Patients with fibromyalgia, post-traumatic stress disorder (PTSD), and major depressive disorder (MDD) are the least satisfied with their healthcare, while people with ALS (amyotrophic lateral sclerosis), multiple sclerosis (MS), and Parkinson’s disease are the most satisfied, according to results from a poll.
The six-question survey included 2,559 participants. It was conducted by the website PatientsLikeMe, a personalized health network that provides real-world disease information, helps outline new options for treatments, connects with other patients, and takes action to improve their outcomes.
A key finding was that only 47% of patients with fibromyalgia and PTSD, and 53% of patients with MDD, said their healthcare provider had fully explained the treatment options available to them. Compare this to the 63% of patients with ALS, MS, and Parkinson’s disease.
Also, only 40% of fibromyalgia patients responded that they believe they were receiving the best possible healthcare for their disease. This is similar to patients with PTSD (49%) and MDD (45%). But these numbers are much lower compared to those with ALS (66%), MS (61%), and Parkinson’s disease (57%).
Interestingly, 56% of patients with fibromyalgia and MDD, and 53% of PTSD patients choose to stay with their healthcare provider, despite believing they are not receiving the best care or most effective treatment. But only 31% of ALS patients, and 36% of MS and Parkinson’s patients stay with their provider if they believe they are not receiving the best care.
In another study, researchers recruited a group of members from PatientsLikeMe — patients from a community clinic in Baltimore, as well as other related healthcare professionals. The goal of the study was to determine the core principles that are necessary for good healthcare.
As part of the process, participants were asked to describe what good healthcare looks like and developed 10 major concepts. These concepts then evolved into 10 questions that can be asked to determine whether patients are receiving appropriate healthcare.
“Patients are the ultimate arbiters of healthcare quality because they live with their symptoms, treatments, and daily struggles all day, every day,” Sally Okun, PatientsLikeMe vice president of policy and ethics, said in a press release.
“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,” she said.