Variation in availability and use of surgical care for female urinary incontinence: a mixed-methods study

Background Urinary incontinence affects between 25% and 45% of women. The availability and quality of services is variable and inequitable, but our understanding of the drivers is incomplete. Objectives The objectives of the study were to model patient, specialist clinician, primary and secondary care, and geographical factors associated with referral and surgery for urinary incontinence, and to explore women’s experiences of urinary incontinence and expectations of treatments. Design This was a mixed-methods study. Setting The setting was NHS England. Participants Data were collected from all women with a urinary incontinence diagnosis in primary care data, and all women undergoing mid-urethral mesh tape surgery for stress urinary incontinence were included. Interviews were also carried out with 28 women from four urogynaecology clinics who were deciding whether or not to have surgery, and surveys were completed by 245 members of the Royal College of Obstetricians and Gynaecologists with a specialist interest in urinary incontinence. Data sources The sources were patient-level data from Hospital Episode Statistics, the Clinical Practice Research Datalink and the Office for National Statistics mortality data linked to Hospital Episode Statistics. Interviews were conducted with women. An online vignette survey was conducted with members of the Royal College of Obstetricians and Gynaecologists. Main outcome measures The main outcome measures were the rates of referral from primary to secondary care and surgery after referral, the rates of stress urinary incontinence surgery by geographical area, the risk of mid-urethral mesh tape removal and reoperation after mid-urethral mesh tape insertion. Results Almost half (45.8%) of women with a new urinary incontinence diagnosis in primary care were referred to a urinary incontinence specialist: 59.5% of these referrals were within 30 days of diagnosis. In total, 14.2% of women referred to a specialist underwent a urinary incontinence procedure (94.5% of women underwent a stress urinary incontinence procedure and 5.5% underwent an urgency urinary incontinence procedure) during a follow-up period of up to 10 years. Not all women were equally likely to be referred or receive surgery. Both referral and surgery were less likely for older women, those who were obese and those from minority ethnic backgrounds. The stress urinary incontinence surgery rate was 40 procedures per 100,000 women per year, with substantial geographical variation. Among women undergoing mid-urethral mesh tape insertion for stress urinary incontinence, the 9-year mesh tape removal rate was 3.3%. Women’s decision-making about urinary incontinence surgery centred on perceptions of their urinary incontinence severity and the seriousness/risk of surgery. Women judged urinary incontinence severity in relation to their daily lives and other women’s experiences, rather than frequency or quantity of leakage, as is often recorded and used by clinicians. Five groups of UK gynaecologists could be distinguished who differed mainly in their average inclination to recommend surgery to hypothetical urinary incontinence patients. The gynaecologists’ recommendations were also influenced by urinary incontinence subtype and the patient’s history of previous surgery. Limitations The primary and secondary care data lacked information on the severity of urinary incontinence. Conclusions There was substantial variation in rates of referrals, surgery, and mesh tape removals, both geographically and between women of different ages and women from different ethnic backgrounds. The variation persisted after adjustment for factors that were likely to affect women’s preferences. Growing safety concerns over mid-urethral mesh tape surgery for stress urinary incontinence during the period from which the data are drawn are likely to have introduced more uncertainty to women’s and clinicians’ treatment decision-making. Future work Future work should capture outcomes relevant to women, including ongoing urinary incontinence and pain that is reported by women themselves, both before and after mesh and non-mesh procedures, as well as following conservative treatments. Future research should examine long-term patient-reported outcomes of treatment, including for women who do not seek further health care or surgery, and the extent to which urinary incontinence severity explains observed variation in referrals and surgery. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 7. See the NIHR Journals Library website for further project information.