How to approach pediatric sleep medicine in British Columbia: A consensus paper

Some Canadian children’s hospitals have sleep labs, but very few have an interdisciplinary sleep service. A concentrated action plan for pediatric sleep information and knowledge distribution has not been implemented in any province. We believe that public health strategies need to be developed in collaboration with national and international organizations, such as the Canadian Sleep Society, the Canadian Paediatric Society, and the American Academy of Sleep Medicine. We also believe that we need a comprehensive interdisciplinary and multidisciplinary sleep service for children in BC. 

In order to determine the pediatric sleep medicine needs in BC, the Sleep Research Group at BC Children’s Hospital (BCCH), with the support of the Child and Youth Health Re­search Network (funded by the Michael Smith Foundation for Health Research) and the Child and Family Research Institute, organized a consensus meeting, Meet the Needs, Close the Gaps, on 25 June 2007, at BCCH. Members of the clinical research team, guest speakers, and health care professionals (see box) met to discuss how the existing pediatric sleep medicine gaps in BC could be closed and how current needs could be met. A summary of this discussion has now been submitted to the decision-makers at BCCH and the Provincial Health Services Authority.

Background
In recent years, concerns have been expressed worldwide about the in­creasing number of children and adolescents whose sleep is inadequate (e.g., nonrestorative or disturbed).[1],[2] This problem has been declared a major public health concern and even an epidemic. The growing tendency to sleep less is due to social, technological, and medical changes, including an increased exposure to light at night.[3]-[5] Demands placed on children’s time (e.g., higher academic expectations that require more hours of study) are affecting their sleep. In the US, researchers estimate that 15 million children are affected by inadequate sleep.1 A Canadian survey also indicates frequent sleep deprivation in children.[2] In addition, a large group of children with medical and neurological disorders are known to have hard-to-treat chronic sleep disorders.6,7 The burden of care for the caregivers of these children may be so heavy that they are forced to request alternate care.[8] 

Sleep is a critical restorative brain function, which affects an individual’s behavior, intellectual functioning, health, and quality of life. The behavioral manifestations of inadequate sleep include inattentiveness, impulsivity, poor interaction with peers, hyperactivity, aggressiveness, mood difficulties, and depression.[9] In adolescents, suicide attempts are closely linked with sleep deprivation and depression.[10] Sleep deprivation can result in school failure due to impaired cognitive functioning, verbal performance, abstract reasoning, and memory.[11] Persistent sleep difficulties also lead to severe health problems such as high blood pressure, obesity, diabetes, immunological deficits, and cancer.[12]-[14] Thus, the costs of inadequate sleep in children and adolescents are huge and compounded by the fact that when children do not sleep their families do not sleep, or at least have sleep difficulties.[15] While there has been no estimate of what this costs in Canada or BC, it has been estimated that the annual cost of insomnia in the US is close to $14 billion.[16] 

Impact not recognized
Despite these profound effects, the sleep disturbances of children are markedly underrecognized and undertreated in BC and many other regions in Canada. This is because of a lack of public awareness of the importance of sleep, a lack of sleep services, and inadequate training of health professionals. Parents often fail to ask for help because they do not realize the serious consequences of their children’s sleep difficulties or they perceive that the sleep disturbance is an inevitable part of a neurological or health condition. Yet the vast majority of sleep problems can be adequately treated and the needless suffering of these children and families can be prevented.[17]

One of the challenges when diagnosing pediatric sleep difficulties in­volves the distinction between physiological and pathological causes. For example, up to 80% of infants younger than 1 year have transient sleep difficulties that are no more than physiological adaptations. In contrast, almost 80% of patients with neurodevelopmental conditions, such as Down syndrome, have pathological sleep dif­ficulties.[18] This unclear physiology/pathology distinction has affected the perceptions of parents and health care professionals about sleep conditions. 

Pediatric sleep disorders have been and often still are perceived as circumscribed entities, transiently or chronically affecting the well-being of individuals. They are not viewed as a major physiological dysfunction that directly affects physical, neurological, and emotional development, be­havior, health, and quality of life. Thus, the impact of pathological sleep disorders is often unrecognized and sleep disorders are left untreated, reflecting the slow or inefficient res­ponse of health care systems to new knowledge.[19] Together, the social trend toward less sleep, the unclear distinction between physiological and pathological causes of sleep disorders, the slow response of the health care system to new information about sleep medicine, and the great number of misdiagnosed and undiagnosed sleep disorders have resulted in a gaping hole in the health care system. 

Information not disseminated
The sleep-related knowledge needed to support efficient and sufficient sleep is not being conveyed successfully to the public. Despite constant media focus on a “sleeplessness epidemic,” contradictory information is often presented in an unsystematic fashion. Health-based information about sleep may be resisted by some groups, such as adolescents, who might see prioritizing sleep as “un­cool.” Similarly, schools and recreational programs for children and adolescents occasionally ignore the needs for sleep hygiene and exacerbate un­healthy attitudes to appropriate sleep. We need a communication strategy that can effectively convey information about sleep and positively influence the sleep perceptions and choices made by health care professionals, public institutions, and the community at large. Speaking of sleep health and the positive effects of restorative sleep rather than of sleep hygiene or sleep disorders would be the first step.

Proposal
For the benefit of all children, and particularly for those who have chronic health problems, we recommend developing a public-health-based communication strategy, involving stakeholders, and implementing a new provincial medical program, the Interdisciplinary Pediatric Sleep Service Program, based on multidisciplinary public health service concepts.[20] These initiatives are essential and long overdue in BC.

Develop communication strategies
A Canadian and, in time, an international web forum are needed so that professionals can share experiences and present relevant overviews. As well, public education activities are needed, such as the Mini Med School series of the Child and Family Research Institute. In addition, complementary knowledge dissemination strategies addressing the lay public should be considered to focus on the impact of sleep health on well-being and quality of life. For example, educational materials should be tailored for high school students and other materials for the elderly.

Involve stakeholders
The main goals of health care are to inform the public about current understandings and recommendations and to provide patients with a service that is delivered equitably and ethically. To achieve these goals, we need to understand the roles and needs of different health care providers, such as physicians, public health nurses, therapists, and social workers, and to em­power them to close the sleep-service-related gaps at the level of care they offer. Patients, professional societies, unions, associations, special interest groups, and the government all have their own visions for health care based on their perceptions and interpretations of existing challenges. The expectations of these stakeholders and strong financial pressures shape the scope and direction of health care development and will similarly influence our public education activities as well as the suggested sleep program. Therefore, the implementation of this new Interdisciplinary Pediatric Sleep Service Program requires transparent discussions, incentives, and guidelines for every involved group in order to provide a multidisciplinary approach offering service at different levels. Our main aim is to focus on the interests of children and their caregivers as individuals while paying attention to their well-being and quality of life. 

In order to involve stakeholders we have created a provincial professional network, which includes the BC Medical Association, the BC Pediatric Society, Child Health BC, and dif­ferent provincial programs (e.g., the Infant Development Program) as well as teaching institutions (e.g., University of British Columbia, Simon Fraser University, and Thompson Rivers University). We have also started to establish a Canadian professional network through the Canadian Sleep Society and the Canadian Paediatric Society. 

Implement three-level service
Clinical evidence[19] and health econo­mic studies21 suggest that a “bottom-up” approach is the best way to create a multilevel pyramidal service model that focuses on screening and structured referrals based on algorithms, decision trees, and consensus recommendations. In keeping with the organization of the Canadian health care system, this approach involves medical services at the primary, secondary, and tertiary prevention and care levels:

1. Public education at the primary health care level. The first level in our pyramidal service model relies on campaigns using appropriate, easily understood language and delivering messages from a patient-centred point of view. An example would be an information campaign for parents and expectant parents that emphasizes safe and secure sleep practices for infants and reduces the negative association between sleep and sudden infant death. Another example would be knowledge translation by well-known and respected athletes or coaches whom adolescents will listen to and identify with. However, the main target groups for public education will be health care professionals, particularly those who are involved in the management of children with chronic health conditions (e.g., therapists and social workers). A series of workshops will help professionals working with children and their families follow up on sleep difficulties.

2. Structured knowledge dissemination among professional and associated partners at the second­ary health care level. The second level of the pyramidal model relies on subspecialty support and development. Experience has shown that it usually takes up to 15 years, almost a generation, before a new subspecialty is appropriately implemented in the health care system and can provide sufficient service. Therefore, until a pediatric sleep program is fully functioning, every subspecialty will be responsible for sleep problems in their target population.[22] Since sleep medicine has recently been accepted as a new subspecialty in the US and in several other countries, we will need national courses and conferences to train and support subspecialists in different fields from all major regions of Canada. In collaboration with various subspecialties, we will continue to develop a pediatric sleep curriculum and will offer a series of pediatric sleep medicine courses to interested professionals.

3. Structured knowledge generation and dissemination among professionals and associated partners at the tertiary health care level. The third level of the pyramidal model relies on specialists and subspecialists who have an improved understanding of sleep disorders. Pediatricians and pediatric subspecialists will have to pay more attention to the nocturnal phases of various disorders and to the interfaces of nocturnal and diurnal disease connections. They will need to understand certain associations such as the relationship between muscle spasm or gastroesophageal reflux and sleep fragmentation in children with special needs,[23] or between disordered sleep and melatonin deficiency in patients with brain injury.[24] The im­proved understanding of sleep disorders will lead to a more holistic approach, which will have a major effect on the well-being and quality of life of patients and their caregivers. This approach will also decrease the burden and reduce the economic impact of sleep disorders on the health system. Again, depending on the national consensus, a series of specific workshops, with financial support, will be provided to enhance high-quality structured knowledge distribution.

Conclusions
Current international literature clearly shows the importance of implementing pediatric sleep services at different levels in the health care system.[25] This and the clinical experience of participants at the consensus meeting indicate that we need to modify the perception of the public and health care professionals about sleep issues by providing information and implementing a multidisciplinary and interdisciplinary three-level sleep service. With the support of several provincial and national organizations, societies, and associations, BCCH plans to take the lead in the creation of a comprehensive sleep program. Adequate funding will be required for the basic clinical service and for the comprehensive public education program. Funding will also be needed for evaluation of the health, economic, and social impacts of the proposed program, as all new public health services require careful follow-up assessments. 

Since quality increases with transparency, our activities will be shared with provincial, national, and international organizations. Whereas pediatric sleep programs exist in some neighboring US states and Canadian provinces, including Washington and Alberta, BCCH has a limited sleep service that cannot adequately serve all regions of BC. This deficiency must be remedied. As health professionals in one of the last provinces to implement such a program in Canada, we will have an opportunity to learn from others as we close the gaps in pediatric sleep medicine in British Columbia. 

Competing interests
None declared.

Dr Ipsiroglu is a clinical associate professor in the Division of Developmental Pediatrics at the University of British Columbia and BC Children’s Hospital (BCCH) in Vancouver. Dr Jan is a clinical professor and a senior research scientist emeritus in the Department of Pediatrics at UBC and BCCH. Dr Freeman is a professor emeritus in the Department of Psychiatry at UBC and clinical head of the Neuropsychiatry Clinic at BCCH. Dr Laswick is a clinical assistant professor at UBC and BCCH. Ms Milner is a senior research consultant in the Clinical Research Services Unit and an adjunct professor in the Child and Family Research Institute at BCCH. Dr Mitton is an assistant professor in the Health Studies Program, Faculty of Health and Social Development, at UBC Okanagan. Mr Wasdell is a research consultant in the Melatonin Research Group at BCCH. Dr Wensley is a clinical professor in the Division of Respirology Medicine, Department of Pediatrics, at UBC and BCCH. Dr McKellin is an assistant professor in the Department of Anthropology at UBC.