Our Vision
Our vision is to reduce needless suffering caused by sleep problems & improve the health outcomes for children with (and without) neurodevelopmental conditions and sleep problems. We aim to do this through close collaboration and bi-directional communication with parents, caregivers, and healthcare professionals.
In order to meet the upcoming communication needs of such a growing network, which uses a participatory research concept and enables self assessment of parents and shares assessment tools with practitioners, we developed a communications concept. Within this scope, the website is developed under the domain www.sleepnetwork.org.
Advocacy & Personalized Precision Medicine
Based on our experience and knowledge in paediatric care, we understand advocacy to be about empowering yourself or others and influencing people. It is about raising awareness, disseminating knowledge, connecting people, and finding new ways to share information in order to approach problems in healthcare.
As members of the Sleep Network (previously Children's Sleep Network), we believe that there is an incredible need for person-centered medicine, which will eventually lead to the implementation of the new Personalized Precision Medicine concept (Predictive, Prevention, Participatory, Patient oriented) in pediatric clinical practice. Personalized Precision Medicine utilizes an explorative, transdisciplinary approach for optimizing understanding and developing a shared language, thereby reducing communication barriers. For this purpose, we will use this website.
In context with our website project we have asked a parent advocate to review this report and provide comments about the uniqueness of our research activities.
I am providing comments on the activities described in this report from the perspective of a mother of a teenager with diagnosed ADHD (not on medication) and low iron, a younger child with restless legs syndrome, daytime fatigue and suspected ADD and a personal history of iron deficiency and sleep disorders (including RLS).
Having children that are inattentive and disruptive is challenging, especially if quality of sleep is also affected. The idea of having a term that describes a range of disruptive day and nighttime behaviours (as H behaviours) is reassuring and an important starting point in exploring the best treatment options. What I find unique about the activities described in this report is the bringing together of so many local, national and international experts who are all trying to understand, assess and treat H-behaviours. I am particularly interested in the idea of sleep as a first intervention and in assessing sleep and nutritional deficits, and how they might affect H behaviours. I would much rather explore diet and sleep before deciding on medications for ADHD/ADD as there are side effects. I like the idea of using an app to track H behaviours at home, because kids behave differently in the lab than at home and because it allows the family to actively participate in the assessment process. Finally, the communication and assessment approaches described in this report (i.e. in-depth history taking and developing a shared language) resonate with me, because often there is not enough time to fully discuss and explore the challenges we experience at home and it is nice that health professionals take their time to understand what is happening and find the best ways to communicate with families about their experiences and challenges.
Sleep Research
Sleep is essential! It is an integral component of health, wellbeing, and quality of life. Sleep is also vital for the healthy development of children. Up to 90% of children with complex neurodevelopmental conditions suffer from sleep problems classified as circadian rhythm sleep disorders (CRSD). These affect initiation and maintenance of sleep, generally categorized as insomnia.
CRSD's are characterized as a misalignment between the patient's sleep pattern and what is desired or regarded as the societal norm; typically, these impact the patient's, and his/her caregiver's, daily life. Although consensus and best practice guidelines recognize sleep problems as an important comorbidity in children with complex chronic conditions, the recognition of sleep problems and their treatment is a major challenge in clinical practice. This is mainly due to a lack of knowledge about these conditions and limited diagnostic capacities, or unfamiliarity about treatable sleep problems among health care providers and caregivers. Still many people think that the symptoms of sleep problems are "just part of the underlying condition".
In the absence of known causal treatments for many neurodevelopmental/-psychiatric conditions, clinical interventions largely rely on pharmacological rehabilitation, which include anti-depressants, antipsychotics, and psychostimulants. These treatments can be beneficial, although the results are inconsistent. Some of the reasons for this inconsistency is the complex and multifactorial nature of behavioural presentation of neurodevelopmental conditions, the age of patients, unexpected and/or harmful drug reactions, and the individual biology of the patient. Given the essential role of sleep in cerebral functioning, and the detrimental consequences of sleep problems, recognizing and treating sleep problems has enormous potential to improve life trajectories of children with neurodevelopmental/-psychiatric conditions.
In other words: we see sleep as a new treatment paradigm or first-line intervention before medication based interventions start.
Advocacy is integrally linked to research, knowledge dissemination, and clinical practice, and because of the high subjectivity of advocacy, we have hosted as a Town Hall Meeting, where caregivers, parent advocates, and community members have come together to share knowledge and develop strategies to improve sleep-related healthcare in the future. For more information, please see the Sleep2Treat Workshop videos below.
Focus on Neurodevelopmental Conditions
Children and adolescents with neurodevelopmental conditions are at high-risk for developing sleep problems triggering challenging/disruptive daytime behaviours and/or comorbidities such as inattention, hyperactivity and cognitive and emotional impairments. While daytime morbidities are easily recognized and treated with various psychotropic (e.g., stimulant) medications, clinical experience shows that underlying sleep problems may remain masked and appropriate treatment missed. In addition, nighttime hyperactivity of some children with neurodevelopmental conditions and sleep problems might worsen upon treatment with psychotropic medications.
Our clinical experience reveals that missed sleep problems place a tremendous burden on both the patient and their family. Neglected or undiagnosed sleep problems can aggravate already existing health and behavioural challenges, consume emotional resources, lead to breakdowns within the families, and cause increased and inappropriate use of various health services and drug-based medical treatments. In other words, missed sleep problems lead to crises.
Imagine what a good night's sleep can do! Advocate for sleep! Advocate for getting your sleep problems assessed!
Better Nights, Better Days, Less or No Medications!