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.