Abstract
Keywords
“…the approach advocated by the Optimum Continence Service Specification can deliver benefits regardless of the healthcare system in operation…”
Incontinence is classed as a set of diseases by the World Health Organization affecting –8% of the world's population, and at least 400 million people worldwide [1]. While it can affect anyone, it is more prevalent in women who can be more prone to it during pregnancy or after childbirth, or who can develop bladder or pelvic floor problems in middle age or later life. Currently, incontinence affects between 25 and 45% of women globally [2], with between 30 and 60% of middle aged and older women suffering from it [3].
Yet despite its high and growing prevalence, incontinence is one of the least discussed and most poorly understood conditions in public, health professional, policy maker and payer circles and more needs to be done to address this.
A rising challenge
Incontinence is a rising challenge for all of us in the context of an ageing population, and perhaps more so for women who in many countries have a higher life expectancy than men. But this is not just because it is a problem typically associated with advancing years. It is also related to other chronic conditions such as dementia, diabetes and heart disease all of which can leave suffers with continence issues.
The problem is that while incontinence may not be life threatening, it can have a devastating effect on the quality of life of a sufferer, their family or carer. Aside from the obvious social stigma, it can be one of the major triggers for elderly or other dependent patients to move into a more permanent care setting.
There are also a number of associated conditions resulting from incontinence which impact people's lives negatively. These include a propensity to contract urinary infections, to become depressed, to have falls or to experience discomfort from damage to the skin. All of this adds to the demand on healthcare systems everywhere.
Incontinence can also have a significant economic impact, both in terms of ‘direct costs’ relating to health and social care, ‘indirect costs’ due to lost productivity for patients and their carers, and ‘intangible costs’ in terms of the financial burden of the disease on sufferers.
So what can be done to address the burgeoning challenge presented by incontinence, and how can care delivery be reconfigured, to make it more effective for women suffering from the disease while also making the best use of available budgets?
Guidance on configuring continence services
Addressing this challenge was the primary motivation behind a report called the ‘Optimum Continence Service Specification’ [3], which was initiated by Svenska Cellulosa Aktiebolaget and written by an eminent panel of multidisciplinary experts in collaboration with KPMG LLP, UK. It fills the gap that existed for clear guidance for payers, policy makers and providers across the globe about how best to configure services to deliver cost-effective, evidence-based and high-quality patient-centered care.
The report analyses some of the weakness in the current continence care pathway and sets out a number of recommendations which can be adapted to suit local variations in practice, resources and culture around the globe, to improve the identification, assessment and the initial treatment of incontinence. It also looked in some depth at four countries – USA, UK, India and The Netherlands, each of which present different challenges in terms of the local healthcare environment, to see how this ‘blueprint’ could be applied.
Improving continence care in the UK
The report makes a number of recommendations regarding measures which, if adopted, could help to ensure incontinence sufferers in the UK enjoy a better quality of life, manage their care in the community for longer and have less need for acute services.
First, it suggests a need for patients to be seen at the right time by the right professional, recommending greater involvement of nurse specialists in assessment and treatment, so that more conservative options can be considered before referral to a specialist is made.
Evidence from a recent incontinence study in Leicestershire (the Leicestershire MRC Incontinence Study) [4] suggests that appropriately trained nurses can lead a continence service and provide conservative treatment very effectively and to the satisfaction of patients. As a result it determines that UK continence nurse specialists are also well suited to performing the role of case coordinator.
Access to better training is also important for general practitioners to ensure they are better able to assess and treat patients, educate them and make the right referrals for specialist treatment.
The agreement of Commissioning for Quality and Innovation incentive payments between the commissioner and provider of services could be effective for driving up the quality of care. This might include targets for reducing the use of in-dwelling catheters or the numbers of hospital admissions, for example. At the very least, by linking the achievement of continence-related quality outcomes to payments, levels of awareness of the importance of continence care are likely to rise among UK general practitioners.
In the same way, performance incentives could also be linked to metrics such as patient-reported outcome measures and patient-reported experience measures. Equally, audit tools such as those produced by the UK National Institute for Health and Care Excellence could be helpful as a way of monitoring the effectiveness [5].
Improving continence care in The Netherlands
Looking at The Netherlands, the report suggests that care should be shifted to the primary care setting, where an increased number of continence care nurse practitioners should be located.
This could be achieved by training up existing Higher Professional Education (HBO-level) continence nurses – there are over 350 currently in the field – to work in primary care to assess/treat patients and prescribe the most appropriate containment products for the needs of the individual, freeing other practitioners such as home care agency staff and pharmacists to prioritize case detection.
Their specialist nursing training would help them when they liaise with home care agencies and continence nurse specialists based in secondary care to address care needs arising from other morbidities as well as nonmedical care needs.
In addition, enabling more efficient and effective early assessment and conservative treatment approaches before referral to secondary care, would ensure greater cost–effectiveness throughout the complete care pathway.
The report also suggests that technology can play an important role to drive the adoption of best practice in The Netherlands. ParkinsonNet [6], an innovative IT-enabled network, is one such example and could be a useful source of learning for continence care services in The Netherlands.
Improving continence care in the USA
When it comes to improving continence care in the USA, the report concludes that fundamental changes are needed in the healthcare economy in the form of more clearly defined pathways between different types of care provider and closer integration between health and social care. Another finding is that a concerted public health campaign is required in the USA to raise the profile of continence care as a medical problem and encourage people to seek help. Raising the profile of the condition could also help raise awareness among primary care providers who are perfectly placed to take on the role of case detection, but who currently have a poor track record in doing so.
When it comes to support in the community, it is clear that this can be challenging to implement because of the lack of available healthcare infrastructure in the USA. However, greater use could be made of Federal Government funded resources such as rural health clinics to deliver this.
The increasing role of Accountable Care Organizations in the USA is highlighted in the report as a way to promote more conservative treatments as well as more integrated care, although there is a potential challenge in ensuring that the majority of patients exhibiting symptoms get access to low cost services, combined with a swift method of referral to a specialist when required. Accountable Care Organizations may also find themselves in the useful position of being able to specify requirements for providers to share their datasets and insights from their analyses. This can potentially be used to perform predictive analytics – to identify patients who are most at risk of developing incontinence, and redesign the service for detection and early intervention.
Nurse-led continence services would be well equipped to meet these requirements by: coordinating care with an informal care giver; acting as a facilitator together with other specialists providing evidence-based continence care and making best use of technology to enable self-care and to share information among healthcare professionals.
When it comes to performance measurements which could encourage insurers and continence care providers to excel, the report cites the rating system adopted by the Centers for Medicare and Medicaid Services, which results in premiums being adjusted according to how plans perform.
Improving continence care in India
Given the current limited provision of continence care in India and basic healthcare infrastructure across large swathes of the country, the challenges are significantly different compared with the other countries examined in the report. In particular, because there is a shortage of qualified nurses in India that can operate independently from doctors, there is a need to train up a new group of medical staff to deliver basic treatment. However, in light of the challenges faced by the health system simply training up doctors may not be the answer, and there is a need to draw on health workers who lack formal medical training but have an interest in improving their knowledge of continence care. By creating satellite clinics run by teaching hospitals, these healthcare workers could help patients care for themselves more effectively and identify those who would benefit from specialist assessment and treatment.
Alternatively, it could be possible to tap into the existing network of alternation medicine practitioners who, armed with the appropriate training, could assess and treat patients in the community.
While case coordination may not be a realistic component in India, it will be important that healthcare professionals providing continence care communicate effectively with patients and caregivers alike to give the best chance of treatment concordance and best treatment solutions to address the holistic needs of the patient.
One of the biggest challenges around continence care in India is the low awareness of the condition as well as the associated stigma. An aggressive long-term awareness campaign is needed to raise the issue with the public, patients, healthcare professionals and health system administrators. More needs to be done to provide national insurance cover and make containment products more affordable and available so that sufferers' quality of life is not compromised.
Finally, simple mobile technology could play an important role in India as it has done in other parts of the developing world, for example, Africa, to improve prevention, surveillance, self-management and compliance.
A more collaborative approach
As these four country examples demonstrate, the approach advocated by the Optimum Continence Service Specification can deliver benefits regardless of the healthcare system in operation and there are a number of common elements which should be applied.
First, there is a pressing need for policy makers and payers to place greater focus on continence as a health and social care issue and devote adequate funding and resources to it.
Second, practitioners need to adopt a more collaborative approach to continence care, breaking down traditional silos between health and social care, general practice and medical specialisms, with the role of case coordinators being crucial to enabling a more holistic, patient-centered approach to treatment.
In particular, greater focus is needed in terms of more robust referral pathways to detect, assess and treat women with incontinence to provide timely and effective care; thinking around how and where care is delivered (ideally by specialist nurses in primary care rather than an acute setting); the provision of appropriate training for professionals in charge of the initial assessment and treatment and more emphasis on self-management of the condition alongside specialist support to empower sufferers and reduce the cost of care. In addition greater use could be made of advancements in technology such as telehealth and medical devices to enhance standards of care which have the potential to make a real difference to professionals and patients alike, enabling people to live in the community for longer reducing or delaying the need for hospital admissions or long-term residential care.
When it comes to improving standards in continence care, the report suggests that outcome and performance measures should be linked to financial incentives to motivate healthcare providers to provide the best possible care for patients. This would include sharing outcomes and performance data in the public domain and reporting results to patients, staff, payers and health systems administrators.
Conclusion
The principal conclusion of the Optimum Continence Service Specification is the need for widespread adoption of a more holistic, collaborative and integrated approach to assessment and treatment of incontinence everywhere.
It is strongly believed that by dealing with incontinence via the recommended integrated approach, resources can be freed up for healthcare services and deployed more efficiently for those that need them, and the burden of disease and care can be alleviated for women and men suffering from incontinence as well as their carers.
It is hoped that the contents of this report will go some way to stimulating a constructive debate and help to raise the bar in terms of the way that care is organized for incontinence sufferers everywhere in the future.
Financial & competing interests disclosure
M Parvaiz is employed by Svenska Cellulosa Aktiebolaget, which initiated the Optimum Continence Service Specification. The author has no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.
No writing assistance was utilized in the production of this manuscript.