Experiences of women receiving care for pelvic organ prolapse: are services women-centred?

Citation

Hagen S, Abhyankar P, Maxwell M, Wilkinson J, Semple K, Wane S & Uny I (2018) Experiences of women receiving care for pelvic organ prolapse: are services women-centred?. Unmoderated ePoster. International Urogynaecological Association Annual Meeting 2018, Vienna, Austria, 27.06.2018-30.06.2018.

Abstract
Introduction Pelvic organ prolapse is a common urogenital condition affecting 41%-50% of women over the age of 40. Treatment options include surgery or conservative management but the choice depends on prolapse severity and women’s preferences and values. To achieve early diagnosis and appropriate treatment, it is important that care is sensitive to and meets women’s needs, throughout their patient journey. Objective This study aims to explore women’s experiences of seeking diagnosis and treatment for prolapse and to determine women’s needs and priorities to be addressed to improve person-centeredness of care. Methods The study formed phase 1 of a larger study implementing delivery of pelvic floor muscle training by different professional groups across three NHS sites. Twenty-two women receiving prolapse care through local urogynaecology services took part in three focus groups (min 4 - max 9 participants) and four telephone interviews between November 2016 and March 2017. A topic guide facilitated discussions about women’s experiences of prolapse, diagnosis, treatment, follow-up, professionals and overall service, and their ideals for future service. Data were analysed using thematic analysis. Results Prolapse impacted significantly on women’s quality of life, limiting their ability to perform daily chores, enjoy exercise and sport and sleep well. Women often delayed seeking help for their symptoms due to lack of awareness, embarrassment and stigma. General practitioners were the first point of contact for all participants, but the majority expressed dissatisfaction as their symptoms were often dismissed and unaddressed until they became worse, further delaying diagnosis and treatment. Upon referral, some felt steered towards surgery; others reported an increasing trend in referrals to physiotherapy. Regardless of what they were offered, most reported receiving little or no choice in treatment and having little say in treatment decisions. There were mixed views about the impact of different treatments, but physiotherapy seemed to help women regain control over their symptoms and life. Women highlighted a need for greater awareness of prolapse and physiotherapy among women, general practitioners and consultants; greater focus on prevention, early diagnosis and regular follow-up; and more choice and involvement in treatment decision making. Conclusions This study identified several areas which could be addressed to make prolapse care more person-centred in both primary and secondary care settings. There is good trial evidence that pelvic floor muscle training can reduce symptoms of prolapse; greater awareness and education is needed among women and professionals about this as a first line treatment and a preventive measure. Women presenting with prolapse symptoms need to be listened to by the health care team, offered treatment choices and information, and supported to make a decision that is right for them.

Keywords
Person-centred care, Prolapse, Decision making