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Abstract Background Female urinary incontinence is underdiagnosed and undertreated in primary care. There is little evidence on factors that determine whether women with urinary incontinence are referred to specialist services. This study aimed to investigate characteristics associated with referrals from primary to specialist secondary care for urinary incontinence. Methods We carried out a cohort study, using primary care data from over 600 general practices contributing to the Clinical Practice Research Datalink (CPRD) in the United Kingdom. We used multi-level logistic regression to estimate adjusted odds ratios (aOR) that reflect the impact of patient and GP practice-level characteristics on referrals to specialist services in secondary care within 30 days of a urinary incontinence diagnosis. All women aged ≥18 years newly diagnosed with urinary incontinence between 1 April 2004 and 31 March 2013 were included. One-year referral was estimated with death as competing event. Results Of the 104,466 included women (median age: 58 years), 28,476 (27.3%) were referred within 30 days. Referral rates decreased with age (aOR 0.34, 95% CI 0.31–0.37, comparing women aged ≥80 with those aged 40–49 years) and was lower among women who were severely obese (aOR 0.84, 95% CI 0.78–0.90), smokers (aOR 0.94, 95% CI 0.90–0.98), women from a minority-ethnic backgrounds (aOR 0.76, 95% CI 0.65–0.89 comparing Asian with white women), women with pelvic organ prolapse (aOR 0.77, 95% CI 0.68–0.87), and women in Scotland (aOR 0.60, 95% CI 0.46–0.78, comparing women in Scotland and England). One-year referral rate was 34.0% and the pattern of associations with patient characteristics was almost the same as for 30-day referrals. Conclusions About one in four women with urinary incontinence were referred to specialist secondary care services within one month after a UI diagnosis and one in three within one year. Referral rates decreased with age which confirms concerns that older women with UI are less likely to receive care according to existing clinical guidelines. Referral rates were also lower in women from minority-ethnic backgrounds. These finding may reflect clinicians’ beliefs about the appropriateness of referral, differences in women’s preferences for treatment, or other factors leading to inequities in referral for urinary incontinence.

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.

Objective To examine geographic variation in use of surgery for female stress urinary incontinence (SUI), mainly midurethral mesh tape insertions, in the English National Health Service (NHS).Design National cohort study.Setting NHS hospitals.Participants 27 997 women aged 20 years or older who had a first SUI surgery in an English NHS Hospital between April 2013 and March 2016 and a diagnosis of SUI at the same time as the procedure.Methods Multilevel Poisson regression was used to adjust for geographic differences in age, ethnicity, prevalence of long-term illness and socioeconomic deprivation.Primary outcome measure Rate of surgery for SUI per 100 000 women/year at two geographic levels: Clinical Commissioning Group (CCG; n=209) and Sustainability and Transformation Partnership (STP; n=44).Results The rate of surgery for SUI was 40 procedures per 100 000 women/year. Risk-adjusted rates ranged from 20 to 106 procedures per 100 000 women/year across CCGs and 24 to 69 procedures per 100 000 women/year across the STP areas. These regional differences were only partially explained by demographic characteristics as adjustment reduced variance of surgery rates by 16% among the CCGs and 35% among the STPs.Conclusions Substantial geographic variation exists in the use of surgery for female SUI in the English NHS, suggesting that women in some areas are more likely to be treated compared with women with the same condition in other areas. The variation reflects differences in how national guidelines are being interpreted in the context of the ongoing debate about the safety of SUI surgery.