trusting in their urologist.

Conclusions

Patients display a diverse range of support needs and coping strategies during the process of diagnosis and decision-making for clinical T1 renal masses that we can overwhelmingly categorize into discrete subtypes. Further, patient support needs tend to be driven by either a focus on process or outcome. These findings provide further understanding and context for how support needs may be used to promote shared decision-making. Efforts to improve the decision-making process may consider support needs, drivers, and coping mechanisms during development.