MS Patients Are Among the Most Satisfied with Their Healthcare, Surveys Show

MS Patients Are Among the Most Satisfied with Their Healthcare, Surveys Show

Multiple sclerosis patients are among those with debilitating diseases who are most satisfied with their healthcare, two surveys indicate.

Others who are satisfied include people with amyotrophic lateral sclerosis and Parkinson’s, according to the questionnaire-based PatientsLikeMe research.

In contrast, people with fibromyalgia, post-traumatic stress disorder (PTSD) and major depressive disorder (MDD) are the least satisfied with their care, the surveys showed.

PatientsLikeMe describes itself as the world’s largest personalized healthcare network. It was created to help people find new treatment options, connect with others with the same disease, and encourage patients to take action to improve their outcomes.

It uses a broad portfolio of pharmaceutical companies and a range of government organizations to help establish bridges between patients, research, public policy and therapy development.

PatientsLikeMe studies, conducted with support from the Robert Wood Johnson Foundation, are based on the results of a six-question online survey. Those surveyed include patients, doctors and researchers. The goal is to understand how they define good care and to improve how provider effectiveness is measured.

A total of 2,559 patients completed the poll between February 21-23, 2018. Twelve percent had MS, 9% fibromyalgia, 8% Parkinson’s, 7% MDD, 4% ALS, 4% bipolar disorder, 4% lupus, 3% rheumatoid arthritis, 3% PTSD, and 3% type 2 diabetes. Other conditions were represented as well. The mean age of the patients was 56.7 years.

The poll showed that patients with different conditions had different views of the quality of their care.

Regardless of their condition, most agreed on what constituted good care.

The studies showed that 64 percent of patients with MS, ALS or Parkinson’s were more likely to believe their healthcare provider had fully explained their treatment options, versus less than half of patients with fibromyalgia, PTSD and MDD.

Most MS, ALS and Parkinson’s patients also believed they were receiving the best possible care for their condition. They were also more likely to change providers if they thought they were not receiving good care, compared wtih fibromyalgia, PTSD and MDD patients.

“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,” Sally Okun, PatientsLikeMe’s vice president of policy and ethics, said in a press release.

“This makes it even more important that patients advocate on their own behalf to ensure all avenues to get good care are being used,” Okun added.

The studies led to PatientsLikeMe creating a 10-item checklist that patients can use to evaluate their care.

A key item on the checklist is patients playing an active role in their care. Other items deal with treatment selection, effective care delivery, patient outcomes, doctor/provider competence, individualized care, collaborative care, effective communication, care accessibility and cost, and healthcare office management.

“Patients are the ultimate arbiters of healthcare quality because they live with their symptoms, treatments, and daily struggles all day, every day,” Okun said. “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.”

PatientsLikeMe is offering a video recap of the study, and how patients can evaluate the quality of their care, at this link.

13 comments

    • S swanson says:

      To Jill and Reny

      Many other diseases mimic MS and many tests have to be done over a period of time to accurately diagnose MS.
      There is a saying that if you put 100 pts with MS in the same room, you would have 100 different symptoms.
      We wish it were simpler, I was years getting a diagnosis and my relapses were so far apart, they didn’t fall in the same slots. It was only after they got more frequent that I went searching and even then, it took 4 tries to find a neuro who could diagnose me. Then I was able to get meds to help subdue my relapses. I actually retired before getting my diagnosis because I kept falling and my cognitive skills were getting worse. Being in the health care field, I didn’t want to put pts in harms way.
      Then the search began and tests started to rule out one mimic after another.
      I hope this helped explain it, but I still have my non-BFF MS and always will

    • Agnes Weessies says:

      Because it is diagnosed via exclusion. Everything else has to be explored first before insurance companies will allow the lumbar puncture, and MRI with contrast to be done. The results and a history of symptoms over a long period of time are what is used to give the difinitive diagnosis. Those 2 tests are critical and without them there is no diagnosis. Fight for the tests! Don’t let your life dissolve! Halt the progress as much as you can with treatment.

  1. C Parker says:

    Wow…they must not have included me in that survey. I have had the worst time of it with neurologists and MS, in the US. I have never had a neurologist who even wants me as a patient, as I am not on any of the DMTs. I suspect I might get better treatment from neurologists in Europe or Canada.

  2. Christopher Paris says:

    My healthcare provider by my most remarkable neurologist, her office, and staff are remarkably commendable, honorable, attendant, and persistently compassionate. Healthcare provided by mega-pharma and their insurance provider cohorts are a Dr. Death-threatening persistent profanity. Just watch: when the stem-cell therapy, possible cure is perfected, those devils will, once again, make it prohibitive and almost impossible by cost. Hell must be empty because it seems all the devils are here.

  3. Agnes Weessies says:

    As the primary care giver of my adult son with advanced RRMS, once we got to the Neurologist and then faught to get the treatments started, we both have no problems with the Dr’s or the treatment.

    Its the federal beuracracy and the insurance fiasco that poses as health care that we are tremendously angry about. IT’S MEDICAL TERRORISM!!!!!

    Its sad that you have to continually fight to keep getting to see the drs and receive treatment.

    If the dr’s along the way had done the two tests needed for a diagnosis my son would not be an invalid today. The system is geared to keep from getting diagnosed unless you are a celebrity or pay out of pocket for the tests. Even with insurance you are passed of as lazy, clumsey and need glasses. Shame on the system, and shame on this survey of just 6 questions. Easy to paint whatever picture you want when you write survey questions. Stats can tell lies!

  4. Karol T. Holloway says:

    I am doing fine with my healthcare when I am at their office. I have trouble with my living conditions. I am unemployed, retired RN, do not drive, live on my mothers property, live in her travel trailer with my dog, struggle with depression, my husband divorced me after nearly 40 years marriage so he could marry his girlfriend. I attempted suicide and still wonder if I could be more successful in the future. My only child left with him. My parents paid for her college education. That was very important to me. She is now an RN. My father drives 1.5 hours every week to be with me. He takes me to my doctors appointments 2 hours away, MRIs, etc… I am not pleased with my living condition: sometimes I have no working toilet, the water smells like raw sewage, my mother put gravel outside of the trailer that is extremely difficult and making it dangerous to walk. If I bring anything to her attention she does her martyr act. My daughter visits my mother often but has no time for me. I have made attempts to reconcile with my daughter but I am getting tired of the rejection.I was seeing a therapist 30minutes away but since I do not drive, that has been cancelled. I handle my MS flares by myself and hope that will continue.

  5. Kevin Keplinger says:

    I find this to be a rather sad statement since probably 90% or more of all MS patients have never heard of the most effective treatment that there is for MS which is of course HSCT.

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