A new survey suggests patients’ sleep problems often go untreated

Most people with a health condition have a hard time sleeping well.  And one of the overwhelming reasons why sleep is difficult?  They’re stressed.

So say the results of a recent survey of more than 5,200 patients by the online network PatientsLikeMe. The findings make sense, right?  Yet the issue of sleep deprivation can be hard to spot and quantify among patients already suffering from other ills. Its causes are complex and varied, including factors like anxiety, pain and depression. And our specialty-centric medical system makes it difficult to design a comprehensive treatment.

PatientsLikeMe has been studying sleep issues for more than five years now, amassing patient-specific sleep data representing the experiences of 65,000 patients.  The recent survey revealed that most respondents – 64% – say they think they have a sleep problem, with over half saying they’d suffered for a year or more.  Only 13% had been diagnosed with insomnia, though the majority reported symptoms as defined by the National Sleep Foundation.

“While a common factor among the chronically ill, sleep problems are not generally on the clinical visit menu, even in questions where sleep is really critical like epilepsy,”  says Jamie Heywood, PatientsLikeMe’s co-founder and chairman and a TEDMED 2009 speaker. “There are a lot of things we think we know in medicine, but they aren’t measured in any way that allows you to do comparisons.”

Looking at multifaceted factors among a large population is one of the biggest challenges in medicine, he adds.

“Medicine stores data in largely a storytelling or narrative format, so when you talk to an endocrinologist, for example, and you ask them if their patients have sleep problems, they say a lot of them do. But they would not be able to say quantitatively how many do, or if there are treatments that are more or less effective for that population.

“We built PatientsLikeMe to advance understanding of the many variables of health across conditions” Heywood says. “Because we run these cross-condition studies, we can create much greater value than the current silo-based model creates.”

Stress Contributes to Sleep Problems, Makes Normal Functions Difficult

Stress was reported as one of the biggest sleep loss factors – again, a likely outcome but one with a surprising impact.  Of survey respondents who reported sleep problems of at least mild severity, 89% of women and 84% of men said their sleeping problems are caused by stress or anxiety.  And those with stress-induced sleeping problems reported that it had a significant impact on their ability to work.  (Click here for the data.)

PatientsLikeMe Study: Stress And Lack of Sleep Significantly Affect People With Health Conditions
PatientsLikeMe Study: Stress And Lack of Sleep Significantly Affect People With Health Conditions

The study aimed to measure sleep quality against the holistic backdrop of a patient’s life environment, such as work and living conditions. Going forward, PatientsLikeMe also plans to look more closely at data relating insomnia to chronic fatigue, depression, pain, and diet, and to delve into nuances such as a patient’s feelings of empowerment and how it may relate to his or her symptoms.

“These are important variables about how people live with disease,” Heywood says.  “Every one of these is a complicated sub-domain where understanding the compounding factors and context is extremely important. For us to move into this next generation of personalized medicine, we first have to understand mathematically what the human condition is.”

PatientsLikeMe also launched the Open Research Exchange this summer, an online platform to help researchers design, test and share new ways to measure diseases and health issues, and to open the research process to patient input, including developing and critiquing questions.

A traditional research model with a principal investigator collecting subjects and restricting access leads to conditions without good outcome measures, particularly those for rare diseases, Heywood says. Instead, Open Research Exchange uses crowd-sourcing concepts to help researchers develop new health outcome measures and more fully understand diseases in a patient-centered way.

“Look at the BECK Depression Inventory – that was developed in just over a week.  The idea that our whole understanding of depression is based on something that was developed in a week without patient input, and hasn’t evolved since, is just wrong. We have patients tell us all the time how to make our scales better, and now we’re going to give them the ability to do it,” Heywood says.

Jamie Heywood will be a participant at this week’s live online Google+ Hangout, discussing the causes and effects of sleep deprivation. It’s tomorrow at 2PM Eastern. Click here for more information and to register.

A Live Online Event: The extended effects of sleep deprivation

The more we know about the physiological effects of sleep deprivation, the less we seem to know about its prevalence, diagnosis and effects on our well being.
The online network PatientsLikeMe recently conducted a survey of more than 5,200 members — people with life-changing health conditions — about sleep, which revealed that most respondents think they have a sleep problem, and have suffered for a year or more.
Graphic courtesy of PatientsLikeMe
Graphic courtesy of PatientsLikeMe

In fact, a quarter of those said that they rarely get a good night’s sleep. Yet only a small percentage had actually been diagnosed with insomnia. The effects of sleep deprivation, meanwhile, affected their emotional well-being and relationships, and led to dangerous behavior when driving.

Why would sleep loss in what would seem to be an obviously affected population — the chronically ill — go under-diagnosed, and how much do their conditions affect their sleep, and vice versa? What factors are to blame for their sleep loss, and how can we better quantify and treat an issue with such complex causes?  Join our live online conversation this Thursday at 2pm ET to discuss the issue and to hear more surprising results from the PatlientsLikeMe survey.  Plus:  We’ll cover the latest research in lifestyle interventions that may help with sleep disorders and circadian rhythm disruptions.

Our special guest is James Heywood, PatientsLikeMe’s co-founder and director, and TEDMED 2009 speaker.

Why American workplaces are waking up to the importance of sleep

By Arianna Huffington

People in every age think they’re living in a time of transition (I’m sure Adam turned to Eve and said, “Darling, I think we’re living in a time of transition”), but some ages really do usher in broad and deep change. Right now in American workplaces, I believe we’re experiencing a transition with regard to well-being. An increasing number of employers and employees alike are acknowledging that the current model of success isn’t working, and is in fact leading to burnout, stress, decreased productivity, and — an epidemic with especially personal resonance to me — sleep-deprivation.

Often, when I speak in public, my first mention of sleep elicits a bit of a laugh. But it’s a knowing one, because all of us recognize on some level how sleep underpins our ability to function. And how does it in turn affect our organizations? Let me count the ways. Fatigue is the enemy of creativity and memory. It costs American businesses $63 billion a year in lost productivity. One study found that, because of its effects on decision-making and cognitive function, sleep-deprivation opens the door to unethical behavior. Another study found that sleep-deprivation is noticeably reflected in facial cues, enough so that other people are likely to register a sleep-deprived person as lacking energy and unhealthy. (Not the best face to put forward to a customer.) The worst costs arise from the fact that sleep deprivation causes safety lapses and contributes to other health issues. (For instance, the World Health Organization classifies shift work as a Class 2A carcinogen, due to the rates of breast cancer among women shift workers.)


Fortunately, many employers, in every industry imaginable, are learning to appreciate that the health of employees is directly connected to the health of the bottom line, and making concrete changes. At the Harvard Medical School Division of Sleep Medicine’s Corporate Leadership Summit last month, Attacking the Sleep Conspiracy, companies like Walmart, Procter & Gamble, and Eli Lilly came together to discuss how businesses can partner with sleep experts and organizations to meet the health challenges associated with sleep problems.

Perhaps they are taking a cue from the world of sports. Olympians now get state-of-the-art nap rooms in addition to their highly monitored diets. In the NBA, stars like Steve Nash and Kobe Bryant have led the way, making pre-game naps part of their warm-up routine. Now, the NBA’s deputy commissioner says, “Everyone in the league office knows not to call players at 3 pm. It’s the player nap.”

More conventional workplaces are catching up. Twenty-five percent of large U.S. businesses offer employees some kind of stress reduction initiative, like meditation or yoga. At The Huffington Post’s office in New York, we’ve installed two nap rooms. At the beginning, our reporters, editors, and engineers were reluctant to use them, afraid that people might think they were shirking their duties. But it’s a sign of our time of transition that, these days, our nap rooms are always booked. We have to change workplace culture so that what’s stigmatized is not napping but walking around drained and exhausted.

As we approach a critical mass of awareness of the importance of sleep, we’re also learning that some of our most admired historical figures have been in on the secret for a long time. So along the way to taking on the biggest challenges and seizing the greatest opportunities, let’s hope the next generation of leaders will note the performance advantage enjoyed by some of history’s famous nappers — from Leonardo DaVinci to Winston Churchill to John F. Kennedy.

Times of major transition are often precipitated by “perfect storms” combining powerful forces. Behind American’s growing concern with well-being are at least three elements: a dysfunctional health care system, an abundance of new technology, and a new ability and desire to monitor and take control of one’s own health. As this perfect storm hits the American workplace, and the movement responding to it takes hold, expect great change to happen.

Arianna Huffington is the chair, president, and editor-in-chief of the Huffington Post Media Group, a nationally syndicated columnist, and author of thirteen books. She is a member of The Executive Council of the Division of Sleep Medicine at Harvard Medical School.

This post is reprinted with permission from The Harvard Business Review Blog Network.

What else can employers and communities do to address the causes of sleep deprivation?  Share your thoughts on this Great Challenge.


Examined Lives: A firefighter lives dangerously – while sleeping

By Thomas Zotti

With hindsight, it’s easy to see the roots of my sleep issues.

After college (almost 30 years ago now…yikes!) I found a part-time job in my chosen field of radio, which required working a 2am-10am shift. It was located about an hour’s ride from my parents’ home, where I lived. I did that for a few months (and worked another part-time gig as well) before being offered a full-time position at the same station. This involved a 6pm-2am shift. I took it and commuted for a few months until I found an apartment nearby.

About nine months later I was promoted (?) to the 2am-10am weekday shift. Although the commute was down to about 15 minutes, the shift wreaked havoc on my circadian rhythms. But I was young and managed to adjust. I also tried to keep a fairly normal schedule on weekends.

I also developed the ability to fall asleep at any time and in any place. It was under control…I never felt like I would fall asleep without intending to do so. Just chalked it up to the crazy work schedule.

Eventually I moved on to another radio station. This time it started with a mid-morning-to evening shift with an occasional meeting to cover at night. Much more in line with the rest of the world. Later, I was given the morning host/anchor duties, which meant getting up at 3:30am to get to work, and working until 1:15pm or so most days. Back to falling asleep any time, any place.

Thomas Zotti on the job.

Fast forward to 1996 and a career change. I was hired as a full-time firefighter in my town. This involved working a 24-hour shift twice per week. Obviously, that included some downtime at the station, but I was required to respond to emergencies at all times of the day and night. While off duty, I could also respond as needed…often in the middle of the night. Everyone likes overtime, right?

However, my wife started to comment on my snoring. I didn’t think too much about it, and it was not much of an issue. With being away two nights a week (more if covering an open shift) it never seemed like anything to worry about. Later, a promotion resulted in changing to a day shift and being home every night. It took about a year to feel normal after the change. The comments about the snoring became more frequent.

Then, during a routine physical, my primary care provider (PCP) asked if there was any reason to think I had sleep apnea. I remember being somewhat surprised by the question. I knew apnea involved not breathing for a period of time, and my wife had not said anything like that. I had no reason to think that was the case. So I said no.

Time went by and the talk about snoring became more frequent. At the same time I began to find myself awake at various points during the night. No rhyme or reason to it…just would suddenly be awake. Very infrequently, I would awaken to a feeling of claustrophobia. The feeling would dissipate almost immediately, especially if I got up to use the bathroom. I had never been claustrophobic before, and as a firefighter we routinely do claustrophobia-inducing things, so it had never been an issue. I attributed it to stress and didn’t think a lot about it. Besides, it didn’t happen very often.

Other times I would awaken in the morning with a low-grade headache. More stress? It would go away after 10 minutes or so. My exercise program had taken a bit of a hit as I had little energy in the mornings, but I managed to muddle through. But I could always chalk it up to something else…the fire pager went off twice last night, the cat sat on my chest, etc.

Then my wife started saying I sounded like I was choking at night…and more than once she ended up on the couch because of the noise.

I had little energy in the morning, but after two cups of coffee (big ones!) I would get through the day. But I was getting regular exercise and an annual physical, which typically ended with the doc and/or technicians commenting on how healthy I was.

I’m not sure exactly what made the lightbulb come on last fall. I had the sudden realization that somehow this was all related. After finally putting two and two together, I went to see my PCP, and he agreed. I left with a referral to a sleep clinic.

The clinic was an experience. It’s set up like a small private hotel room. On arrival the technician reviewed the plan and set me up. About 18 electrodes were attached to my head. Two straps around my chest to measure breathing. Electrodes on my legs. A camera on the wall to record my movements. Finger probes. Then the instructions…go to sleep. We’ll wake you if there’s a problem. Easy for you to say, pal.

I slept…at least a bit. Seemed like it took forever to fall asleep while hooked up to all that stuff. In the morning I asked the technician who had to unhook all of it if he saw anything to be concerned about. His response: “I can’t tell you anything official…but you’ll be back for your CPAP (continuous positive airway pressure) machine.” Probably should have seen that coming.

As expected, the sleep clinic diagnosed moderate sleep apnea. By that time I was resigned to it and had done a bit of research on line. The total freak-out came in the fine print of the sleep study report. As a firefighter/EMT, I have some familiarity with vital signs. Oxygen saturation (O2 sat) is a measure of the relative amount of oxygen attached to the hemoglobin in one’s bloodstream. Perfect is 100%.  Most non-smokers have an O2 sat of 96-99%. Smokers and people with respiratory disease may run 90-95%. My sleep study report said my O2 sat had dropped to 81% at one point. In the field, if we have a patient with an O2 sat of 81% we start calling for medflight helicopters. I guess that explains the headaches.

I was prescribed a CPAP machine, which I now use nightly. It forces air into the airway under enough pressure to overcome any obstructions like overly relaxed muscles (the sound of breath passing relaxed airway muscles is snoring). I’m still getting used to sleeping with a mask on my face, but it seems to help tremendously. I have had a noticeable improvement in alertness. Although it often takes many weeks of treatment to “rebuild” a broken sleep cycle, I am very encouraged by fewer aches and pains, more energy during workouts, and that urge to nap after lunch is just about gone. My energy level seems much more steady throughout the day.

I also feel my job performance is improving as my mental acuity improves. Again, it’s one of those things that sneaks up over time and you didn’t realize it’s a problem until it’s being fixed. Having said that, I am extremely grateful that I have not been responsible for getting one of my firefighters hurt or worse while my brain was fogged up. My wife says there is no more snoring and choking. The only issue…since the mask is vented, if I turn on my side facing her she gets a wind chill. It’s been two weeks on CPAP, and I follow up with the sleep clinic next week.

Only now that it’s being treated am I realizing how big an impact my sleep problem had on my health. It seems as it creeps up on you, you slowly adjust to feeling tired all the time. It becomes the norm. I had pretty much chalked it up to aging. Having long had the ability to fall asleep any time, it took quite a while to realize that what was happening was actually a sleep problem. With sleep apnea, it’s not that you can’t sleep at all; it’s that you never quite get to the most restful phase of sleep. Before last fall, if you had asked me how I slept at night I would have said “like a baby” and believed it.

As I mentioned, I run and go to the gym regularly, which I can only assume probably kept the worst of the symptoms at bay for longer than otherwise. Like most people, I could stand to lose a few pounds, but it appears in my case sleep apnea is mainly a heredity issue.

Please don’t feel badly for me…there are plenty of people with much more serious problems than mine. But if any of this hits home with you, get it checked. Today.

Read more here about the Great Challenge of sleep deprivation, and join our live online event Thursday at 3:30 pm ET to discuss it and ask questions of leaders in the field.