Title: Surgical care for female urinary incontinence in England
Funder: Department of Health and Social Care

Abstract: Background: Urinary incontinence (UI) affects one in three adult women, but fewer than 20% of them are actively treated. UI can have a wide-ranging impact on everyday life, affecting employment, social activities and personal relationships. National surveys and clinical audits in the UK have highlighted significant deficits in continence care and a decline in the availability and quality of services, despite an increasing rate of referrals. Rates of surgery for both stress and urge UI have increased over the last decade, mostly due to introduction of new procedures, but there is evidence of inequity in access and service provision, with concerns of under-provision in vulnerable populations. Aim and anticipated impact: The aim of the project is to improve the delivery of surgical care for women with UI. “Surgical care” refers here to surgical approaches and invasive procedures for all types of UI. The focus of the project is on surgical care because there is evidence of considerable variation in use of invasive and relatively expensive procedures and under- and over-provision of surgery in vulnerable groups. We will consider the entire care trajectory starting in primary care to gain an understanding of the determinants that ultimately lead to surgery. Five linked work packages (WPs) will assess the availability and use of surgical services and identify patient, service and contextual factors that have an impact on the delivery of surgical care. We will highlight what is important to patients and formulate recommendations on how equity of access and quality of surgical services can be improved. Research plan: We will start developing coding frameworks for UI and relevant treatments based on an assessment of consistency, completeness and accuracy of ICD10 and OPCS4 codes used in Hospital Episodes Statistics (HES) and Read codes in Clinical Practice Research Datalink (CPRD) data (WP1). Building on these coding frameworks, we will examine variations in rates of surgery between NHS commissioning groups and other relevant regional units and assess their association with supply side characteristics, such as primary care characteristics and availability of secondary care services (WP2). Patients’ expectations, prior experiences, and relationships with medical staff influence what care they feel is most appropriate for them. A literature review will map out how UI touches on issues including embarrassment, identity, sexuality, social relationship and work that will then inform in-depth interviews exploring women’s own accounts of how they make sense of their incontinence, why they decided to consult a health professional, the information they received, how clinical decisions about surgical and non-surgical treatments were made, and to what extent they feel they actively contributed to the decision making process (WP3). Referral patterns will be examined using a linked primary care (CPRD) and secondary care dataset (HES), which includes anonymised patient data from over 600 GPs in the UK. We will study determinants of referral and surgery with multiple regression models including patient characteristics (e.g. age, BMI, ethnicity, socio-economic deprivation) and patterns of prior care (WP4). To get a better understanding of how clinicians make decisions about surgical treatment, we will invite clinicians from the membership of the British Society of Urogynaecology (BSUG) and up to 50 NHS trusts to choose their recommended choice of treatment (surgical, non-surgical or other) for a number of hypothetical simulated patients with varying characteristics described by case vignettes (WP5). This experimental technique will allow us to determine the influence of patient characteristics on clinician’ decisions.

Lay abstract: Urinary incontinence (UI) is the unintended leakage of urine during normal everyday activities. It is a very common condition that has a significant impact on a woman’s well-being. While many treatments are offered in primary care, such as lifestyle changes and drugs, surgical care can be recommended if symptoms persist after lifestyle changes and drug treatments. New surgical techniques have been developed and others improved in the last decade. The number of women having surgery for treatment of UI is gradually increasing. There are concerns about the availability and quality of the care for women with UI, especially with respect to surgical treatment. It is not known whether the rate of surgical procedures is appropriate or uniform across hospitals or whether access differs by age, ethnicity and socio-economic background. There is a lack of information about the factors that have an impact on women’s treatment preferences and how GPs or hospital doctors decide on whether or not they should recommend surgery. The aim of this research is to improve the delivery of surgical services for women with UI. We will have five linked studies. First, we will assess how accurately and completely the data on UI are recorded in existing national datasets of primary and secondary care and develop ways to make best use of these datasets. This methodological work will form the basis for two further studies: an investigation of the variation in care and surgical treatments across localities in England and an exploration of the factors that determine whether patients are referred to secondary care and whether they have surgical treatment. In the fourth study, we will explore the perspectives of women with UI using in-depth interviews. We will recruit up to 60 patients with diverse characteristics from outpatient clinics to describe their experiences of having UI in everyday life, their encounters with professional staff around this problem, and the treatments they have received. The face-to-face interviews will explore a wide range of issues, including how UI is linked to shame and embarrassment, sexuality, and relationships with others. Finally, a fifth study will show how hospital clinicians make decisions about whether surgery should be recommended. We will use a series of “paper patients” describing important patient characteristics and ask the clinicians to score on a rating scale how likely it is that they would recommend surgery for each of these paper patients. These scores will be analysed to reveal how much “weight” the clinicians place on each of these patient characteristics. We have chosen to use this technique as it will considerably reduce the burden of data collection. These studies will highlight what aspects of surgical care are particularly important to patients and how they can be improved or better integrated in the services that are already available. The results will enable commissioners, clinicians, hospital managers, policy makers to raise the standards of care for all women with urinary incontinence. The Research Team includes clinicians, commissioners, researchers, and public and patient representatives with expertise in health services research and the treatment of UI which will ensure successful completion of the study. The team also has direct access to relevant professional and patient groups which will ensure an effective means of disseminating the implications for practice to the NHS and the wider public.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: RENAL AND UROGENITAL