5 posts tagged “sleep problems”

Stress and sleep- PatientsLikeMe co-founder Jamie Heywood’s interview on the TEDMED blog

Posted November 6th, 2013 by


Our co-founder Jamie Heywood was just interviewed for the TEDMED blog. Check it out! He talks more about the recent PatientsLikeMe sleep survey and some new results that show how stress can impact our sleeping habits.




Here’s what’s posted up on the TEDMED blog…

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.

“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.)

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.

Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey

Posted September 23rd, 2013 by

Majority of Members Have Chronic Sleep Problems That Point to Insomnia, But They Aren’t Diagnosed With The Condition


CAMBRIDGE, Mass.— September 23, 2013—Results from a new survey of 5,256 PatientsLikeMe members around the world reveal nearly one-third of respondents—people who live day to day with life-changing conditions—never (5%) or rarely (25%) get a good night’s sleep. Nearly half (44%) wake up a lot during the night every night, or almost every night. The survey also found that sleep problems for the group are chronic, with more than half (53%) saying their sleep problems have lasted for more than a year. Here are the survey results and graphics.

“It’s challenging enough to live with a condition that affects your day-to-day life, but now on top of that we’ve uncovered a hidden burden that has a major impact on patients’ well being,” said PatientsLikeMe Research and Development Director Paul Wicks, Ph.D. “It’s vital that patients and doctors understand how lack of sleep may affect other illnesses.”

The survey offers a rare glimpse into the sleep experiences of patients with chronic illnesses and is part of a broader study of sleep issues that PatientsLikeMe has conducted over the last five years. PatientsLikeMe has now amassed one of the largest collections of patient-specific sleep data in the world representing the experiences of 65,000 patients. Half of these patients reported having moderate to severe insomnia, which prompted the survey to deepen understanding of the relationship between sleep and other illnesses. PatientsLikeMe is continuing to analyze the complete dataset and plans other work to study how insomnia relates to specific diseases and conditions. The company expects to publish the complete findings in the future, but the survey results released today show that lack of sleep affects patients far more than the general population.

Sleep Problems vs. Insomnia
The National Sleep Foundation (NSF) says insomnia is characterized by four primary symptoms, including waking up feeling unrefreshed, difficulty falling asleep, waking in the middle of the night, or waking too early. The NSF says a person is at risk of having insomnia if they experience one or more of these symptoms on a regular basis, and if the symptoms impact their daily functioning “a lot” or “extremely.”

Only a small percentage (13%) of the PatientsLikeMe respondents said they have been diagnosed with insomnia. However, among the undiagnosed respondents (n = 4,048), 73% reported they had the symptoms that indicated they are at risk of having insomnia.

Sleep in the U.S.
In a 2005 study of adult sleep habits and styles, the NSF surveyed 1,506 people in the U.S. about their experiences with the four symptoms of insomnia. Based on the NSF definition, results from PatientsLikeMe survey respondents in the U.S. (n=3,284) show that members are almost nine times more likely to be at risk of having insomnia than the general adult population. They also show that PatientsLikeMe members with health conditions experience any one of the four symptoms of insomnia at twice the rate of the general adult population.

Sleep Affects it All: Driving, Relationships and Sex
As part of a series of questions on the impact of sleep on their emotional, physical and social well-being, respondents answered questions about topics such as driving, relationships and sex.

In the survey, people who reported at least a mild sleep problem (n=3,975) were asked how it affects their driving. Of the 81% who drive, 36% have felt drowsy either sometimes, often (10%) or very often (7%) while driving; approximately one out of three (31%) admitted to nodding off or falling asleep at least once while driving because of their sleep problem.

Regarding relationships, 61% of respondents who experience sleep problems said their workmates, family or friends would describe them as “a bit” or “super” irritable; 21% say they’d be perceived as “irritable as usual.”

When the questions got more intimate, two thirds of the respondents with at least mild sleep problems answered how lack of sleep affects their sex life. Of those, one third (32%) said their sex life is negatively affected by their sleep problems, while 27% said it’s the same. Just 17 people, or 0.43%, reported an improvement. The rest answered not applicable, or didn’t want to say.

Survey Methodology
Between July 15 and 30, 2013, PatientsLikeMe invited recently active members to participate in the PatientsLikeMe® survey; 5,256 members worldwide completed the entire survey. The mean age of respondents was 51 years (SD: 13); the age range was 18-87; the margin of error was 0.3 year(s); one survey respondent did not provide age. The survey represents a summary of the current insomnia experience as shared by patients with chronic illness.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 35 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


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