Patient Frustration with Pelvic Organ Prolapse Education Met with Resilient Response

Abstract

Introduction: Limited patient understanding due to challenges in physician-patient communication and inadequate patient education materials (PEMs) can result in poor outcomes after pelvic organ prolapse (POP) repair.Our objective was to identify how patients learned about POP and review their perception of available educational tools. Methods: Patients with a history of POP were recruited using ResearchMatch and invited to participate in a virtual semi-structured interview where they were shown a website, brochure, and video pertaining to POP. Information regarding patient preference for PEMs was obtained. The interviews were transcribed, coded, and qualitative data analysis was performed using grounded theory methodology.Results: Qualitative analysis of interviews of 13 participants averaging 58 years old yielded several preliminary themes including: insufficient information to guide treatment decisions, preference for multimodal, dynamic, and comprehensive materials, and lack of support leading to avoidance of care, misinformation, and self-advocacy mechanisms. Emerging concepts included: lack of complete information regarding POP treatment resulted in misinformation, stress and desperation, distrust of healthcare providers leading to feelings of isolation, desire of support groups, and loss of follow up, and a desire for well-organized, detailed, multimodal, and destigmatizing materials as a guide to their disease process, prevention and risk factors, its natural progression, and treatment decisions. Participants developed self-reliant strategies for making treatment decisions, including the use of online resources, advice from friends, and independent search for more specialized physicians. Conclusions: Women with POP reported a lack of information and support which resulted in the generation of self-coping mechanisms. This led to significant anxiety surrounding their diagnosis and treatment and poor satisfaction. Developing a reproducible methodology to create evidence-based PEMs will significantly decrease patient misinformation, apprehension, and use of inaccurate sources of information.

A Qualitative Exploration of the Perceptions of Women Living with Pelvic Floor Disorders and Factors Related to Quality of Life

“…Furthermore, adverse effects on arousal and orgasm are also observed, indicating that they often changed their practices of sexual intimacy due to the embarrassment or discomfort of their prolapse. Many women reported a complete avoidance of physical intimacy and sexual intercourse, resulting in decreased overall quality of life, as previously reported in other research [30,32,33,40].…”

“…Embarrassment due to incontinence triggers the fear that incontinence will occur during sex. This fear of coital incontinence has the potential to impact all stages of sexual arousal, which is consistently confirmed in the literature, with a desire on the part of women to pretend everything is normal with their partners and hide this type of problem [30,32,33].…”

“…Some women described pelvic floor disorders as causing urinary incontinence problems during physical activity, night-time rest, and sexual activity [30,32,33], having a negative impact on their personal, social, and physical interactions. This was often attributed to anxiety and stress generated by feelings of discomfort and insecurity, as also described by other authors [34,35] A feeling of embarrassment and resignation was experienced by the women interviewed regarding moments with their partners or social situations with family and friends resulting from urinary incontinence.…”

Pelvic organ prolapse: The lived experience

“…Women have also highlighted healthcare system issues such as difficulty accessing reliable information about POP, inadequate HCP knowledge about POP and issues with access to specialised care for POP due to cost or lack of services [ 16 , 71 ]. A general lack of awareness of POP, even among women at risk of developing the condition has also been noted [ 72 ]. Little research has focused on the natural history of POP or the effects of exercise on pelvic organ support [ 50 ] in women with and without POP and there are no guidelines for exercise in women with pelvic dysfunction for HCPs to refer to.…”

“…Increased education, knowledge and awareness about POP among women of all ages, particularly prior to becoming pregnant has been highlighted by women with POP as a key area for improvement [11,16,71,72] and has been shown to be effective in reducing fear avoidance and increasing function in people with chronic health issues [73][74][75][76][77].…”