Abstract
Introduction
Examples of genital disease.
Epidemiology of genital disease
Genital diseases are very common. Unfortunately, due to patient perceived stigma associated with the disorders, many patients delay seeking medical attention and self-treat. Incidence and prevalence rates are therefore likely to be under-estimated. Delays of up to 10 years have been reported between the onset of symptoms and definitive diagnosis. 1 One study of dermatology patients found that 20% had genital pruritus; however, no patients had spontaneously disclosed the symptom until directly asked. 2
Current services in the UK
The first point of care for many patients will either be a general practitioner or walk-in sexual health clinic. From here, a proportion will be referred for specialist assessment to genitourinary medicine, dermatology, gynaecology, urology, paediatrics, colorectal or general physicians if the genital disorder is associated with other systemic features. The British Vulval Health Survey 2015 found that 75% of women with vulval conditions surveyed received treatment from their general practitioner, 67% from gynaecologists, and 42% from dermatologists. 3 Less commonly, patients may be referred or present with genital disorders to oncology, infectious diseases physicians, HIV physicians, oral medicine or rheumatology.
In recent years, there has been a rise in the public seeking help from healthcare professionals through media sources such as “Embarrassing Bodies,” particularly for conditions considered to be embarrassing. In addition, patients may self-diagnose or treat on the basis of information available on the internet. Patients seek advice from pharmacists with a view to self-treating with over-the-counter medications. Women tend to initially self-treat for thrush, 4 whereas men may be more likely to present to community sexual health services (genitourinary medicine). 5
Issues facing the management of genital disease in the UK
Challenges include developing services that encourage individuals to seek help early, as well as providing readily available, safe and fast delivery of care. The distribution of the estimated 79 dedicated vulval services in the UK shows that many areas of the country are underserved. 6 Where services are available, they often exist as a result of clinician-led initiative and are frequently heavily oversubscribed. 7 One study found that 61% of women referred to a university hospital with a diagnosis of refractory vulvodynia were found to have clinically relevant pathology on biopsy, leading to an alternative and definitive diagnosis. 8 One-third of men with male genital lichen sclerosus report being symptomatic for more than two years before definitive diagnosis and treatment. 5
Training in genital disease varies significantly between different medical specialties, reflecting different approaches in diagnosing, and managing these conditions. Vulval diseases are commonly seen by gynaecologists. An Advanced Skills Training Module in vulval disease was set up in 2007 for obstetrics and gynaecology specialist registrars. However, only 18 clinicians completed it in the first six years, and fewer continued to work in vulval clinics. 7 This may be due to a variety of reasons including study leave, financial constraints, and a lack of experienced senior role models to enthuse them to maintain and develop skills in this area.
Genitourinary medicine specialists also treat a significant proportion of genital disease. Almost all genitourinary medicine clinics (91%) manage genital dermatoses in-house. 9 Their training curriculum requires knowledge of common conditions. 10 However, there is no minimum number of clinics trainees must attend. Lack of exposure may explain why genitourinary medicine clinicians report a lack of confidence in managing atypical vulval pain, in using topical steroids, and in relevant practical techniques. 11 The National Guidelines from the British Association of Sexual Health and HIV (BASHH) advocate onward referral of certain genital dermatoses to dermatology,12,13 suggesting that the expertise is felt to lie with dermatologists. However, genitourinary medicine clinicians have great expertise in the genital exam and are well placed close to patients’ homes in community sexual health departments, where patients are often present. Additionally, there is keen interest in the subspecialty, with a genital dermatology special interest group within BASHH.
The English dermatology curriculum requires a robust basis of knowledge in male and female genital dermatoses, infectious diseases and HIV, 14 as well as practical procedures such as biopsies, interpretation of histopathology reports, examination of extra-genital skin, and use of medical photography. Dermatologists commonly treat paediatric genital dermatoses, such as lichen sclerosus and vulval dermatitis. Whilst dermatologists may have the expertise to treat genital dermatoses, the specialty’s current and worsening workforce statistics present a significant challenge. The ratio of consultant dermatologists to the general population is much lower than in the rest of Europe, with 1 consultant per 130,000. 15 Currently 1 in 10 consultant dermatology posts are unfilled in the UK, and training posts have been reduced in many areas.
Genital disease services outside of the UK
Elsewhere, dermatology and venereology form one specialty, seeing a greater proportion of patients with genital disease. This includes many European countries and some Asian countries such as Thailand. A multidisciplinary approach is considered gold standard in the UK and elsewhere. 16
Future directions for management of genital disease
Genital diseases represent a common and complex group of disorders. An approved, accredited, national cross-specialty training curriculum alongside a multidisciplinary approach would provide streamlined, high-quality services throughout the National Health Service (NHS) in the UK.
As highlighted in the NHS Five Year Forward View, patients also have responsibility for their own health. 17 We need to facilitate this by promoting understandable and evidence-based information regarding their symptoms, correct diagnosis and management. Resources should be directed to educating patients and encouraging them to seek medical help. Self-help groups are another crucial aspect of self-care, providing a support network for people who feel stigmatised and isolated by their disease. In the UK, the British Vulval Pain Society, British Society for the Study of Vulval Disease (BSSVD), and the Association for Lichen Sclerosus and Vulval Health are available for women, and there may be a role for a similar organisation dedicated to men with genital disease. Vulval conditions have a higher profile than penile conditions, perhaps in part reflecting the strength of the organisations that female patients have formed.
Public health campaigns, such as sex and relationship education in schools are effective educational tools. A greater public awareness of the potential harms of indiscriminate use of female intimate hygiene products would be beneficial. Manufacturers such as Femfresh continue to make genitals a taboo subject in their advertising campaigns 18 and promote an unrealistic expectation that genitals should be fragranced. Men should be taught about good hygiene, as evidence suggests that dribbling of urine contributes towards male genital lichen sclerosus 5 and penile cancer. Due to embarrassment, men often delay presentation of penile malignancies that require disfiguring surgeries as a result of their late stage. This is preventable, and a culture of self-examination must be fostered, as well as prevention of cigarette smoking and sexually transmitted infections.
Inevitably, patients will always present to a variety of specialties. A separate, focused curriculum leading to a qualification, such as a diploma, may ensure a high standard of training in genital disease across different specialties. Alternatively, the existing Advanced Skills Training Module offered by Gynaecology could be expanded. See Figure 1 for a suggested pathway for clinicians wanting to gain a special interest in vulval disease. Qualified clinicians, including nurse specialists, could then provide services in community genitourinary medicine clinics, providing care closer to patients’ homes. More complex conditions could be treated in hospital settings that facilitate a multidisciplinary approach. Research suggests that 38% of women attending a vulval clinic required consultations with two or more specialties.
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This is likely to be due to the differing expertise between specialties, for example, the ability to biopsy, or manage Vulval Intra-epithelial Neoplasia. Excellent communication between different specialists is essential for continuity of care, especially when joint cross-specialty clinics are not feasible due to lack of specialist workforce, and financial constraints. Embracing the increasing use of information technology, such as a system that allows patient-held notes on smart phones, could enhance continuity of care and patient education.
Proposed pathway for clinicians wanting to gain a special interest in vulval disease.
In addition to clinicians and nurses, psychologists have a role to play in the treatment of genital disease. Increased importance should be placed upon their inclusion in the multidisciplinary team. Currently, there is little psychological support available to patients despite the impact the diseases can have on quality of life, 4 mainly due to financial constraints. The psychological and psychosexual impact of dermatological conditions is often under-recognised, despite being similar to other chronic diseases such as asthma and arthritis. 20 One in five women with vulval disease have either self-harmed or contemplated suicide as a result of their condition. 3 Only 36% and 26% of vulval clinics audited reported having access to psychosexual counselling and psychotherapy, respectively. 7 The situation is similar for physiotherapy services, which are particularly important for treatment of vulvodynia. Patients frequently have to privately fund these services themselves. These examples are common despite the NHS Constitution, which states that mental and physical health will be treated in equal regard, regardless of the individual’s ability to pay.
Conclusion
Genital diseases represent a significant burden of disease and profoundly affect quality of life for large numbers of men, women and children. The future will hopefully see further development of cross-collaboration between different specialties in managing these conditions. An established and recognised training curriculum across specialties may be a welcome addition to aid standardisation of care. Continuing to embrace public campaigns, media and advances in web technology will improve education of these disorders.