Impact

The prevalence of urinary incontinence (UI) in community-dwelling middle-aged and older women is estimated to be between 30% and 60% depending on definition and the population in which the study occurred [4], [5], [6], [7], [8], while the pooled overall prevalence rates of UI in community-dwelling men range from 5% to 32% [1]. Faecal incontinence (FI) occurs at all ages and in both sexes, affecting 1% to 20% of adults, depending on the definition used by individual studies [1].

The impact of incontinence on quality of life is significant [9], and includes social embarrassment, reduced employment, work productivity and leisure opportunities, social exclusion, and a significant strain on the relationships between patients and their partners or informal caregivers [10]. The Canadian National Population Health Survey (1996/7) rated the effect of UI behind only Alzheimer’s and stroke in people aged 12 and older, and highest in younger patients (those aged 45 years old and under) [11]. A more recent study in Taiwanese women has confirmed the greater impact of incontinence on quality of life compared with other major chronic conditions [12].

There is also a significant impact on the caregiver; incontinence is one of the most common reasons for a person moving to long-term institutional care [1], [13]. In studies, caregivers found dealing with the following factors particularly difficult: the care-giving burden of managing urine leakage and/or taking the patient to the toilet regularly [14], psychological strain due to the full-time nature of the role [15], restriction in leisure opportunities and social interactions [16], changes in the nature of their relationship e.g. daughter/son or wife/husband to intimate nursing role [14], and feelings of guilt causing the caregiver to ‘hang on’ to responsibility for caring past the point where they are truly managing the care load [17].

Incontinence presents a significant health and economic burden comparable with major global diseases such as arthritis and pneumonia [18]. There are direct costs related to health and social care – these may be covered by the public payer/health insurer, out of pocket payments by the patient or caregiver, or a mixture of the two [19], [20]. There are also indirect costs such as the opportunity costs of caregivers and patients, e.g. removal from the workforce [20]. The health economic impact of incontinence is projected to increase substantially in developed countries as populations age [18].

Current problems with service delivery

Current continence care service delivery does not adequately address this health and social care burden [21]. This is particularly true for case finding and provision of initial treatments, perhaps as a result of the relative lack of continence-related content in higher education training across the major healthcare professional disciplines [22], [23].

Current evidence suggests that routinely trying conservative treatments before surgical interventions is likely to be the most cost-effective treatment strategy [24], [25], [26]. Community-delivered continence services do appear to be cost effective [27].

Low levels of integration of continence services result in duplication of provision, concentration of services in specialist centres and relatively low provision of community-based care [21], [28]. Additionally, provision may be dictated by imbalances in the level of reimbursement versus the true cost of providing treatment. For example, in the United States, fee-for-service reimbursement has incentivised specialist provision of non-specialist activities across many common medical conditions [29]. In the case of continence care, this results in a bias towards surgical intervention over more conservative treatment strategies [30], [31], as well as overuse of expensive and often unnecessary investigations such as urodynamic testing [32].

In many countries, but particularly low income ones, incontinence is not usually a priority with only basic levels of practice performed by community care providers, if at all [33]. Many of the problems in continence care in these countries are related to the immaturity of the wider healthcare system [3]. Addressing continence care needs while these countries develop their healthcare infrastructure will likely require innovative solutions to make the most of limited resources.

Given the economic impact of incontinence and the lack of comprehensive services for continence care globally, this study aimed to provide an evidence-based specification for the procurement and organisation of continence care.

Evidence gathering

Recognising the paucity of data in this area, evidence was obtained from a variety of sources. The grey literature was also searched to include governmental and professional society reports and guidelines and relevant policy documents. Data were supplemented by qualitative findings from semi-structured interviews with clinicians, patients, patient-representatives and policy experts around the world.

Semi-structured interviews.

Forty-seven interviews were conducted with representatives from a variety of backgrounds based in different geographies. Interviewees included: payers, policy experts and influencers, academic researchers with an interest in incontinence, patients, patient group representatives, caregivers, physiotherapists, nurses, urologists, gynaecologists and primary care practitioners. Potential interviewees were identified from the literature search and approached to take part in the study.

For the interviews there was a focus on four particular countries (Figure 1): United Kingdom, Netherlands, United States and India. These four countries represent a spectrum of different healthcare/funding systems: socialised (UK), social insurance (Netherland), out-of-pocket (India) and varied (US).

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Figure 1. Interviewees by country.

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Interview questions (Figure 2) covered five main subject areas: the policy context, public awareness of incontinence, current service provision in continence care, care outcomes, and patient groups and access.

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Figure 2. Interview subject areas and questions.

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Synthesis of evidence and drafting of service specification

Authors agreed on the principles to which they would adhere when considering the collected evidence and drafting the service specification (Figure 3).

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Figure 3. Underlying design principles in the development of a care service specification for incontinence.

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The articles were read and interview findings noted. Key themes were identified and explicitly incorporated into discussions amongst the panel. Consensus method was used to establish the key recommendations of the service specification. Where there was disagreement regarding the evidence or the rationale for/against a particular point a majority opinion was required for resolution. There were no instances where recourse to formal voting was required. The four members of the panel, along with the research team, met twice face to face and fortnightly by teleconference throughout the conduct of the study. There were five formal evidence synthesis meetings during the conduct of the study, all conducted by teleconference.

Validation of service specification

In order to confirm the broad applicability of the service specification in various countries, the draft service specification was sent back out to a number of experts for review. In particular, interviewees were asked to comment on the appropriateness of the service specification for their particular geography, but also with respect to four patient profiles which the EP developed (Figure 4). This is because each profile of patient has its own specific health and social care considerations, including specific clinical guidelines. Feedback was noted and discussed by the EP. Consensus method was again used to decide whether there was sufficient evidence to change the service specification.

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Figure 4. Patient profiles.

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Ethical approval

The conduct of this study including consent procedure was approved by the Human Research Ethics Board of the University of Alberta. Given that the interviews were conducted over the telephone covering differing countries and time zones, informed verbal consent from interview participants was gained prior to the interview and affirmed in writing by the interviewer.

Search results

From the combined searches, 4752 studies were returned, of which 312 were selected following review of the abstract. Of these, 101 articles met the inclusion criteria (Figure 5).

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Figure 5. Results of search for articles relating to the organisation of continence care services.

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Key themes arising from literature review and moderated panel discussions

The EP considered the results of the literature review and the interview findings as an integrated body of evidence. Discussions concentrated on considering all of the results together regardless of the original source. The resulting themes from the activities are outlined below.

Development of the Care Service Specification

Given the wide variety of healthcare systems and policy contexts, the EP recognised that there was no single model that would be appropriate to all healthcare systems. In order to create an internationally-applicable service specification, a modular approach, aligned to the agreed design principles, was taken which allowed sensitivity to variables in different healthcare localities and the ability to “pick and choose” service elements.

The modular service specification delineated essential components of a comprehensive continence care service. These were: 1) case detection, 2) initial assessment and treatment, 3) case co-ordination, 4) caregiver support, 5) community-based support, 6) specialist assessment and treatment, 7) use of containment products, and 8) use of technology (Figure 6).

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Figure 6. Components of a continence care service.

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Key recommendations were:

• Ensure ease of access by the establishment of robust referral pathways from detection of incontinence through to appropriate assessment and treatment;
• Shift the responsibility of basic continence care away from primary care physicians to continence nurse specialists in primary care, where available;
• Where continence nurse specialists are unavailable, train existing healthcare professionals such as primary care-based nurse practitioners, community nurses, physician’s assistants, or, in developing countries, local community healthcare workers, to provide evidence-based continence care;
• Where possible, use a case co-ordinator to ensure collaborative working, especially to help delay or prevent admission of patients to permanent care settings; given the general trend to more integrated clinical pathways, in particular concerning patients with multimorbidities, it is necessary to strike a balance between specialisation and holistic case management approaches;
• Promote use of self-management tools and techniques; provision of information on the use of containment products; use of enabling technologies; an emphasis on shared decision-making between healthcare provider and patient/caregiver; and educational campaigns on the nature of the illness and treatment strategies;
• Specialists should be well integrated with other parts of the care pathway. They play a key role in quality governance, training and the dissemination of best practice;
• Use a comprehensive assessment of user, product, and usage-related factors to assess the needs of patients and caregivers with regards to containment products. This process should be standardised, valid and easily reproducible. The final decision regarding choice of product should remain with the end-user: the patient and/or their informal or professional caregiver;
• The use of technology should be integral to the delivery of continence care. Technology should enable self-care and connect patients, caregivers and enable providers to monitor progress and troubleshoot problems;
• For payers: in order to provide the highest quality continence care, ensure care standards are incentivised. This can be achieved through stipulating the achievement of targets on certain outcome and operational measures, careful use of quality-related financial incentives, emphasis on clinical governance and optimal pricing that is most strongly correlated to the true cost of providing a service;
• Establish accredited programmes of training for 1) nurses wanting to become continence nurse specialists, and 2) other health or social care professionals such as social workers wishing to improve their competence in delivering continence care.

These recommendations formed the basis of a more comprehensive document setting out how best to deliver continence care, File S1 Optimum service specification complete.

Robust referral pathways

The route from detection of symptoms through to the receipt of evidence-based care is a critically important path. There are a number of ways in which people may gain access to a service and become patients.

In developed healthcare systems the first contact, if initiated by the patient, is likely to be with the primary care physician [35]. However, primary care physicians often have limited knowledge of established evidence-based clinical guidelines [36], [37], [38]. The implications of this shortfall for the delivery of conservative treatments are discussed later, but one consequence is the lack of awareness of services to which to refer in order to ensure delivery of quality evidence-based care for the patient. Providers of home care are not necessarily better equipped than primary care providers to manage a person with incontinence correctly [39], and similarly may resort to prescribing incontinence pads without adequate clinical assessment.

Healthcare professionals from a variety of disciplines will need to know how to help guide the patient to receive effective treatment. Improving case detection is not straightforward and will require robust pathways of referral from case detection through to appropriate assessment and treatment.

The role of continence nurse specialists

Initial assessment and treatment may be optimally enacted by a dedicated local nurse-led continence service, which may be situated either in the community or could be co-located with a specialist clinic.

Nurses with appropriate training are capable of managing and treating incontinence more effectively than primary care physicians [27], [40], [41], [42]. They are also able to triage and independently manage a significant proportion of patients [43], [44], especially geriatric nurses who are managing other chronic diseases [45] There is evidence that patients appreciate the communication skills and comprehensive continence care provided by nurses [46], [47].

There is no conclusive evidence that the direct costs of providing a nurse-led service are more or less than a physician-led service [27], [41], [48], [49]. The cost-effectiveness of nurses versus physicians depends on a number of factors such as: the salary differential between nurses and doctors, the differences in productivity, and outcomes achieved.

The majority of evidence for the effectiveness of nurse specialists in continence care originates from the United Kingdom, the United States, the Netherlands, Canada, Australia and Sweden (urotherapist model) which limits the generalisability of the findings. We can only recommend this model in countries where nurses have the funding, support and training programmes required to substitute for physicians, otherwise initial assessment and treatment can be performed by trained local community health workers.

The role of the case-coordinator

Self-reported ‘integrated’ continence services have been shown to provide higher-quality care [50] and have demonstrated positive outcomes in other chronic diseases. for example in patients with diabetes and depression [51]. A simple disease management approach for chronic obstructive pulmonary disease involving the use of a case manager significantly reduced emergency department visits and hospital admissions [52]. A case co-ordinator is able to provide a single point of contact that can co-ordinate the multiple agencies involved in providing continence care.

When the patient is suffering from a complex primary illness, it is important to avoid duplication of care [53]. For example, elderly patients will often have a complex array of conditions with associated health and social care needs that require a wider lens than that provided by a continence case co-ordinator. In these circumstances, the case co-ordinator will take a more facilitative and advisory role, filling in the gaps in care and care co-ordination where they exist. The role would then be one orientated more around providing input on appropriate health and social care interventions to other specialist nurses or acting as a gate-keeper/triage service to each of the available components of the continence service [43], [54].

The role of specialists

According to international clinical guidelines, specialists in continence care should be focused on those with severe symptoms or who are unresponsive to conservative treatment strategies, complex patients and those with a clear indication for more invasive treatments [55]. For example, patients with neurological incontinence, those with FI and frail elderly incontinent patients each have their own distinctive profiles, health and social care needs.

While providers of specialist assessment and treatment should probably be separate from those providing initial assessment and treatment it is important that there is operational integration with other components of the service.

Specialists also have an important role in facilitating the sharing of best practice and training as well as in quality governance. The integration of an academic centre with a community-based service has proven to be challenging in the past with barriers to overcome regarding funding sources and existing healthcare infrastructure [56].

Containment products

The use of containment products is an important element in the management of incontinence. Containment products should be provided during the treatment process or when cure is not possible through a strategy of ‘contained incontinence’.

Where provided, patients are often left wanting by prescriptions that are not sensitive to clinical need, and are insensitive to the needs of patients [57]. The international standard for the evaluation of containment products (ISO 15621∶2011) recommends consideration of a number of factors separated into three categories: user-related factors such as quality of life, independence, needs; usage-related factors such as care setting, needs of caregiver, ease of handling of product in relation to care setting, total costs; and product-related factors such as freedom from leakage, skin health, comfort.

Where continence care services also fund the provision of products, the introduction of a standardised assessment tool should reduce variation in provision. The needs of each patient should be reassessed periodically to ensure appropriate consumption of products, reducing the need for rationing of products.

In order for patients and formal and informal caregivers to make informed decisions regarding containment products, patients should be provided with information on the types of products available and factors to consider when making the choice [58]. Where available this should be supplemented with samples to test the best possible product or combinations to suit patients and their caregivers’ needs.

The role of technology

Technology can potentially enhance current models of continence care. While some population groups are still disadvantaged in access and skills with which to use ICT applications, further development will depend on patients’ acceptance, cognitive abilities and affordability. There is potential for collaborative development of several areas which may enhance care delivery.

The use of telehealth services can connect healthcare professionals to patients with limited physical access to services e.g. those who live in rural areas. Potential uses include video consultations and remote monitoring. Telehealth could fill the gaps where resources and manpower are lacking. The use of mobile SMS text messaging for prevention, surveillance, self-management and compliance in developing countries is well established [59] and there is no obvious reason why such a medium could not work well in developed healthcare systems.

There are a number of uses and roles for the internet in the delivery of continence care. Internet-based treatments that include e-mail support and cognitive behavioural exercises have been shown to be effective. Mobile applications that aim to deliver the same treatments are currently under investigation [60]. Other tools and arrangements based on the internet include self-assessment tools [61], facilitated patient networks [62], and facilitated professional networks [63].

These tools also provide a role in continence promotion as patients and healthcare professionals communicate their experiences of receiving and providing care. An example of a professional network based around another chronic condition is the Netherlands’ ParkinsonNet, an ICT-enabled community-based network of physiotherapists that is able to provide higher quality, lower cost care compared with usual care [63]. Well-developed patient networks may be a valuable source of data on treatment effectiveness and side effects.

Lastly, advances in the sophistication of electronic medical records could potentially enhance case detection and evidence-based management and treatment [64].

Continence education and training for healthcare professionals

Where there is a paucity of continence nurse specialists, it will be necessary to train existing professionals, especially those who currently see people with incontinence, and those who are well placed to deliver continence care. Healthcare professionals are capable of learning a variety of skills, often outside of their usual domain. For example, in the Netherlands, primary care-based nurse practitioners (called Praktijk Ondersteuners, or POHs) have taken on an increasing role in the management of UI in some regions [65]. In the United States, advanced practice providers (nurse practitioners, physician assistants) have acquired additional education and training in providing continence services [66]. In rural Bangladesh, research is currently being undertaken to investigate the role of village “paramedics” or other trained healthcare workers to carry out basic continence care (unpublished data).

Where there are no professionals effectively managing incontinence, we recommend a focus on training and educating primary care physicians, primary care-based nurse practitioners, village ‘paramedics’ or other primary care/community-based healthcare professionals to enhance competency to perform the role [36], [67], [68], [69].

For nurse specialists to play a more prominent role in continence care requires a substantial programme of training of existing nurses, even in systems where continence nurse specialists are plentiful. We recommend the establishment of a certificate in continence care nursing to provide assurance on quality of practice of new and existing continence nurse specialists, and nurses with a special interest [3]. Such a training programme will require a substantial investment on the part of those organisations responsible for professional training and will likely take several years to bring continence nurse numbers to the required level. A significant part of training will necessarily involve “on-the-job” experience, and this will require educational institutions to work effectively with provider organisations.

The most significant barrier to implementing this model may occur in healthcare systems where it is not usual for nurses to take on additional clinical responsibilities. In these systems it may be necessary to focus on educating and training other appropriate staff.

In almost all healthcare systems, there will need to be a short-term focus on the training of existing healthcare professionals including generalist and specialist physicians, specialist physiotherapists, generalist nurses and existing continence care specialists. Existing ‘nursing champions’ should also be empowered to help diffuse best practice within existing generalist nurses [22], [70].

Implications for payers

A recurring theme through our interviews was the low priority of continence care in a time of restricted financial resources. For example, in a recent survey in the UK, many respondents cited the lack of incentives for providers of continence care services to expand treatment [57].

Payment incentives have been important in improving the quality of care in health care, for example through the use of the Quality and Outcomes Framework in the reimbursement of UK primary care physicians and the deployment of performance-related payments in the Geisinger Health System [71]. A lack of financial incentives for primary care physicians may be one of a number of factors behind the under-performance of primary care physicians to provide evidence-based continence care. In more market-based healthcare systems, reimbursement that is most closely aligned with the actual cost of providing care minimises adverse incentives that lead to market failures [72]. The ideal payment system would appear to be one which identifies and rewards ‘value creation’ in healthcare: the achievement of healthcare benefits (outcomes) per unit cost [73]. Payment incentives are, however, not a panacea, and must be changed in co-ordination with health-system financing, regulation, organisation of healthcare and behaviour [74].