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Hypersomnia disorders are associated with substantial medical, mental, and social turmoil. Those with hypersomnia feel sleep deprived leading to the inability to focus making it difficult to succeed in school, work, and in personal relationships. With a reduced quality of life, people with hypersomnia disorders feel a higher level of mental health symptoms like depression and anxiety. A survey study conducted by Neikrug, Crawford, & Ong (2017), focused on how formal nonpharmacological behavioral sleep medicine can decrease the symptoms present in those with hypersomnia disorders, and determine if those techniques alone can improve their overall quality of life. The participants included in this survey study were given a population-based internet survey and asked general questions about their experience with hypersomnia. The main body of this review will explain the experiment, procedure, methods, and results of this survey study as well as a discussion of the results and methods used in the study.
Previous research was performed pertaining to hypersomnia disorders which are broken down into both narcolepsy and idiopathic hypersomnia. The American Psychiatric Association (2013, as cited in Neikrug et al., 2017) relates all disorders in this category to having excessive daytime sleepiness, which debilitates one’s connection with the real world causing an increased risk of emotional and psychological problems. Despite getting adequate amounts of sleep, those with hypersomnia still experience involuntary sleep episodes. Due to the fact that there is not a cure for hypersomnia disorders, “Pharmacological approaches are considered the first line of treatment” (Morgenthaler et al., 2017 as cited in Neikrug et al., 2017). While pharmacological treatment may be the first treatment used against excessive daytime sleepiness, it does not completely reduce the symptoms of hypersomnia disorders. This has led to the experimentation of nonpharmacological methods to manage the symptoms left unchecked.
Before Neikrug et al.’s (2017) research, they found that there was a lack of previous studies conducted (all research was conducted over 14-39 years ago) to address the emotional and physical strains that affect those with a hypersomnia disorder. Given the fact that those with hypersomnia disorders live with a lifelong burden from the disease, Neikrug et al. (2017) decided to conduct this survey study to help integrate more conclusive data to the study of treatment options for those with hypersomnia. Due to previous studies that lacked analysis of behavioral sleep medicine effects on patients with hypersomnia disorders, it was unclear what the importance of these alternative treatments could be in reducing the symptoms of excessive daytime sleepiness. The experimenters hypothesized that those with hypersomnia disorders will rely on both pharmacological and nonpharmacological treatments, and would support the use of formal behavioral sleep medicine such as support groups and mindfulness practices as possible treatment options. The experimenters also wanted to evaluate whether those diagnosed with hypersomnia disorders experience higher levels of depression and anxiety symptoms (Neikrug et al., 2017).
While Neikrug et al.’s (2017) study was not conducted as a clinical trial, but rather as a population-based survey, this ended up limiting this study to act as a baseline study to develop a behavioral sleep medicine to reduce symptoms for those with hypersomnia disorders. Therefore, the primary goal of this study was to collect data on the need for behavioral sleep medicine intervention for those with excessive sleeping disorders, and their acceptability for these types of treatments.
The population-based survey was used for Neikrug et al.’s (2017) research to represent the population of people with hypersomnia disorders, as well as to use a survey that could keep patients anonymous to maximize honest responses. This was an internet-based survey that was designed using SurveyMonkey© that was supposed to be completed in less than ten minutes to increase participation because participants in the survey were not getting compensation for completing the survey.
To get the survey out to participants while also being anonymous, Neikrug et al. (2017) partnered with the organization Wake Up Narcolepsy to send the SurveyMonkey© out to members registered on their e-mail list. The survey was open for 29 days and two emails with the survey link were sent, one on August 8, 2014, and the second on September 5, 2014. Before the survey began, the responders were given an explanation of the survey and the purpose of the survey, and were required to agree to take the survey before any of the questions were presented.
Initially, there was a total of 518 respondents who took part in the voluntary survey. Participants were required to be at least 17 years old and also had to self-report a diagnosis of idiopathic hypersomnia or narcolepsy. Three responses were deemed as duplicate responses and were removed, and an additional 50 responses were removed due to the fact that they did not complete the survey (only answered three questions about agreeing to participate, what diagnosis they have, and any types of nonpharmacological techniques they use). An additional 38 responses were removed due to identifying themselves as a responder for someone else. One was removed for not identifying a diagnosis, seven more were removed for claiming to have both idiopathic hypersomnia and narcolepsy, and an additional 20 participants were removed for claiming they have not yet been diagnosed. The last 28 participants that were removed responded that they were under the age of 17 or did not report their age. The participant’s age group for this survey was ranged between 17 and 72 years old, and the mean age for the first noticed symptom of hypersomnia was 17.9 ± 9.3, meaning that participants observed symptoms of hypersomnia between the ages of 9 and 27 (Neikrug et al., 2017).
Of the 371 participants still remaining 65.2% self-identified themselves as having narcolepsy while the remaining 34.8% identified themselves as having idiopathic hypersomnia. 83.3% of respondents reported the use of medication to manage their hypersomnia, with over 90% of respondents reporting the use of nonpharmacological techniques. While the use of nonpharmacological strategies was highly reported, it was also stated that the effectiveness of those techniques were rated as being the least effective reliever of symptoms (4.3 being the highest mean rating of effectiveness out of 10). While pharmacological and nonpharmacological treatments can be effective in managing symptoms of hypersomnia, “respondents reported that the disease symptoms have had a significant impact on their quality of life” (Neikrug et al., 2017). Between 61% and 91% of participants experience at least one form of mental health symptoms. This causes difficulties between school, work, and relationships with others due to the fact that it causes those with hypersomnia disorders to actively avoid situations that could cause excessive daytime sleepiness (Neikrug et al., 2017).
While many participants reported a low effectiveness rating for the use of nonpharmacological strategies, when they were asked in the survey if they were interested in formal nonpharmacological treatments, 86% showed interest in support groups, 74% showed interest in cognitive-behavioral therapy, and 72% showed interest in mindfulness techniques like yoga. Even though a high majority of respondents showed interest in attempting formal nonpharmacological treatments, the survey also asked for reasons why respondent would have little to no interest in trying these treatments, and it was brought up that they either have no time, they question how effective this treatment is compared to pharmacological treatments, and how some participants are already satisfied with their current pharmacological treatment (Neikrug et al., 2017). While this survey may have shed light on the effectiveness of pharmacological and nonpharmacological treatment options, further study needs to be conducted to clinically prove the effectiveness of each treatment option to better help the community of those who are suffering from hypersomnia disorders especially because there is no cure.
In this survey study, Neikrug et al. 2017) collected participant data on the necessity, and interest in the use of formal nonpharmacological techniques for people with narcolepsy or idiopathic hypersomnia, as well as data proving that people with hypersomnia disorders experience higher levels of depression and anxiety. The data collected suggested that there is a more apparent need for formal nonpharmacological behavioral sleep medicine to help patients with hypersomnia disorders manage their symptoms of excessive daytime sleepiness, depression, and anxiety.
Neikrug et al. (2017) decided to conduct a population-based internet survey study rather than a clinical research trial due to the fact that there was a lack of previous studies involved with hypersomnia disorders. Even though a clinical trial was not performed, there was a lot of research data provided to help future studies perform behavioral sleep medicine services. While this survey was handed out through a patient-run organization for narcolepsy, the respondents were answering anonymously, therefore showing that there could have been inaccuracy in the diagnoses or responses as they could not have been proven. The survey was also designed to increase participation by making the survey short, due to the fact that there was no compensation for completing the survey, which could have resulted in inaccurate responses.
While Neikrug et al. (2017) was good at finding study limitations, some limitations and points of concern were missed. The study was published in 2017 which is relatively recent compared to other studies that were conducted 14-39 years ago, but while the study is recently published, the data was collected in 2014 making the data appear old due to the fact that advancements in medicine have evolved since then. In looking at the reported participants, this population-based survey was not a representative sample of the population because the sample contained only 13% males, while 87% of the sample was females. Though it is important to remove participants that impact the results negatively, 147 responses out of the 518 total responses received were dropped. One of the requirements for the participants was that they have to be at least 17 years old to participate which is not an accurate age to start because the typical onset of narcolepsy is between 10-20 years old, and the average onset of symptoms was determined to be eight years old in this study. Another problem observed with this study was that group differences were not observed besides those who have narcolepsy and those who have idiopathic hypersomnia, but the results could have been skewed due to gender imbalance which was not taken into account.
Beyond what Neikrug et al. (2017) believed was attributing to excessive daytime sleepiness, many other outside factors could have attributed to loss of symptom control through pharmacological and nonpharmacological treatments. While you cannot control when you have an involuntary sleep episode, factors like home life, stress and anxiety, weather, use of drugs or alcohol, caffeine, whether they have a scheduled sleep time, sleep disturbances, nightmares, and having an uncomfortable place to sleep are all factors that could not have all been controlled when questioning participants the effectiveness of pharmacological and nonpharmacological treatments.
- Neikrug, A., Crawford, M., & Ong, J. (2017). Behavioral Sleep Medicine Services for Hypersomnia Disorders: A Survey Study. Behavioral Sleep Medicine, 15(2), 158-171. doi:10.1080/15402002.2015.1120201
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