Joanne P Robinson
Rutgers University, USA
Title: Findings from a decade of research on the lower urinary tract symptom experience in men with Parkinson’s disease and their spouse caregivers
Biography
Biography: Joanne P Robinson
Abstract
Problem Statement: Lower urinary tract symptoms (LUTS) are an important but often neglected issue in patients with Parkinson’s disease (PD). The purpose of this presentation is to highlight findings from a series of studies conducted over the past decade that expand evidence about the prevalence and impact of LUTS in male PD patients and their spouse caregivers. Theory and Methods: Guided by the Theory of Unpleasant Symptoms and family systems theory, four studies were conducted. All participants were recruited from the movement disorders clinic of a Veterans Affairs Medical Center. Study designs were: retrospective with total population sampling (N=271 clinic records); cross-sectional with convenience sampling (N=88 men with PD and LUTS); and qualitative descriptive with purposive sampling of cross-sectional study participants (N=11) and their spouses (N=15). Data from clinic records and interviews (structured and semi-structured) were analyzed using statistical procedures and content analysis (directed and conventional). Findings: Most patient participants had mild PD symptoms, yet UI prevalence was 24% and 92% in retrospective and cross-sectional studies respectively. Patients had limited awareness of the neurologic contributions of PD to LUTS. Embarrassment, bother, and diminished self-esteem jeopardized their relationships, intimacy, social life, and travel. Spouses understood that PD caused LUTS and empathized with their husbands; however, they still experienced bother and emotional distress related to LUTS and coped primarily by “dealing with it.” Patients and spouses relied mostly on do-it-yourself strategies to manage LUTS – some ingenious and some ill-advised. Conclusions: LUTS may be highly prevalent in the early symptomatic phase of PD, negatively affects patients and families, and often escapes the attention of providers. We recommend: screening patients and families for LUTS issues in all stages of PD; inquiring about burden and management strategies; and referring to urology providers as needed. LUTS treatment deserves designation as a priority area for PD research.