An exploratory study of continence care services worldwide

International Journal of Nursing Studies 40 (2003) 235–247

An exploratory study of continence care services worldwide Jill L. Milnea,*, Katherine N. Mooreb,c a

Faculty of Nursing, University of Calgary, Calgary, Alberta, Canada Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada c Faculty of Medicine, University of Alberta, Edmonton, Alberta, Canada b

Received 11 July 2002; received in revised form 12 August 2002; accepted 22 August 2002

Abstract Urinary incontinence (UI) is a complex symptom of underlying disorders that affects over one and a half million Canadians. Although there is good evidence that incontinence can be treated effectively, the most efficient and costeffective method for delivery of treatment is uncertain. The purpose of this study was to explore and describe the continence services that exist internationally and in Canada in order to provide the background for a Canadian model of continence service. Data were collected by communication with international health care professionals with expertise in UI, and distribution of a questionnaire to international and Canadian continence care providers. Findings suggest that although physicians, nurses, and/or physiotherapists currently provide continence care, services are scattered and inconsistent and discrepancies exist in how they are funded. The major themes that emerged are the need for enhanced accessibility of continence care and the importance of multidisciplinary teamwork. r 2003 Published by Elsevier Science Ltd. Keywords: Urinary incontinence; Continence; Continence services

1. Introduction Urinary incontinence (UI) is a prevalent yet underreported health problem that has remained in the shadow of other conditions commonly perceived as more prominent or urgent (Tsechkovski, 1998). There is good evidence that the UI can be treated or managed effectively. What is uncertain is the most efficient and cost-effective method for the implementation of these treatments. To this end, in 1998 the Canadian Continence Foundation, with financial support from the Population Health Fund, Health Canada, initiated a national project entitled Promoting a Collaborative Consumer-Focused Approach to Continence Care in Canada. As one of the first phases of the project, this study (Milne and Moore, 2000) was designed to scan *Corresponding author. Tel.: +1-780-403-255-6898; fax: +1-780-403-255-5899. E-mail address: [email protected] (J.L. Milne).

continence services internationally and nationally, to learn from the work that has already been done and provide background for the development of a Canadian model of continence care. To this end, research questions explored the following broad characteristics: service location, care available to clients (i.e. assessment and treatment modalities, community outreach), health care professionals involved, funding arrangements, referral requirements, perceived strengths and limitations of the service, and professional recommendations for optimal continence care. Descriptive findings have been summarized to enhance understanding of the similarities and differences in continence care services and to inform the themes that emerged from the data.

2. Review of the literature The literature was initially scanned to provide a wideangle view of continence care provision, to understand what services exist, how they have been modeled, what

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gaps in and/or barriers to care exist, and what experts have learned to date. As such, the literature review was conceptualized as the first phase of data collection and has been organized to reflect the categories of service that emerged: nurse-led continence service, physiotherapy-led continence service, multidisciplinary continence service, and characteristics of comprehensive continence care service. Search terms included: urinary incontinence/continence and/or models, services, community care, continence nurse, domiciliary, long-term care, residential, and care delivery. Databases searched were: Best Evidence, 1991–2002; CINAHL, 1990–2002; EMBASE, 1900–2002; Healthstar, 1991–2002; and MEDLINE, 1990–2000. The year 1990 was chosen as the cutoff for article retrieval because continence services, as currently conceptualized, are recent phenomena. Eight thousand titles were reviewed in the initial scan; however, fewer than 150 of these articles were written in English and provided sufficient detail and/or research-based evidence related to the design, development, implementation, and/or evaluation of services to inform the study. 2.1. Nurse-led continence service International continence care has developed at varying rates and within diverse care models reflective of national health care systems. Nurses appear to have played a key role in these developments, particularly in the United Kingdom (UK) where they specialized in continence care in the 1970s, although their focus at the time was provision/monitoring of pads (Roe, 1993). When Rhodes and Parker (1994) surveyed continence nurses in England and Wales (n ¼ 375), 90% were involved in clinical practice, 73% carried a personal caseload, and 16% carried a caseload of over 100 clients. A recent report suggests that the UK nurses continue to provide care within two notably different foci. The ‘‘Lone Continence Advisor’’ visits clients in the community or residential homes, focusing on usage of containment products for budgetary reasons, while ‘‘Nurse-Led Services’’ focus on district-based continence promotion (Fader, 1999). In contrast, the health care system in the United States (US) has not facilitated the evolution of publicly funded or district-based continence services (Jacobs et al., 1998). US continence nurses have diverse educational backgrounds and work within varied care models. When Jacobs et al. surveyed nurses attending a national UI conference, 47% of respondents (n ¼ 249) worked as consultants in ambulatory care settings, 34% worked in acute care hospitals, 21% worked in homecare settings, and 16% provided consultation services to nursing homes. Care provided also varied: for example 86% of respondents reported their practice included

patient education and 70% stated they taught bladder retraining, while only 47% taught pelvic floor muscle exercises. It is difficult to interpret these findings: data were descriptively analyzed and the relationship between factors such as educational preparation, setting, and treatments offered is unclear. Canadian continence nurse services emerged in the 1990s, facilitated by the development of a formal educational program (Skelly and Kenny, 1998). Continence nurse advisors are trained to provide community-based continence care associated with visiting nursing agencies. Results of a recent randomized controlled trial that investigated the short-term outcome of a Canadian nurse-led service (Borrie et al., 2002) are promising. Participants in the treatment group, who attended counseling sessions for behavioral and lifestyle modification every 4 weeks for 6 months, improved significantly in the number of incontinent events and pads worn per 24 h compared with those in the control group (p ¼ 0:001 and 0.021, respectively). Despite such findings, concerns among other health care professionals about the cost and effectiveness of nurse-led continence services have limited their usage. Similar financial barriers to effective service provision have been reported in the UK and US. When Rhodes and Parker (1994) interviewed a subset of continence nurses (n ¼ 23), respondents stated that lack of support from medical and nursing staff and on-going lack of financial resources and facilities have negatively impacted their ability to provide comprehensive care. Although the study was limited to nursing care, gaps included service provision for children, individuals with disabilities, and homebound older adults. US nurses identified barriers to effective service provision as lack of recognition for the role of continence nurse, lack of reimbursement for nursing services, and insufficient resources to establish continence practice (Jacobs et al., 1998). 2.2. Characteristics of nurse-led services Continence nurse services are generally located in community centers and acute care centers, although some also provide domiciliary, or home-based care for clients unable to attend the clinic. Domiciliary care has been recognized as an important aspect of comprehensive continence service. Norton et al. (1999) suggested that many frail, disabled, or elderly people are incontinent for reasons outside the urinary system and emphasized the importance of conducting an initial assessment in the home environment. Assessment and treatment modalities generally consist of history-taking, physical examination, pad test, urinalysis, post-void residual, assessment of fluid intake and bowel function, and bladder diary, followed by behavioral therapies such as pelvic floor muscle

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rehabilitation, bladder retraining, and/or dietary modification (Bear et at., 1997; Carter et al., 1992; Dawes et al., 1991; Dougherty et al., 1998; Lloyd, 1994; O’Brien, 1996; Skelly and Kenny, 1998). Finally, a predominant characteristic of continence nurse services in the United Kingdom, Australia, Canada, and the United States is the ability of clients to self-refer. 2.3. Physiotherapy-led continence service Physiotherapists have also been key to the delivery of continence care. However, despite the evidence that interventions such as pelvic floor muscle rehabilitation are effective treatment strategies (Hay-Smith et al., 2001) little has been written about the characteristics of these services. Overlap exists between the care physiotherapists and nurses provide for incontinent patients. Frahm (1998) surveyed 20 physical therapists and 10 nurses and reported both groups conduct detailed medical, surgical, obstetrical, and urological histories, use bladder diaries, assess the pelvic floor muscle, and educate patients about pelvic floor muscle exercises. Physiotherapists, however, commonly assess general musculo-skeletal status and teach postural and strengthening exercises, while nurses perform speculum examinations of the pelvis in women, and rectal, prostate, and testicular examinations in men. The overlapping role of nurses and physiotherapists in continence care was the topic of a workshop in the UK (Wells et al., 1998). Major objectives were to clarify the disciplinary roles, identify mutual education needs, and plan a way forward for service provision. The debate focused on the generic versus specialist continence advisor, and there was overall agreement that the generic concept devalues each profession’s unique expertise. The consensus group recognized the importance of defining core competencies and safe practices for each profession and in a bi-partite statement emphasized the unique opportunity for collaboration between nurses and physiotherapists. 2.4. Multidisciplinary continence service Multidisciplinary services are predominantly clinicbased and nurse or physician-led, although the latter are again poorly represented in the literature. Fundamental differences in multidisciplinary services reflect how they are funded, the health professionals involved, and whether or not domiciliary outreach care is provided. For example, a continence service located within a community in Glasgow (Shields et al., 1998) is publicly funded and provides clinic-based care as well as outreach to nursing and residential homes. The team consists of continence nurse advisors, a part-time physiotherapist, and an evaluation officer. Assessment and treatment options are primarily behavioral. A clinic

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based nurse-led service in the United States (Newman et al., 1996) also provides outreach care, but is not publicly funded. According to the authors, collaboration between nursing and medical personnel enhances care by reducing the time clients must wait for prescriptions and medical referrals. A regional approach to multidisciplinary continence care has been developed in Israel (Norton et al., 1999). The National Center for Continence was established in 1994, with a coordinating body of health care professionals whose primary role is the training and education of primary health care providers. A central clinic with advanced diagnostic tools facilities a variety of treatment options, including surgery. Regional Leading Teams, consisting of a physician and a nurse, are selected and clinics established to provide regional continence care. At least three family physicians are involved with each clinic and serve a population comprised of over 20% older adults. Finally, Keane et al. (1993) described a publicly funded, multidisciplinary service in Bristol, England, consisting of a physician, continence nurse, physiotherapist, and team of community-based nurses. Location of the service within acute care facilitates multidisciplinary teamwork as well as simple to complex assessment/ treatment modalities. Clients are able to self-refer to weekly continence, enuretic, and physiotherapy clinics. The continence service is also a secondary and tertiary referral site for the entire southwest region of England; over 20,000 Bristol clients were referred between 1972 and 1990. The Bristol continence service (Keane et al., 1993) was the focus of a study that evaluated the impact of a continence service rather than specific treatment(s) (Roe et al., 1996). Commissioned by the Department of Health in the UK, researchers recruited 376 individuals with current or past histories of urinary incontinence to represent a health authority with (HA1) and without (HA2) a continence service. Among numerous findings, participants in HA1 were more likely to have received appropriate referrals (po0:01), health interventions (po0:01), and health information (po0:01) related to their UI. According to the researchers, results reflect ‘‘greater clinical activity and more thorough assessmenty by doctors in the health authority with a continence service’’ (p.115). What is uncertain is the overall impact of the service. For example, only 19% of participants in HA1 had contacted a continence nurse while the majority had sought help from their family physicians. It is possible that the service impacts care indirectly through enhanced awareness and education of primary health care professionals. Research is required to build upon these findings and to further explore and compare the effect of continence care by primary health care professionals and continence specialists.

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2.5. Elements of comprehensive continence services Clearly, diverse models of continence service exist. It is difficult to compare the characteristics or effectiveness of these services because of a lack of detailed descriptors and a paucity of objective clinical outcome measures. Expert opinion and consensus meetings, however, have identified key characteristics of any comprehensive continence care service (Baskin and Jeter, 1997; Clayton et al., 1996; Department of Health, 2000; National Continence Management Strategy, 2001; Royal College of Physicians, 1995). A UK multidisciplinary committee convened by the Royal College of Physicians (1995) reported that ideal continence services would be consultant (physician)-led and able to cross professional and institutional boundaries, with tertiary referral centers for more specialized care. According to the committee, optimal continence services should have facilities for full assessment (including urodynamics), access for investigation of fecal incontinence, a full range of appliances and aides, and programs for professional and public education. In a report prepared for The Social Policy and Research Unit in the UK, Clayton et al. (1996) recommended that nurse-led multidisciplinary teams function within a care management model, in which ‘‘managers’’ assess clients and select the appropriate pathway for treatment. Advantages of this model include entry to the system at various points, easier progress through the system, and the on-going availability of a key contact. In a report prepared for The National Association for Continence in The United States, Baskin and Jeter (1997) provided guidelines for two ‘‘ideal’’ models of US continence care: The Nurse Managed Clinic and The Pelvic Health Center. The Nurse Managed Clinic is described as a freestanding or a hospital-based center, with nurses providing outreach services as necessary and collaborating with physicians and other local health professionals. In contrast, the multidisciplinary Pelvic Health Center is located within a full service hospital and offers an inclusive range of assessment and treatment options. A recent report issued by the UK Department of Health (2000) has built upon many of the preceding recommendations to promote a ‘‘model of good practice to help achieve more responsive, equitable, and effective continence services’’ (p. 3). The result of expert opinion and research-based evidence, the report stresses the need for cohesive, comprehensive, collaborative, and integrated care that reduces geographic variation. Comprehensive care would enable a full range of educational, assessment, and treatment options with additional focus on prevention, while an integrated approach would facilitate coordinated movement between primary, secondary, and tertiary care levels. The authors recognized three possible approaches to primary care as:

(1) providing specific care coordinators with basic training, (2) training many or all primary health care professionals, or (3) referring all clients with UI to specialist continence services. They did not, however, suggest factors that would support one approach over the others and further research is required in this area. The UK report provides broad guidance and establishes ideals for the implementation of good practice in relation to continence services, but does not address specific factors that would help translate these ideals into practice, such as funding arrangements and multidisciplinary roles within the models. In comparison, a national strategy to develop continence care models in Australia has involved specific investigation of three distinct approaches to coordinated primary health care (Newcastle Institute of Public Health, 2001). The Integrated Management Model focuses on education, dissemination of information, and development of best practice guidelines. The Coordinated Primary Health Care Model is a general practitioner-focused approach with on-going education for physicians as well as pharmacists, nurses, and other primary caregivers. The third approach, a multidisciplinary project, involves the coordination and integration of existing expertise to establish networks of continence care. Each model has been established in different regions to inform future service development; however, the report does not identify the respective outcome measures. According to recent communication, the project concluded in September 2001 and results will be available in October 2002. In summary, although continence services are influenced by national and regional characteristics, policies, and priorities, there are trends towards multidisciplinary continence care. It is important to note that this literature review has been limited by a lack of descriptive publications and is not necessarily representative of the services available worldwide. As noted, physician and physiotherapist-led services are particularly under-represented in the literature despite these very active groups providing continence care. There is a bias towards English-speaking countries. In effect, the literature review emphasizes that we still have much to learn about the design, implementation, and evaluation of effective and efficient continence care. The purpose of this study was, therefore, to further explore continence services internationally and to learn from the experts who are currently providing continence care in order to inform the development of Canadian models.

3. Methods Informed by the literature review, the second phase of this study involved communication with, and

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distribution of semi-structured questionnaires to health care professionals currently specializing in UI. Progress was not linear, rather contacts were initiated whenever possible throughout the data collection phase. Qualitative content analysis enhanced understanding of similarities as well as differences in continence services and recognition of the emergent themes. 3.1. Sample The purposive sample consisted of 138 health care professionals (20 internationally and 118 nationally) involved in the provision of continence care. International experts were identified through the literature review, professional contacts, and communication with the following foundations: The Continence Foundation of Australia; The Continence Foundation, UK; The Pelvic Floor Foundation, The Netherlands; Incontact, England; The Association of Continence Advisors, England; The British Association of Continence Carers, England; The Simon Foundation for Continence, USA; The National Association for Continence, USA; The New Zealand Continence Association; and the Singapore Continence Foundation. Canadian health care professionals surveyed were selected from The Canadian Continence Foundation’s (CCF) list of service providers to represent the current range of disciplines involved and urban as well as rural care settings.

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Participants were contacted by telephone and/or e-mail to clarify responses as necessary. Two questionnaires were completed by telephone interview. 3.3. Data analysis Data were primarily qualitative in nature, due to the open-ended nature of the questions, and were analyzed using descriptive content analysis. Frequencies were tabulated whenever possible, to explore the commonality of certain responses and to reflect the level of support for specific recommendations. Participants’ written and oral responses to the survey questions were read and an initial level of coding applied according to the particular characteristic of service, as presented in the preceding section, they described. Coded data were then organized in tables (as illustrated in Table 3) to facilitate comparison across services. Tables were subsequently grouped according to service provider, consistent with the categories that emerged from the literature review, and by country. A constant comparative technique (Flick, 1998) was used to assess similarities and differences between services, first within and between countries and then service provider categories. This facilitated the identification of relevant themes that emerged from the data rather than being superimposed onto it (Sandelowski, 2000).

3.2. Data collection 4. Results Data were collected informally, through personal correspondence with continence experts worldwide, and formally through the distribution of a semi-structured questionnaire (Appendix A). The questionnaire was designed to explore the following characteristics of continence services using open-ended questions: physical location; disciplinary roles; funding arrangements; use of clinical care guidelines; assessment/treatment/management strategies; outcome data; perceived strengths and limitations; and professional recommendations. Three Canadian health care professionals, with expertise in instrument development and urinary incontinence, examined the questionnaire for face and content validity. Questionnaires were distributed in a single wave due to time constraints associated with the project.

The results of this study support the categories identified by the literature review, and suggest that continence services have been predominantly nurse-led, physiotherapy-led or multidisciplinary (Fig. 1). Although physicians have been very active in the provision of continence care, those who responded to the survey were part of multidisciplinary teams and their services are therefore described within that section. Study findings have been summarized to reflect the similarities and differences in continence services worldwide that contributed to the identification of themes. International results are followed by Canadian survey findings. Complete results, including the numerous tables created, can be viewed on the world-wide web (Milne and Moore, 2000) (Fig. 1).

Classification of Continence Services

Nurse-Led

Multidisciplinary Nurse-led

Physician-led

Fig. 1. Classification of continence services.

Physiotherapy-Led

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4.1. International results Correspondence was initiated by mail, telephone, email, and/or fax with 26 English-speaking health care professionals working outside Canada. Eighteen responded with information regarding specific continence services and/or names of other health care professionals to contact. The questionnaire was then distributed to 24 international health care professionals in the US (n ¼ 8), the UK (n ¼ 3), Israel (n ¼ 1), Australia (n ¼ 1), The Netherlands (n ¼ 10) and Japan (n ¼ 1). Seven of these questionnaires (29.17%) were returned. 4.2. Nurse- and physiotherapy-led services There were no respondents from international nurseled continence services. The sole Australian respondent, a physiotherapist, reported that clients attending her community-based clinic can self-refer but must pay privately for their care. Treatment modalities include bladder training and pelvic floor muscle rehabilitation as well as posture and balance. Perceived limitations include the time intensive nature of assessment and treatment, the cost to clients, and the lack of a multidisciplinary team. 4.3. Multidisciplinary services Four respondents from the US worked within multidisciplinary continence services. Two were described as physician-led continence clinics located in acute care hospitals. Team members include medical specialists, nurses, physical therapists, and a behavioral therapist and treatment options range from behavioral therapy to complex surgical intervention. Two others are nurse-led clinics. One team consists of nurse practitioners, occupational therapists, and physiotherapists with clinic-based and outreach service to community-dwelling and institutionalized clients. Another team consists of a nurse practitioner working in consultation with medical specialists in an urban geriatric clinic. All US respondents reported that clients are able to self-refer to their services but pay privately for the care they receive. A respondent from The Netherlands reported that a multidisciplinary team of medical specialists (colorectal surgeons, gastroenterologists, gynecologists, urologists, sexologists, radiologists), physiotherapists, and continence nurses provides clinic-based care for patients with pelvic floor dysfunction. Regular team discussions are held to avoid unnecessary consultations and ensure an appropriate care pathway. Finally, the only respondent to describe a regional multidisciplinary care model was from the Somerset Health Authority in the UK. The publicly funded service operates within a three-tiered model. Clients self-refer to non-specialist health professionals, such as district nurses and health visitors, at the primary care level.

Those requiring specialized assessment and/or treatment are then referred to continence nurse advisors or physical therapists at the secondary care level. Medical specialists provide complex assessment and surgical intervention at a tertiary level, as necessary. 4.4. Canadian results One hundred and eighteen questionnaires were distributed to health care professionals practicing in all 10 Canadian provinces. The combination of nurses, physiotherapists, and physicians surveyed approximated their representation, by discipline, on the CCF’s list of continence care providers (Table 1). Thirty-four of these questionnaires were returned, with representation from every province but Newfoundland (29% response rate) (Table 2). 4.5. Nurse-led services Six questionnaires were returned from nurse-led continence services. Although aspects of the services differed, assessment and treatment modalities were similar. Respondents identified assessment measures as bladder diaries, focused physical examinations and histories, urinalysis (and cultures as necessary), and post-void residuals. Clients are referred for more extensive urodynamic testing as necessary, where facilities exist. Behavioral treatments include bladder retraining, pelvic floor muscle rehabilitation, dietary modification, and intermittent catheterization. All six respondents reported that clients are able to self-refer for publicly funded nursing care. The nurse-led services differ in their provision of outreach care. Three are located in outpatient departments of urban facilities in Ontario but do not provide outreach service. In contrast, respondents from the Northern Alberta Continence Service reported that, in addition to clinic-based care, nurses provide community outreach service to clients’ homes and acute/long-term care facilities within the region, as well as telephone consultation for clients outside regional boundaries. Respondents from The Victoria Order of Nurses in

Table 1 Disciplinary representation on Canadian survey Discipline

Nursing Physiotherapist Physician Other

Representation on CCF list

Representation on survey list

N

%

N

%

173 56 169 12

42.19 13.66 41.22 2.93

47 25 46 0

39.83 21.18 38.99 0.00

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Table 2 Provincial and disciplinary distribution of Canadian questionnaires Nurse

Newfoundland P.E.I Nova Scotia New Brunswick Quebec Ontario Manitoba Saskatchewan Alberta British Columbia Total

Sent

Returned

0 1 3 2 2 25 1 1 8 4 47

0 0 0 1 0 7 1 1 3 1 14

Physiotherapist

Physician

Sent

Sent

Returned

#Sent

#Returned

Returned

0 0 1 1 7 2

0 0 0 0 2 1

1 1 6 1 11 12

0 1 1 0 2 4

1 2 10 4 20 39

0 1 1 1 4 12

1 7 5 25

0 4 3 10

0 4 5 46

0 2 0 10

2 19 14 118

1 9 4 34

Ontario also reported that they operate continence clinics with outreach service, but only those clients referred by Home Care are publicly funded. Respondents’ perceptions of service limitations were similar. They reported that the time required for referrals to physicians, the lack of outreach care for homebound clients, and the ‘‘piecemeal’’ approach to service provision, are limiting factors. Three of the five nurses also emphasized the need for multidisciplinary continence care. 4.6. Physiotherapy-delivered continence services Ten of the 25 questionnaires mailed to physiotherapists were returned, with representation from Quebec, Ontario, Alberta, and British Columbia. Results are presented in Table 3. To summarize, respondents reported that they provide continence care in generalized clinics as well as clinics that specialize in the treatment of pelvic floor dysfunction. Funding arrangements vary according to the physical location of the service and, in Alberta, according to the Regional Health Authority. Clients in the Capital Health Region (Edmonton) are eligible for publicly funded physiotherapy continence services; those in other health authorities generally pay privately for the same service. Moreover, physiotherapy services in major institutions (n ¼ 5) are publicly funded, while those in private community-based clinics (n ¼ 5) are not. The most commonly reported limitation was the lack of public funding, which according to respondents reduces the accessibility of continence care. Two also emphasized that continence clinics should be multidisciplinary (Table 3). 4.7. Multidisciplinary continence services Physicians, nurses, and physiotherapists were the predominant members of multidisciplinary continence

care teams responding to the survey. Physician-led services are based in acute care settings, thereby facilitating a range of simple to complex assessment and treatment options. Five specialists (urologists/ urogynecologists) reported they work with nurses and/ or physiotherapists. Physicians maintain primary responsibility for the assessment and treatment of patients, while nurses and physiotherapists educate patients about bladder health. Another respondent described a multidisciplinary team in which a physician, registered nurse, and physiotherapist work collaboratively in a publicly funded, hospital-based clinic in Edmonton. Treatment options again range from behavioral therapies to surgical interventions; however, outreach care is not provided. One multidisciplinary team in Ontario, consisting of physicians and nurses (with referral pathways to physiotherapists and other medical specialists as needed), has been providing clinicbased care but recently expanded to offer outreach to long-term care facilities, hospitals, and clients’ homes. According to respondents additional funding is required to provide adequate service to rural areas. Finally, a multidisciplinary team of a nurse, physiotherapist, and behavioral therapist provides clinicbased and outreach service in British Columbia. Clients are able to self-refer but pay privately for care they receive. Repeated attempts by the health professionals to obtain public funding for home care referrals have been unsuccessful. Respondents from these multidisciplinary services reported similar limitations and made common recommendations. The accessibility of continence care was generally perceived to be inadequate. Clients of one practice are waiting approximately 8 months for consultation with a specialist and the respondent, a physician, recommended that nurses be responsible for initial assessments. Several respondents described the lack of outreach/domiciliary service as a limitation, and

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Table 3 Canadian physical therapy continence services Service: Continence care in generalized physical therapy department/clinic (n ¼ 7) Continence care in clinic specializing in pelvic floor dysfunction (n ¼ 3); with outreach service (n ¼ 1); with satellite service to smaller community (n ¼ 1) Clients: Individuals with pelvic floor dysfunction (n ¼ 8) Women only (n ¼ 2) Setting: Urban (n ¼ 10) Location: Out-patient physiotherapy departments within health centers (n ¼ 4) Community-based physical therapy clinics (n ¼ 6) Referral pathway: Physician referral required (n ¼ 2) Self-referral accepted (n ¼ 8) Service providers: Physical therapists only (n ¼ 10) Funding: Services within health centers in Ontario (n ¼ 1), Alberta (n ¼ 2), and B.C. (n ¼ 2) publicly funded Service in private clinic in B.C. partially funded by medical services plan (12 treatments per year, 15 for seniors) Service in private clinics in Alberta (n ¼ 2), and Quebec (n ¼ 2) fee for service Assessment modalities: History-taking, bladder diary, pelvic examinations, focused physical assessments Treatment modalities: Pelvic floor muscle exercises, bladder retraining, biofeedback, electrical stimulation, dietary modification, pain reduction Outcome measures: Subjective—Clients’ reports of changes in bladder function and satisfaction with service Objective—Biofeedback readings pre and post treatment Outcome findings: None provided Limitations cited: Lack of funding (n ¼ 5) Recommendations made: Funding to enhance accessibility (n ¼ 6); easier access for testing (n ¼ 1); multidisciplinary care (n ¼ 2)

Table 4 Summary of major findings Funding arrangements vary by country, service provider, and service location. Lack of publicly funded continence care reduces accessibility of service. Multidisciplinary care, most commonly involving physicians, nurses, and physiotherapists, enables a full range of continence care options. A logical pathway is required to reduce wait times for medical specialists and to eliminate the current ‘‘piecemeal approach’’ to care. Self-referral at the primary level is an important aspect of accessible continence care. Lack of outreach service is a limitation to comprehensive continence care. Regionalized continence care enables comprehensive care at the primary, secondary, and/or tertiary level.

emphasized the need for appropriate funding. Finally, services that lacked a physiotherapist reported this as a limitation. The importance of multidisciplinary care was repeatedly emphasized. In summary, although multiple characteristics of continence care services have been presented, there are notable consistencies in strengths and limitations cited, as well as recommendations made by health professionals. These major findings are outlined below and,

combined with results of the literature review, have contributed to the generalized themes presented in the discussion (Table 4).

5. Discussion The purpose of this study was to explore the continence services that exist nationally and internationally in

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order to provide background for the development of a Canadian model of continence care. In addition to published information, data were derived from communication with health care professionals with expertise in urinary incontinence and distribution of a questionnaire both internationally and within Canada. The study has several limitations. First, although the continence services described are felt to be representative of worldwide trends, they are not conclusive. The international data reflect English-speaking countries only, and the number of services surveyed was limited by time constraints associated with the project. Second, the response rate to the survey was low (29% internationally and 29% nationally), and may reflect the fact that the questionnaire was not pilot-tested. It is possible that the wording of the questionnaire was not equally appropriate for all health care professionals. One physician, for example, returned a blank questionnaire stating that it was not relevant to medical care. Third, the questionnaire consisted of open-ended questions and as a result the amount and type of detail that respondents provided varied considerably. Respondents rarely reported on the specific clients using their services and it was therefore difficult to identify gaps in service provision. Data regarding clinical guidelines, outcome measures, and service evaluation were also commonly omitted. Finally, it is well known that general practitioners are often the first point of entry for health care and are the health professionals UI clients consult most often (Klag, 1999; Roe et al., 1996). General practitioners, however, were poorly represented by the survey. Only eight family practitioners were listed on the CCF’s list of health professionals with a stated interest in continence care. Questionnaires were mailed to four of these but none were returned. 5.1. Major themes: accessibility and multidisciplinary care A review of the literature and study findings suggests that although diverse models of continence care exist internationally and nationally, continence services are scattered and inconsistent. Two major themes, the need for accessible continence care and the importance of multidisciplinary, regionalized service, emerged. 5.2. Accessibility The Canada Health Act of 1984 reaffirmed accessibility as one of the five principles of an equitable health system (Madore, 1996). Results of this study suggest that there are four important variables associated with accessible continence care: (1) the ability of clients to self-refer to enter the system, (2) a logical care pathway once in, (3) outreach service for those who

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require it, and (4) public funding to reduce financial barriers. 5.2.1. Self-referral at the primary care level Continence services are currently offered in a variety of settings, from community health centers to large acute care institutions. The ability of clients to self-refer for care at the primary level helps ensure that all those in need of help can be assessed and that clients who are assessed at the secondary or tertiary care levels are those with more complex symptoms. The majority of international services surveyed reported that clients are able to self-refer for care at the primary level, including all clinic-based continence nurse clinics, five of six multidisciplinary services, and the two regional services. Sixteen of 20 Canadian services that returned the questionnaires (80%) also reported that their clients are able to self-refer. Two physiotherapy services, as well as the hospital-based physician-led services, however, require physician referrals. 5.2.2. A logical care pathway The appropriate and comprehensive treatment of incontinence may require consultation with several health care professionals. A logical care pathway, with a care manager that coordinates the flow, can avoid time-consuming and costly duplication of service (Clayton et al., 1996). An important part of this pathway is the design and implementation of three levels of care. According to the Somerset, UK, model care at the primary level is provided by health care professionals with a generalist focus, such as home care nurses, family physicians, and physiotherapists, who perform simple assessments and interventions for urinary incontinence. Health professionals who have specialized in continence care, such as continence nurse advisors, provide care at the secondary level for clients with more complex problems. Finally, medical specialists provide tertiary level care, including complex assessment and treatment of clients with unresolved incontinence. Clients must be referred for specialized care to avoid duplication of service and promote the efficient use of resources. Close collaboration between all health care providers is critical. 5.2.3. Domiciliary outreach Domiciliary outreach improves access to continence care for individuals who are unable to seek professional help outside of their homes. It is also an important consideration for the provision of service to regions that do not have the population or professional resources to support clinic-based service. There is evidence to suggest that home-based assessment and treatment modalities for urinary incontinence are effective (Bear et al., 1997; McGhee et al., 1997).

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Results of this study, however, suggest that domiciliary outreach has been primarily associated with communitybased continence nurse services. Respondents from four nurse-led multidisciplinary services and four continence nurse services in Canada provide outreach services, while respondents from 10 physiotherapy services, three hospital-based continence nurses service, and five physician-led services do not. Telephone help-lines may also increase the accessibility of continence care. Dawes et al. (1991) reported that 1764 calls were received during the first 31 months of their continence advisory service. One Canadian service, The Northern Alberta Continence Service, reported they offer outreach to individuals in other health care regions through a telephone help-line. 5.2.4. Public funding Regardless of the services offered, continence care that is not publicly funded is not equally accessible to all clients. Study findings demonstrate that funding discrepancies exist worldwide. For example, clinics in England (Carter et al., 1992; O’Brien, 1996) and Scotland (Dawes et al., 1991) are publicly funded while at least one Australian clinic is not (Lloyd, 1994). Study respondents echoed these findings: respondents from Australia and the United States reported that clients are required to pay for continence care, while respondents from the UK reported that continence care is publicly funded. Funding discrepancies exist within Canada as well. Twelve of the respondents reported their services are funded by provincial health care. This includes services in Ontario (n ¼ 6), Alberta (n ¼ 4), and British Columbia (n ¼ 2). Eight continence services are not provincially funded; clients and/or private insurance companies are responsible for payment. Five physiotherapists from British Columbia, Alberta, and Quebec reported their services are not funded, as did a nurse working with a physiotherapist in British Columbia. VON continence services that returned questionnaires (n ¼ 2) reported that clients referred by home care are funded, but all other clients are charged for the service. Funding also varies regionally. In the Capital Health Region of Edmonton, Alberta, patients are funded for 12 visits to a physiotherapist per year (these visits can include treatment for urinary incontinence), while in Calgary Regional Health Authority clients pay approximately $80.00 per visit. Thirteen of the 20 Canadian respondents emphasized the need for enhanced public funding of continence services.

England required referral outside the service for symptoms and conditions such as hematuria, urinary tract infections, and prostatic hypertrophy. Lloyd (1994) reported that referrals to physicians for issues such as medication changes were time consuming and a limitation of the service. Similarly, Shields et al (1998) described a multidisciplinary continence service with a continence nurses and a physiotherapist, but reported the time required to refer clients to physicians was problematic. Canadian respondents supported the need for multidisciplinary continence care. Three of four respondents from clinic-based continence nurse services, and two physiotherapists, recommended multidisciplinary care. Three respondents, two from the VON and one from a geriatric continence clinic, reported that the inclusion of a physiotherapist would be beneficial, while a respondent from a continence service involving a nurse, physiotherapist, and behavioral therapist reported that closer links with physicians would be helpful. Study results suggest that the health care professionals most commonly involved in continence care are physicians (including urologists, urogynecologists, geriatricians, and general practitioners), continence nurses, and physiotherapists. Behavioral therapists can play a significant role, but were only listed as a service provider by two respondents. According to the National Association for Continence Report (Baskin and Jeter, 1997), dieticians and pharmacists also play a supportive role. Strategic location of a continence service can facilitate active multidisciplinary involvement and support. Carter et al. (1992) reported that locating a continence nurse clinic within a urology outpatient clinic created a mutually beneficial relationship with other disciplines, including gynecology, urology, and geriatrics, as well as access to urodynamic testing. Respondents from a Geriatric Clinic reported that locating a multidisciplinary continence clinic within an urban hospital facilitated similar access. It may not be feasible, particularly in rural areas, for multidisciplinary teams to work together within one continence service. In such cases, open and organized lines of communication are essential to facilitate multidisciplinary collaboration (Carter et al., 1992; O’Brien, 1996). Regionally organized continence services, with primary care available in urban and rural areas, and secondary and tertiary levels of care accessible in small cities and urban areas (Norton et al., 1999), facilitate the delivery of cost-effective and appropriate continence care for all.

5.3. Multidisciplinary teamwork The multidisciplinary team is an integral part of a continence service due to the complexity of client needs. O’Brien (1996) reported that 14% of female clients and 74% of male clients of a nurse-led continence clinic in

6. Implications of the study Urinary incontinence is a multifaceted and complex symptom, and individuals who experience the condition

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have diverse needs. Design of a Canadian model of continence care will be equally complex, given the regional differences in population-based needs and health policies. This study was, as reported earlier, the first phase of a national project to develop realistic models for continence care delivery. Findings have been reviewed by committees of multidisciplinary continence experts and lay people across Canada, and have contributed to the design of three integrated care models for three population bases: urban, small city, and rural. Designated panels across Canada have in turn reviewed the models, and empirical trials are pending. The results of this study have important implications for Canadian and international continence care. The integration of three levels of continence care will require extensive collaboration and on-going multidisciplinary teamwork. Widespread educational programs will be required to ensure that primary health care professionals, such as home care nurses and general practitioners, possess the appropriate knowledge and skills to initiate assessment and treatment for urinary incontinence. It is likely that additional health professionals with expertise in urinary incontinence will be required to ensure comprehensive, accessible care at the secondary level; the educational requirements and professional roles of these specialists may need to be more clearly defined. Finally, regionalization of continence services, to ensure that areas lacking multidisciplinary resources have access to appropriate care, will require extensive collaboration between health care professionals, health care administrators, politicians, and consumers. This research study has afforded the opportunity to explore similarities and differences among the numerous models of continence care that have been developed, to learn from health professionals with expertise in the area, and to begin to explore ways to adapt what has been learned to meet the unique needs of the Canadian health care system. Above all, it has emphasized the importance of developing a flexible model that removes current barriers and facilitates comprehensive as well as accessible, publicly funded continence care. Findings have relevance for the one and a half million Canadians with UI (Angus Reid, 1997); however, the themes that emerged are relevant to just and equitable care provision regardless of diagnosis and national borders.

Acknowledgements This study was funded in part by a grant from Population Health, Health Canada, Division of Seniors and Ageing. The authors would also like to acknowledge the assistance of individuals without whom the study

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could not have been completed in a detailed and timely manner. Jane Clayton, Mandy Fader, Veronica Haggar, Christine Norton, Brenda Roe, and Yvonne Rees of the United Kingdom contributed invaluable expertise and information. Thelma Wells, Joan McDowell, and Cheryl Gartley of the United States were helpful in providing names of health care professionals that could inform the study. Sandra Engberg, Diane Smith, Linda Brubaker, and Mikel Gray provided current information about continence services in The United States. Peter Schmidt and David Fonda also contributed information about current continence services and were helpful in circulating the questionnaire to service providers in Australia. Thanks are also due to the following health care professionals in Canada: Sonja Bray, Carla Brown, Hanneke Dijk, Laurel Emerson, Dorothy Falk, Dr. Flood, Pat Foster, Judy Fox, Mireille Gregoire, Lesley Hanson, Magdy Hassouna, Donna Kane, Pat Lieblich, Sonja Lytwynek, Robert MacMillan, Shirley McSaveney, Debra Miller, Susan Mills-Zorzes, G. Nadon, Valerie Pociluyko, Helen Purnell, Marlene Regehr, R. Reid, Magali Robert, Lynda Rodney, Jennifer Skelly, Alison Smith, Janice Smith, Luc Valiquette, Penny Wilson, Cristina Udal, Jackie Wells, and those who returned anonymous questionnaires. Finally, we thank Derek Griffiths, Malvina Klag and Anita Saltmarche, who provided both valuable information and on-going assistance at all stages of the report.

Appendix A. Urinary incontinence care delivery questionnaire

1. Please describe the model of continence care that you are, or have been involved with (i.e. does it operate as a clinic, does it involve community and/or institutional outreach, is it meeting urban/rural needs). 2. What circumstances contributed to the development of the continence care model that you have described (i.e. was this model of care selected in response to specific local or community needs, or funding availability, etc.)? 3. What are the disciplines and roles of the health care professionals who are involved with the delivery of continence care you are describing? 4. Please describe the service that is offered. For example, how are clients referred, how many visits are averaged, what assessments/treatments/management strategies are offered, and what follow-up care is provided? 5. How has the service been funded? Is there a cost to clients? 6. Did this model of continence care evolve out of specific guidelines for continence care, such as the AHCPR guidelines? If so, please elaborate. If not,

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how were the parameters for the assessment, treatment, and management of incontinence decided upon? 7. Have any subjective or objective evaluations regarding changes in incontinence following interventions and/or patient satisfaction been completed? If so, would you be willing to share the results (please provide the references). 8. What do you believe at the strengths of this type of continence care model? What do you believe are the limitations of this model? 9. In an ideal world, what would you need to provide optimal continence care?

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