Women’s experiences of receiving care for pelvic organ prolapse: a qualitative study

Abstract

BackgroundPelvic organ prolapse is a common urogenital condition affecting 41–50% of women over the age of 40. To achieve early diagnosis and appropriate treatment, it is important that care is sensitive to and meets women’s needs, throughout their patient journey. This study explored women’s experiences of seeking diagnosis and treatment for prolapse and their needs and priorities for improving person-centred care.MethodsTwenty-two women receiving prolapse care through urogynaecology services across three purposefully selected NHS UK sites took part in three focus groups and four telephone interviews. A topic guide facilitated discussions about women’s experiences of prolapse, diagnosis, treatment, follow-up, interactions with healthcare professionals, overall service delivery, and ideals for future services to meet their needs. Data were analysed thematically.ResultsThree themes emerged relating to women’s experiences of a) Evaluating what is normal b) Hobson’s choice of treatment decisions, and c) The trial and error of treatment and technique. Women often delayed seeking help for their symptoms due to lack of awareness, embarrassment and stigma. When presented to GPs, their symptoms were often dismissed and unaddressed until they became more severe. Women reported receiving little or no choice in treatment decisions. Choices were often influenced by health professionals’ preferences which were subtly reflected through the framing of the offer. Women’s embodied knowledge of their condition and treatment was largely unheeded, resulting in decisions that were inconsistent with women’s preferences and needs. Physiotherapy based interventions were reported as helping women regain control over their symptoms and life. A need for greater awareness of prolapse and physiotherapy interventions among women, GPs and consultants was identified alongside greater focus on prevention, early diagnosis and regular follow-up. Greater choice and involvement in treatment decision making was desired.ConclusionsAs prolapse treatment options expand to include more conservative choices, greater awareness and education is needed among women and professionals about these as a first line treatment and preventive measure, alongside a multi-professional team approach to treatment decision making. Women presenting with prolapse symptoms need to be listened to by the health care team, offered better information about treatment choices, and supported to make a decision that is right for them.Electronic supplementary materialThe online version of this article (10.1186/s12905-019-0741-2) contains supplementary material, which is available to authorized users.

A systematic review and meta‐synthesis of qualitative studies on pelvic organ prolapse for the development of core outcome sets

“…We included a total of 17 studies that evaluated POPrelated experiences of a total of 497 women by using different methodologies and tools for data collection. The main characteristics of the included studies 4,5,7,8,12,16,[26][27][28][29][30][31][32][33][34][35][36] are presented in Table 1.…”

“…Pelvic floor disorders and their impact on women are addressed in different ways and women's awareness of this condition is widely variable. [3][4][5][6] While some women may not seek medical care or wait for several years before seeking medical care for POP, 7,8 some women only disclose relevant information when asked questions directly about their symptoms and their impact on the quality of life, which also appears highly variable. [9][10][11][12][13] The impact on individual patients but also on clinical practice and research is therefore highly variable.…”

Implementing pelvic floor muscle training for women with pelvic organ prolapse: a realist evaluation of different delivery models

“…Summaries of data from these focus groups were fed back to each site to provide service-user input to service delivery decisions. Findings from the focus groups are published elsewhere [6].…”

“…Existing evidence highlights several barriers to women's seeking help and receiving timely diagnosis for symptoms of POP, including women-related factors (e.g. lack of knowledge about symptoms, shame and embarrassment, difficulty disclosing symptoms) as well as professional-related factors (such as professional's lack of knowledge about prolapse, dismissive response to women's symptoms and lack of proactive intervention) [6,38,39]. This suggests that behaviour change interventions that address these barriers among women and primary care professionals will be required to improve early detection of POP.…”

“…These 'mesh implants' are now known to be associated with significant complications such as pain and erosion [3,5], resulting in their use being suspended in Scotland in 2014 [3] and in the rest of the UK in 2018. However, awareness of POP and conservative treatment options is poor among women [6] and healthcare professionals [7,8].…”