6 posts tagged “survey”

What do you know about getting enough sleep?

Posted March 2nd, 2015 by

That’s what the National Sleep Foundation (NSF) is asking during Sleep Awareness Week to help everyone better understand why sleep matters. And what you know probably depends on your own experiences. Are you living with insomnia or a chronic condition that impacts your sleep? Or do you just have a restless night every once in a while?

Back in 2013, more than 5,000 PatientsLikeMe members participated in a survey about their sleeping habits, and we shared what the community helped to uncover (get it!?) in a series of infographics on the blog. Nearly a third of respondents never (5%) or rarely (25%) got a good night’s sleep, and almost half (44%) frequently woke up during the night. Poor sleep is the norm for people living with life-changing health conditions, and it affects everything from driving to relationships and sex – view the infographics here.

To help launch Sleep Awareness Week, the NSF released their “Sleep in America” poll results today, including the 2015 Sleep and Pain survey, which looked to find if stress and poor health were related to shorter sleep durations and lower quality sleep. The poll found that:

  • Greater stress was associated with less sleep and worse sleep quality
  • Pain was related to greater sleep debt – the gap between how much people say they need and the amount they’re actually getting1

For everyone living with these sleep issues, you can help raise awareness this week on social media through the #SleepWeek hashtag. And if you’d like to share any PatientsLikeMe infographics or results, please use the #areyousleeping hashtag.

If you’ve been struggling with sleep, read what PatientsLikeMe members Lori (living with idiopathic pulmonary fibrosis) and Marcia (living with multiple sclerosis) had to say about their insomnia. And don’t forget to reach out to the community in the Sleep Issues forum on PatientsLikeMe – over 40,000 members are sharing about everything related to their sleep.

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1 http://sleepfoundation.org/sleep-polls-data/2015-sleep-and-pain


Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

Posted February 26th, 2015 by

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire.

In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth Wood from the University of Cambridge to understand a symptom called an extracampine hallucination, which is the sense of a presence beside or behind you even when there’s nothing or nobody there. So, unlike visual hallucinations, the presence can only be sensed or felt, not seen.

Everything the community shared will help researchers develop a new tool to better measure this type of hallucination and alert doctors and care teams to ask about this symptom earlier rather than later. Read the results here.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

Share this post on Twitter and help spread the word for Parkinson’s disease.