Researchers find a significant positive correlation between self-reported daytime sleepiness and attention problems for adult patients with narcolepsy and idiopathic hypersomnia, with both genders being affected equally.
The objective of research study “ADHD Symptoms Reported in Adults with Narcolepsy and Idiopathic Hypersomnia” was to examine the presence of attentional difficulties in hypersomnia by assessing current ADHD (attention deficit hyperactivity disorder) symptoms in adult patients diagnosed with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH).
The three clinical diagnostic groups in this study are categorized as disorders of central hypersomnolence by the ICSD-3. “Patients with these conditions report subjective experiences with sleepiness and attention similarly, warranting their combined inclusion in a study assessing the relationship between self-reported attention and daytime sleepiness among those with hypersomnia,” say research abstract authors Sara Kowalczyk, MA, MPH, a doctoral candidate in behavioral neuroscience at Boston University, and William DeBassio, PhD, MD, an associate professor of neurology at Boston University, in an e-mail to Sleep Review.
Background and Results
Dr William DeBassio, who also is a physician in the department of pediatric neurology at the Boston Medical Center, says the clinical assessment of attention is likely to be additive in treating patients with hypersomnia. “If attention and sleep are related, and the results from this study suggest that they are, then clinical assessment of both may be important to optimal clinical treatment for hypersomnia,” says DeBassio. “While many clinicians use tools like the Epworth Sleepiness Scale (ESS) to identify how their patients’ sleepiness changes over time, the use of attention-related clinical screening questionnaires may be equally useful, but currently under-utilized.”
For the study, 833 participants reporting a diagnosed hypersomnia condition from a physician and completed the Adult ADHD Self-Report Scale (ASRS) v1.1 and the ESS via an online survey. Over 60% screened positive for the likelihood of ADHD on the ASRS, while less than 13% self-reported having an ADHD diagnosis. In addition, there were no significant differences between the type of hypersomnia diagnosis on the ASRS or ESS.
The analysis also found:
- both genders reported problematic attention and ADHD diagnoses equally;
- there was a significant positive association between self-reported daytime sleepiness and attention deficiencies in an adjusted linear regression model;
- An adjusted, final linear regression model indicated that greater attentional deficiencies were also significantly predicted by:
- younger current age
- having a co-morbid depression diagnosis
- greater self-reported impulsivity
- greater current self-reported disease severity
- shorter current self-reported nighttime sleep length
The abstract, published in Sleep, notes that a linear regression analysis revealed a positive, significant relationship between ASRS and ESS variables. Essentially, the results indicate that self-reported attention and sleepiness are correlated among those with a central hypersomnia disorder. The clinical assessment of attentional deficiencies in individuals with a hypersomnia diagnosis may improve outcomes in patients with IH, NT1, and NT2.
Study Limitations
This research study was on a subset of participants in a sizeable anonymous survey research study, the Boston University Narcolepsy and Idiopathic Hypersomnia Patient Perspectives Study (BUNIHPPS). Due to the anonymous survey methodology, Kowalczyk and DeBassio note that a limitation of their study is that verification of diagnoses was not possible. Recruitment for the survey study took place through social media and patient advocacy organization announcements, with research brochures made available in 10 sleep clinics based in the United States. As such, Kowalczyk and DeBassio note that participants might not be representative of the total hypersomnia patient population due to self-selection bias.
Implications for Sleep Medicine
According to Kowalczyk and DeBassio, this study is the first to quantify the presence of current self-reported attention problems among hypersomnia patients using a validated adult ADHD screening questionnaire. That 60% of patients score in a range indicating likely ADHD is an important finding for sleep medicine physicians treating hypersomnia patients. “The study’s significant results positively correlate increasing sleepiness with more attentional problems, across multiple hypersomnia diagnostic categories and affecting both genders equally,” says Kowalczyk.
The findings indicate that the clinical assessment of attentional deficiencies can improve narcolepsy outcomes. According to Kowalczyk and DeBassio, attention can be assessed in adult patients using the ASRS v1.1. The free and easily accessible assessment, created by the World Health Organization, can be administered in either a 6 or 18 question version, and the summary scores can help clinicians by quickly identifying the hypersomnia patients who have self-reported problems with attention.
“Clinical assessment of attention may be useful in treating patients with hypersomnia due to the significant relationship with sleepiness,” say Kowalczyk and DeBassio. “Furthermore, assessing self-reported attention among adults using the ASRS v1.1 is quick, accurate, free, and easy to incorporate to a clinical setting.”
Kowalczyk and DeBassio say future research should focus on replicating the correlation between attentional deficiencies and increasing daytime sleepiness from large hypersomnia patient databases or registries for both adults and children. “Imaging studies including fMRI with objective attentional tasks may improve the understanding of the neural circuitry involved in performing attention tasks among those with hypersomnia, and in comparison controls or those with ADHD only,” explain Kowalczyk and DeBassio. “Future research should address how hypersomnia patients may be affected by the inattentive and hyperactive sub-types of ADHD.”
Cassandra Perez is associate editor for Sleep Review. CONTACT cperez[at]allied360.com
This is the best indicator of how pathetic the sleep disorders field is.
All I can say is “Wow.”
This is news?
Has anyone in the field googled “sleep deprivation symptoms?” Of course that’s not a serious question because no one with any kind of sleep-related background should need google to see a very direct link between EDS and attention.
This article strongly confirms my belief that the American Academy of Sleep Medicine is a joke.
There are many Facebook support groups for Idiopathic Hypersomnia and Narcolepsy. Wanna learn about these disorders? Forget about any so called “experts” in the field. Talk to the patients. It will be an eye-opening experience regardless of how much you think you know.
Looking back at this I agree that my tone and some of my comments were unnecessary. It is unfortunate that the link between hypersomnia and attention deficit hasn’t been common knowledge for years now among professionals like it has been among patients, but it is nice to see someone properly addressing it.
Dean Jordheim highlights the need for sleep specialists to “hear” what hypersomnia patients are telling them. I was undiagnosed for the first 25 years of my adult life. I have been treated with ordinary Ritalin – not Long-acting Ritalin which may appear to be convenient, but has side effects, affecting one’s nighttime sleep; moreover the stimulant dosage required to effectively control all symptoms [which is true, contrary to what is believed by sleep specialists since Robert E. Yoss] may far exceed the dosage maxima recommended for the approved stimulants, for anyone with more severe symptoms, who therefore require higher dosages urgently, simply to be able to function properly in every way, neurophysiologically. I have a university degree myself, studied the scientific method in experimental psychology in 1966-1969, and the first and most important premise is Observation. I am prescribed twice the Maximum recommended stimulant dose, but it was extremely difficult for me to convince my (wonderful, knowledgeable, narcolepsy-supportive) neurologist, but eventually he allowed it. All symptoms now under control. I have been one of the persons running the support group in Australia, only because I am now awake, can now sleep well for 8 hours daily, and as a result i am alert and able to read again. Dean Jordheim is right. We are not addicted to stimulants. We just need it to be able to function, like a diabetic may need insulin. Simple as that. Check the doses Yoss recommended. I am now 67. Thankyou. I take no other medication apart from Ritalin.
Elizabeth, can you tell us what stimulant you are taking that is allowing you to function well without side efects at such high levels?
I have IH/N, very recently diagnosed. My attention span is about as big as Dory’s (yes the DisneyFish). I can take up to 90 mg of adderal a day and still feel sleepy and tired most of the day. I can’t focus or concentrate for long and my personal life and work life suffer drastically. it’s only getting worse with age, I’m 37! I’m not real sure what this article is trying to say. maybe that IH/N and ADD are related. well DUH! you try focusing after you have been awake for 48-72 hours and see how well you perform. I’m to tired to even finish typing this….. maybe I shld ask my doc to change my meds. can anyone sum this article up that speaks Narcoleptic?
Perspective is an interesting thing and it would seem that my take on this study comes from a different angle than what has been shared so far by some other beyond sleepy voices. For those unaware, sometime ago, many in the hypersomnia community participated in an BUNIHPPS survey, helping to “create one of the largest and most complete databases to date on what it means to have NT1, NT2, or IH.” The results may not come as a surprise to patients living with the disorders but it is a huge accompmishment to have things quantitified — BUNIHPPS findings have the potential to not only be a spring board for further indepth/more specific research but could also help expand focused patient care. Thank you for your efforts and for bringing attention to and focus on our disorder.
Thank you for the article. It is interesting and makes sense that people suffering from Narcolepsy and Idiopathic Hypersomnia also suffer ADHD. Since these are rare diseases, not everyone realizes what someone suffering from these diseases will know that our attention span is less. Dean’s comment below is really rude and unnecessary. Education is important. I would have loved to have had a test done showing I had ADHD when I was diagnosed. It would have explained a lot that I was going through. Thank you for the excellent article!!
I was diagnosed with Attention Deficit Disorder in my early 20s and with Idiopathic Hypersomnia in my late 20s. My doctor and I are still in a process of trial and error to figure out exactly how to treat me. The biggest difficulty is that to do a whole sleep test, I would have to come off of the medication I was taking for ADHD, which has a three week withdrawal period, during which I would not be able to work… So we still have no idea how much of my issues are because of ADHD and how much is because of IH :/
I recently was diagnosed with Idiopathic Hypersomnia. Tried Rx of Vyvanse and Evekeo with little to no results…I can take either and sleep 2-3 hrs later. I have same effect with coffee as most stimulants just don’t do much…Could this be a sign of ADHD? I certainly have no hyperactivity just sleepiness..have the other symptoms of ADD like probably most people do but really have attention problems even while just talking with anyone. Seen Pulmonary,Cardiologist,Endo,and primary. Last visit Primary getting annoyed that meds won’t keep me awake or alert and recommended Pysch and or Neurologist..never depressed just always sleepy and even if I take a nap does nothing for me other that wasting time in bed!!