32 posts in the category “Depression”

Health news: What’s making headlines this month

Posted May 8th, 2018 by

Let’s stay on top of the latest health news — in case you missed it, check out this round up of some of the stories making headlines in May.

ALS
  • May is ALS awareness month: Later this month, advocates from across the U.S. will head to Capitol Hill to meet with their legislators. Check out how you can get involved and join the fight against ALS.
  • Congress passes $3 billion increase in NIH funding: $140 million of the increase will go to the BRAIN Initiative research projects that contribute to the knowledge and understanding of ALS. More info.
Lupus
  • May is Lupus Awareness Month: Nearly two-thirds of people know little or nothing about lupus beyond the name, according to the Lupus Foundation of America, which is promoting the “Go Purple” campaign. Get ideas for boosting awareness.

  • A link between the “mono” virus and lupus? A new study published in Nature Genetics shows that the Epstein-Barr virus (EBV) — known for causing mononucleosis — may increase the risk of lupus and six other autoimmune diseases by changing how some genes are expressed. Check it out.
Parkinson’s Disease
  • “Suspect” Parkinson’s drug faces scrutiny: Following reports of hundreds of deaths and adverse events, the FDA is re-examining the safety of Nuplazid (pimavanserin), which was approved in 2016 for treating hallucinations and delusions associated with PD. Read more.
Lung cancer
  • Emerging treatments for small-cell lung cancer (SCLC): Immunotherapy and other emerging drugs called PARP inhibitors and Rova-T(Rovalpituzumab tesirine) are among a group of new therapies showing “early promise” in clinical trials for the treatment of patients with SCLC. Hear from one patient.
MS
  • Life after a stem cell transplant: The BBC’s Caroline Wyatt had a stem cell transplant in Mexico to reboot her immune system. A year later, she shares how she’s doing. Read Caroline’s story.
  • New drug for secondary progressive MS: Phase 3 clinical trial results show that a new drug could slow down the progression of symptoms for people living with secondary progressive MS. Get the scoop.
Mental health
  • Ever heard of forest bathing? Research from the Nippon Medical School in Tokyo found that just standing in the woods could reduce depression scores and improve immune function. They also found some surprising benefits of dirt… Get the full story.
  • Looking closer at medical marijuana strains and doses: A new study draws from user-reported data on marijuana smoking habits to understand the effect of weed on depression and anxiety. From different strains to number of “puffs,” see what was uncovered.
  • Combining treatments for better results: Researchers at the University of Texas found they could boost the positive effects of cognitive processing therapy (CPT) by adding transcranial magnetic stimulation. More info.

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Defining “good” health care: 2 new studies reveal patient perspectives

Posted March 28th, 2018 by

Do you feel you’re getting the best possible care from your doctor? In two recent studies, PatientsLikeMe members answered this question and shared their perspectives on the health care they’re receiving. The results show that while patient opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that define “good” care. Here’s the full scoop…

Poll results: Good care is harder to get for some conditions

Last month, 2,559 PatientsLikeMe members took part in a 6-question poll about doctor-patient relationship and what it means to get “good care.”

The results suggest that patients with certain conditions, especially those living with fibromyalgia, PTSD and MDD, are less satisfied with their care.

The poll also found that patients with these conditions are less likely to:

  • Believe their provider has fully explained treatment options. Just 47% of fibromyalgia and PTSD patients and 53% of MDD patients agree their provider has done so, compared to 63% of patients living with ALS, MS and Parkinson’s disease.

  • Report that they are receiving the best possible health care for their condition. Only 40% of fibromyalgia patients, 49% of PTSD patients and 45% of MDD patients believe they are receiving the best possible care, vs. 66% of ALS patients, 61% of MS patients, and 57% of Parkinson’s disease patients.

  • Change providers even though they think they are not receiving the best care or effective treatment. More than half of these patients (53% of PTSD and 56% of MDD and fibromyalgia patients) have stayed with a provider in this situation vs. just 31% of ALS patients and 36% of MS and Parkinson’s patients.
Why is this the case?

“A positive or negative experience with care could be provider-related, but also related to the fact that patients living with ALS, MS and Parkinson’s often have access to condition-specific specialists or centers of excellence while those living with other conditions do not,” said Sally Okun, PatientsLikeMe’s VP of Policy and Ethics. “This makes it even more important that patients advocate on their own behalf to ensure all avenues to get good care are being used.”

See the full poll results at news.patientslikeme.com.

The patient definition of “good care”

Prior to the poll, more than 200 people (including PatientsLikeMe members, clinicians, researchers and more) shared how they define good health care and what matters most to them, from taking an active role in their care to accessibility and cost. PatientsLikeMe researcher Emil says, “Now more than ever we need to pay attention to that patient role.” In this video, he breaks down the key study takeaways:

 

Are you getting the best possible care? 10 Ways to tell

Based on what the study uncovered, we turned the 10 major factors that define good health care into a check list. Speaking about the poll and the survey, Sally Okun says, “These complementary studies give a snapshot of what is most important to patients, and give patients the tools to find providers willing to meet the characteristics of good care.”

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