11 posts tagged “effectiveness”

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

Posted 7 months ago 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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MS research: What’s the latest?

Posted 8 months ago by

Keeping tabs on the latest MS research isn’t always easy. So, our team of in-house health professionals took a closer look into some of the treatments in the research pipeline for people living with MS. Most of these treatments are in the final phase of clinical development — phase III clinical trials. In this phase, researchers compare the safety and effectiveness of the new treatment against the current standard treatment.

Check out the roundup:

  1. Ozanimod – An oral treatment in phase III clinical trials with the potential to reduce relapses and prevent neurological damage. Ozanimod is reported to work like Gilenya (fingolimod) but with some potential for fewer side effects. A new drug application for ozanimod was submitted to the FDA in December 2017. This application is seeking approval for the use of this agent to treat relapsing multiple sclerosis. It is possible that an FDA decision could be made on this application in the second half of 2018.
  2. Ponesimod – An oral treatment in phase III clinical trials that prevents immune cells from damaging myelin that insulates nerve-cells in patients with MS. A new drug application for Ponesimod is possible within the next couple of years.
  3. Siponimod – Similar to Ozanimod, Siponimod is an oral treatment in phase III clinical trials that may reduce risk of relapse and disease progression. With a new drug application in the next year or two, the treatment has the potential for approval and launch 6-12 months later.
  4. ALKS 8700 – This oral treatment (currently in phase III clinical trials) is a slightly different formulation of Tecfidera (dimethyl fumarate) but, according to Alkermes, has fewer gastrointestinal side effects. With a new drug application in 2018, the treatment could be available 6-12 months later.

In other treatment news:

Laquinimod – You might recognize the name because initially, it showed some promise. More recently it’s performed poorly in clinical trials. Laquinimod is still being developed but in Phase II studies (vs. Phase III which is the final phase of clinical development), which could mean it’s at least a couple years away.

Looking for more info on research and treatments? Join the community today to learn more and connect with more than 60,000 members living with MS.

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