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