Sleep outcome measures

We are using the term inadequate sleep instead of sleep deprivation in our title for a number of reasons. First, few studies have aimed specifically to deprive children or adolescents of sleep. We describe some research on experimental sleep restriction in children but most of these studies fall far short of common deprivation paradigms in animals or even adult humans. Instead, most research in younger humans has assessed outcome measures such as school grades, self-reported sleepiness, and so forth as a function of variations in self-selected or usual sleep patterns with the expectation that children and adolescents who obtain lower than normal amounts of sleep will manifest deficits. Thus, inadequate sleep is defined by sleep characteristics of a sample. We also wanted to note some of the literature on sleep that is disturbed or disrupted due to disease processes such as apnea or periodic leg movements the duration of sleep in sleep disorders may or may not be shortened or restricted although it is likely fragmented and otherwise abnormal. We decided on the term inadequate sleep with the hope that it would encompass these different areas of concern. 

A number of other important research and clinical issues and questions have not been addressed for children and adolescents. How much napping occurs in school and out of bed What are the effects of sleep loss on metabolic processes, the immune system, and health outcomes in children and adolescents How do light exposure patterns affect sleep patterns and processes in children and adolescents How much and when do parents sleep and what role does a family s schedule of activities play in children s and adolescents sleep patterns What outcome measures have not been studied that are particularly important to parents and children What does sleep look like in underprivileged children and adolescents The list is long. 

Randomized, controlled trials of both behavioral and pharmacological treatments for behavioral disturbances using measures of sleep, daytime function, and impact on caregivers, in addition to behavioral and psychiatric outcome measures. 

Bourke and colleagues (35,36) assessed the effect of NIPPV on QoL and survival in patients with amyotrophic lateral sclerosis (ALS) in a randomized controlled trial. ALS patients were assessed every two months and randomly assigned to NIPPV or standard care if they developed either orthopnea (with MIP <60% predicted) or symptomatic hypercapnia. The QoL outcome measures were the SF36 and the symptoms domain of the sleep apnea QoL index. In ALS patients without severe bulbar dysfunction, NIPPV improved survival and maintained QoL. The survival benefit from NIPPV in this group was much greater than that from currently available neuroprotective therapy. In patients with severe bulbar impairment, NIPPV improved sleep-related symptoms, but did not confer a large survival advantage. 

Monitor compliance with CPAP therapy. CPAP machines have a built-in compliance meter to measure the hours used at effective pressure. Patients should use CPAP therapy for at least 5 hours each night. In addition to alleviating sleep-disordered breathing, CPAP therapy may improve cardiovascular outcomes. 

The Medical Outcomes Study 36-Item Short Form Health Survey and the Rhinoconjunctivitis Quality of Life Questionnaire measure not only improvement in symptoms but also parameters such as sleep quality, nonallergic symptoms (e.g., fatigue, poor concentration), emotions, and participation in a variety of activities. 

Weaver TE, Laizner AM, Evans LK, Maislin G, Chugh DK, Lyon K, Smith PL, Schwartz AR, Redhne S, Pack AI, Dinges DF. An instrument to measure functional status outcomes for disorders of excessive sleepiness. Sleep 1997 20 835-843. 

Although these valuations of human life are used elsewhere, they have not been widely used in sleep medicine. Patient preference can also be measured in utilities —the degree of pleasure or satisfaction derived from the purchases of a product, i.e., the patient s preference for a certain health state or outcome of a treatment. Perfect health is assigned a value of 1, and death a value of 0. QoL instruments and recent work in utility measurements have made further advances in health economic evaluations. 

A number of studies have included outcome variables with real world medical task components, either simulated or actual (see below) work performance measures. For example, one early study that examined the performance of 14 medical interns on an electrocardiogram (ECG) interpretation task in both the rested (mean 7.0 hr of sleep, range 5.5—8.5 hr) and the sleep-deprived state (mean 1.8 hr, range 0-3.8 hr) found both efficiency and accuracy of performance were... 

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