Paediatric sleep resources in Canada: The scope of the problem

Abstract

BACKGROUND:

Sleep-disordered breathing (SDB) is prevalent in children and is associated with significant comorbidity.

OBJECTIVES:

To describe paediatric sleep physician and diagnostic testing resources for SDB in Canadian children.

METHODS:

A 38-item, Internet-based survey was sent to the 32 members of the Canadian Pediatric Sleep Network (CPSN). A shorter telephone survey was administered to all 182 non-CPSN sleep laboratories across Canada.

RESULTS:

Responses were obtained from 29 of 31 (91%) CPSN members and 121 of 182 (66%) non-CPSN sleep facilities. Sixty-seven of 121 (55%) of the responding non-CPSN facilities reported that they see children <18 years of age. Thirty-six of 121 (30%) and 23 of 121 (19%), respectively, see children ≤12 years of age or ≤8 years of age. Marked disparities across provinces/territories were observed, with no practitioners or polysomnography in the Yukon, Northwest Territories, Nunavut, Saskatchewan, New Brunswick, Prince Edward Island, and Newfoundland and Labrador. Alberta has the smallest ratio of children to practitioners (approximately 167,000 to 1) and Ontario has the smallest ratio of children to polysomnograms performed per year (approximately 487,000 to 1). Reported wait times for polysomnography ranged from <1 month, to 1.5 to 2 years. In paediatric tertiary care centres, the number of polysomnograms performed per year ranged from 55 to 700 (median 480) and in other laboratories the range was 400 to 4000 (median 1100).

CONCLUSIONS:

The present study demonstrates a significant lack of resources and services for paediatric SDB care across Canada, with pronounced geographical disparities. Even if only affected children were tested with polysomnography, the authors estimate there are 7.5 times more children with SDB than current testing capacity.

Paediatric sleep disorders are highly prevalent. Sleep-disordered breathing (SDB), which includes obstructive sleep apnea, central sleep apnea and nocturnal hypoventilation, occurs in approximately 1% to 5% of children (1). Obstructive sleep apnea (OSA), the most common form of paediatric SDB, has been shown to be associated with a 226% increase in health care utilization (2). Moreover, paediatric SDB, even in otherwise healthy children, is a risk factor for cardiovascular and metabolic dysfunction, in addition to psychological, emotional, behavioural and neurocognitive sequelae (1,3–6).

Despite an increase in awareness by physicians that these disorders exist and knowledge of the negative consequences of SDB, there is a significant time lag from symptom onset to diagnosis of paediatric SDB, by months to years. This is likely because of difficulties in accessing paediatric sleep medicine expertise. Diagnosis is likely limited by current resources to obtain polysomnography (the gold standard diagnostic test), a lack of simple effective screening tools and by access to sleep specialists. Polysomnography is more expensive, labour-intensive and cumbersome in paediatric patients because the staffing ratio of technologists to patients is lower by necessity. Furthermore, the lack of sufficient predictive accuracy of paediatric questionnaires and overnight oximetry to diagnose SDB (7–10) has necessitated alternative techniques for diagnosis, particularly polysomnography. Home testing devices, such as ambulatory polysomnograms, are now gaining popularity in the diagnosis of adults with SDB. They are currently being evaluated in paediatric populations, although they are not yet fully validated for use in children (1,7,8,11).

Furthermore, resources may vary across geographical regions in Canada and wait list lengths may be as highly variable as they are in adult care. This has been previously evaluated in adults with suspected SDB, where it was noted that worldwide, patients face challenges in accessing diagnostic services and treatment (12). In Canada in particular, the demand for polysomnography is 10-fold the capacity (12). It was estimated that in a relatively well-resourced region, only 7% of the potential adult sleep apnea referral population was being serviced (12). To meet this demand, a 60% increase in sleep specialists would be required (12). In the paediatric community in Canada, there are even fewer polysomnography and sleep specialist resources, and we suspect that the disparity between resources and demand is greater in this especially vulnerable population. The present study, therefore, aimed to describe the paediatric sleep resources to assess and manage SDB in terms of human resources of paediatric sleep specialists, polysomnography testing and the types of patients served across Canada.

METHODS

To ascertain the paediatric sleep services for SDB across Canada, a 38-item Internet-based survey (FluidSurveys, Canada) was developed by the authors in conjunction with a methodologist experienced in survey design. The survey included 38 questions about setting, training and affiliations of paediatric sleep practitioners, as well as the wait times, capacity, staffing and types of patients seen in paediatric sleep clinics and polysomnography laboratories. It was then pilot tested by three paediatric respirologists and a general paediatrician to establish face validity. A two-stage strategy was devised in an attempt to identify all Canadian paediatric sleep practitioners seeing children for SDB. The questionnaire was sent to all 32 members of the Canadian Pediatric Sleep Network (CPSN), which consists of all paediatric respirologists practicing sleep medicine in Canada, in addition to interested paediatric neurologists, paediatricians, psychologists, psychiatrists and nurse practitioners who treat children with sleep disorders. Those who did not respond to the initial CPSN survey request for participation were sent up to two e-mail reminders. When there were multiple responses from an institution, the response of the medical director was used. All polysomnography laboratories across Canada were also contacted by telephone to identify additional practitioners and facilities assessing children.

Because some adult sleep laboratories may also see children and youth, telephone calls were made to all sleep laboratories across Canada and a short telephone survey was administered to ascertain whether children were seen at these facilities and, if so, of what age range. These laboratories were identified through the directory of the Canadian Sleep Society and a peer-to-peer request from the Canadian Paediatric Decision Support Network. In addition, Internet searches were conducted, and lists of sleep laboratories were obtained from the Ministry of Health of each province and the Independent Health Facilities Program in Ontario.

Participants were informed that a completed survey implied consent to participate in the study. Ethics approval for the present study was received from the Children’s Hospital of Eastern Ontario Research Ethics Board (Ottawa, Ontario). The results from each survey were confidential but not anonymous. The CPSN survey was conducted from April to June 2012, with telephone interviews conducted from June 2012 to June 2013.

Descriptive statistics (frequencies and percentages) were used to summarize the respondents’ demographic characteristics including their location of practice and sleep training. Details of their institutions’ sleep clinic and/or sleep laboratory were also summarized using both proportions for categorical items, and means and SDs for numerical open-ended items.

Data reflecting resources were also described according to the population of children in each province/territory. Information on the Canadian population of children was obtained from Statistics Canada (www.statcan.gc.ca), based on 2011 census data for each province/territory for children zero to 17 years of age.

RESULTS

Respondents

Of 32 CPSN members, a total of 29 (91%) responded to the questionnaire. An additional 182 non-CPSN sleep facilities across Canada were contacted to determine whether paediatric patients were seen at their facility and 66% (121 of 182) responded to a short telephone questionnaire. Of these, 67 of 121 (55%) respondents indicated that they see patients <18 years of age. However, only 30% (36 of 121) and 19% (23 of 121) confirmed that they see children ≤12 years of age or ≤8 years of age, respectively.

Sleep specialists

Considerable disparities across provinces/territories were noted in the location of practice of paediatric sleep practitioners. Of note, Alberta is the best-served province, with approximately 167,000 children per practitioner. In comparison, British Columbia has approximately 282,000 children per practitioner. In Quebec, there are approximately 191,000 children per practitioner, whereas in Ontario there are 247,000 (Figure 1).

Figure 1).

Thousands of children per practitioner according to province/ territory. Note that there are no practitioners in the Yukon (paediatric population 7202), Northwest Territories (11,306), Nunavut (12,483), Saskatchewan (244,190), New Brunswick (140,291), Prince Edward Island (PEI) (29,297), and Newfoundland and Labrador (92,766)

The majority of CPSN respondents (22 of 29 [76%]) practice in tertiary care hospitals, while three of 29 (10%) practice in adult tertiary care hospitals, one of 29 (3%) practices at a community hospital, one of 29 (3%) practices at a rehabilitation facility and five of 29 (17%) practice at community office practices or independent heath facilities (Figure 2A). Some respondents practice at more than one location. The majority of respondents (17 [59%]) are affiliated with the respirology department of their respective institutions (Figure 2B) and almost all (27 [93%]) are affiliated with sleep clinics and/or sleep laboratories (Figure 2C). Of these 27, six were affiliated with a sleep clinic but not a sleep laboratory, and two were affiliated with a laboratory but not a clinic. Only two respondents (7%) have obtained certification from the American Academy of Sleep Medicine, whereas 11 (38%) others have completed some other form of training in paediatric sleep medicine.

Figure 2).

Location of paediatric sleep medicine practitioners, reported according to type of practice facility (A), department affiliation within location of practice (B), and clinic and laboratory affiliation (C). ENT Ear, nose and throat

Sleep laboratories

Sleep laboratories are present in the facilities where 25 (86%) of respondents practice. A total of 17 facilities were represented by respondents, 13 of which were located in children’s tertiary care hospitals. Considering only paediatric sleep laboratories in children’s tertiary care centres, the number of sleep studies performed per year in children ranges from 55 to 700 (median 480). In sleep laboratories outside of children’s tertiary care centres where both paediatric and adult studies may be conducted, the number of sleep studies performed varied greatly, with a range of 400 to 4000 per year (median 1100). The availability of sleep studies varies widely according to province/territory (Figure 3). This translates to a wait time of <1 month in some centres and up to 1.5 to 2 years in others.

Figure 3).

Number of children in each province/territory per sleep study per year. Note that there are no practitioners in the Yukon (paediatric population 7202), Northwest Territories (11,306), Nunavut (12,483), Saskatchewan (244,190), New Brunswick (140,291), Prince Edward Island (PEI) (29,297), Nova Scotia (172,648), and Newfoundland and Labrador (92,766)

The number of beds for polysomnography in children’s tertiary care centres ranged from one to four (median three beds, inter-quartile range [IQR] two to four beds). At other laboratories that see children, the range was two to 12 beds (median 5.5 beds; IQR 2.8 to 10.5 beds). At children’s tertiary care centres, each technologist is responsible for one to three patients per night (median 1.5 patients; IQR 1 to 2 patients). At other laboratories that see children, the range is two to three patients per technologist (median three patients; IQR 2.25 to 3 patients). At children’s tertiary care centres, sleep studies were performed between one and seven days per week (median four; IQR 2.5 to 5 days per week). At other laboratories that see children, the range was four to seven days per week (median six days; IQR 4.5 to 6.8 days).

There are many referral sources for paediatric polysomnograms. The majority of patients are referred by respirologists (22%). Others are referred by general paediatricians (15%), psychiatrists (15%) and neurologists (15%). A smaller number are referred by family physicians (14%), dentists (7%) or psychologists (2%). There is also wide variety in the reason for referral for sleep study (Table 1). The majority of patients referred to the sleep laboratory were seen for assessment of SDB (Table 1). Assessment of children with suspected SDB was the most common reason for referral (89%). The next most common patient groups referred for SDB assessment were patients with underlying obesity (11%), neuromuscular disease (8%) and craniofacial anomalies (6%).

TABLE 1.

Types of patients seen in sleep clinics and sleep laboratories for assessment of sleep-disordered breathing

	Overall	Sleep clinic	Sleep laboratory
Suspected obstructive sleep apnea needing tonsillectomy and adenoidectomy	45.4	41.1	45.4
Neuromuscular hypoventilation	7.4	7.7	7.4
Central hypoventilation due to brain stem lesion	1.9	2.0	1.9
Invasively ventilated (via tracheostomy)	2.2	2.4	2.2
Obesity	14.2	15.6	14.2
Congenital central hypoventilation syndrome	1.6	1.7	1.6
Down syndrome	9.4	10.3	9.4
Craniofacial abnormality	5.5	6.0	5.5
Continuous positive airway pressure/bilevel therapy titration	2.4	2.6	2.4
Stridor	2.0	2.2	2.0
Cardiac condition	0.5	0.0	0.5
Other: Sleep apnea	7.5	8.2	7.5

Data presented as mean %. In cases in which respondents’ answers totaled >100, they were rescaled to add to 100

Sleep clinics

A dedicated sleep clinic exists at the institution where 14 (48%) of the 29 respondents practice. It is attended by a wide range of multidisciplinary specialists, most commonly respirologists (22%), nurses and clinical nurse specialists (14%), respiratory therapists (9%) and psychologists (9%). The wait time to be seen in the sleep clinic was also highly variable, ranging from 0 to 1 month to 1.5 to 2 years, with a median of five months (IQR five to 7.25 months). The majority of patients are seen in sleep clinics for SDB or neurological sleep problems (Table 1).

DISCUSSION

The present study reveals a significant lack of resources and services for paediatric sleep medicine care for SDB across Canada. While a study performed almost 10 years ago called for additional resources for adult sleep medicine in Canada and noted a similar lack of resources in several other countries, there is an even greater paucity of sleep resources for Canadian children today (12). According to our survey results, there are approximately 9185 paediatric polysomnograms performed in Canada each year at CPSN centres, with some additional studies likely performed at other sites. Assuming a low prevalence of 1% of OSA, the most common type of SDB, in the general paediatric population of 6,923,899, there are at minimum 69,239 children with SDB across Canada. Even if only affected children were tested with polysomnography, this nevertheless represents 7.5 times more children than current testing capacity, suggesting a gross shortage of paediatric sleep diagnostic resources for SDB in Canada. This does not consider high-risk groups with greater expected prevalence of SDB. However, it is even more striking than the current state of adult sleep laboratories in Canada, where there are 3.7 more adults with sleep apnea than current testing capacity (13). Furthermore, knowing that children use excessive resources in the year preceding their adenotonsillectomy (2), and their potential vulnerability to widespread sequelae from delayed treatment, the lack of resources is even more concerning.

Alarmingly, in some areas of the country there is no availability of testing for respiratory sleep disorders and patients are required to travel significant distances to obtain diagnostic services. Given the limitations of oximetry testing for SDB (7) and the lack of valid portable monitors in widespread use, there is a dire need for polysomnography to avoid morbidity in children with SDB. For otherwise healthy and obese children, this includes neurobehavioural compromise and risk of cardiometabolic disease (1), whereas in select complex medical conditions, such as neuromuscular disease, establishment of nocturnal hypoventilation using polysomnography will prompt initiation of noninvasive ventilation, which increases quality of life and longevity (14,15).

We suspect that the majority of paediatric sleep studies are likely conducted in a tertiary care paediatric setting because of resource demands and the additional complexities of studying children, who may be less cooperative than adults. There were no differences between patient populations of laboratories and clinics reported in the present survey (Table 1). This likely also reflects the complexity of medical conditions present in many of those undergoing testing and, therefore, the need for specially trained technologists whose attention is focused on a single or two patients to conduct the tests.

Paediatric sleep specialists focusing on SDB primarily practice in tertiary care paediatric centres, and the majority are affiliated with a respirology department. This is likely reflective of the incorporation of management of paediatric sleep disorders into many paediatric respirology training programs. Paediatric sleep medicine is not yet its own medical discipline in Canada, although training in elements of paediatric sleep medicine may be incorporated into training of paediatricians, psychologists, psychiatrists, developmental paediatricians and others. In addition, proximity to sleep laboratory resources located in the tertiary care centres likely influences practice locale. Nonetheless, there are significant disparities in geographical location of paediatric sleep practitioners, with some areas of Canada less well-served than others. For example, the single practitioner in Nova Scotia serves the entire Atlantic region, where there are 435,000 children per practitioner. Yukon, Northwest Territories and Nunavut do not have any sleep specialists, despite a paediatric population of approximately 30,000.

Even in the presence of available sleep specialists and resources, however, demand for paediatric sleep services to assess SDB is exceeding capacity. Wait lists in some areas may be as long as one to two years to see a sleep physician or obtain polysomnography. This is especially concerning in light of the current Canadian Thoracic Society guidelines for adults, which recommend that all adult patients with suspected OSA undergo objective testing within six months and that those at high risk, with associated comorbidities, be tested within four weeks (16). No such guidelines exist for children, and many are waiting much longer than the adult guidelines suggest. Given the rapid changes associated with growth and development in children, and the known sequelae of sleep disorders in children, benchmarks for wait times in children may need to be even shorter than in adults.

There are many potential reasons why sleep services for SDB are lacking in Canada, including a lack of formal training for sleep specialists. Unlike in the United States, there is no formal training program, nor a means of certification for paediatric sleep services. While paediatric sleep training may form part of subspecialty training in other disciplines, this is at the discretion and expertise of the current supervisory staff. Fifty-five percent of paediatric sleep specialists responding to the present survey have not participated in the American Board of Sleep Medicine certification, but have undergone clinical training in paediatric sleep medicine. Remuneration for services likely also plays a role. Because sleep medicine is a new and developing field, until there is a critical mass of trained individuals in the country, this training may not be widely available and primary care practitioners may lack confidence and knowledge in managing patients with sleep complaints (17). Furthermore, paediatric sleep laboratories are largely confined to tertiary care centres, likely, in part, because of the complexities of studying young children and the necessity of medical back-up should significant difficulties be encountered. By virtue of the necessary staffing ratios of technologists to patients and the cost of technologists with additional expertise, community laboratories may not be economically viable. Remuneration for sleep studies conducted on children is the same as for adults, where three to four patients per technologist are required for a laboratory to be profitable, whereas one technologist per one or two patients is often needed for children. The technologists who perform the studies require additional expertise in managing children, which is also not widely available. Even under the best case scenario, access to polysomnography may not mean easier or better access to treatment for SDB in children given the limited availability of paediatric sleep physicians.

There has been a paradigm shift in the pathophysiology of SDB in children, in parallel with the increasing obesity epidemic. Approximately 12% of Canadian children are obese (18). The prevalence of SDB in children with obesity is 13% to 66% (19–21), which may be up to 4.5 times as high as in the general population (22). Obesity greatly increases the proportion of children at risk for SDB and requiring evaluation for SDB. Undiagnosed SDB is associated with negative health consequences, including difficulties with learning and attention, cardiovascular and metabolic dysfunction (1), which result in morbidity and mortality in adulthood. Treatment of these conditions at the early stages of development may avoid the development of many of the secondary health consequences for these children. Early intervention is, therefore, especially crucial in childhood because there may be a period of vulnerability that predisposes children to adult-onset disease (23). It is also difficult to identify which children need treatment in an efficient, cost-effective manner and how quickly based on the current system because the delays are so significant.

Only 43% of children referred for polysomnography are otherwise healthy and are being referred for assessment of SDB in the context of enlarged tonsils and/or adenoids. Some of these children may have undergone an oximetry screening or other test, such as unattended polysomnography, to evaluate for SDB and others may not be tested preoperatively. It is estimated that only 12% of children undergo polysomnography before adenotonsillectomy, despite recommendations of the Academy of Otolaryngology-Head and Neck Surgery Foundation and the American Academy of Paediatrics, confirming the role of the polysomnogram in the evaluation of SDB for children (1,24,25).

While the present study was the first to assess paediatric sleep resources in Canada for SDB, it had several limitations. Our response rate to the survey was 94% from CPSN members. It is possible that the number of sleep studies performed on children in the community has been underestimated because 34% of those contacted by telephone did not indicate whether they study children. While some information on nonrespondents may be lacking, these were listed as facilities for adults on websites or other listings, and are, therefore, less likely to see substantial numbers of patients <18 years of age, particularly much younger children. Furthermore, of those who participated in the telephone survey who indicated that they see children, it is not known what proportion of their patients are <18 years of age. Nonetheless, each of the tertiary care paediatric hospitals with a sleep laboratory was represented by respondents. We hypothesize that the majority of children undergo polysomnography in paediatric tertiary care laboratories, particularly those with complex medical conditions. Despite the lower response rate from non-CPSN facilities, we believe that survey responses have been obtained from the majority of centres that assess large numbers of children for SDB.

CONCLUSION

An increase in paediatric sleep medicine services will be required to address the needs of Canada’s children with SDB. There are currently insufficient resources to meet today’s demands for polysomnography and access to paediatric sleep specialists. Furthermore, there are geographical disparities in access to diagnostic tests and specialists. The results of the present study highlight the need for increased paediatric sleep resources in Canada to effectively diagnose, treat and prevent morbidity associated with paediatric SDB.