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Studies reveal how MS patients in America experience and define “good” health care

Two recent PatientsLikeMe studies have shed new light on the patient experience with health care in America and show that while opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that constitute “good” care.

Results from a six-question online poll, conducted in February 2018 among 2,559 PatientsLikeMe members, show that patients with certain conditions, especially those living with fibromyalgia, post-traumatic stress disorder (PTSD) and major depressive disorder (MDD), are the least satisfied with their provider or care, while those with ALS, multiple sclerosis (MS) and Parkinson’s disease are among the most satisfied.

In a corresponding primary study, conducted with support from the Robert Wood Johnson Foundation and completed late last year, PatientsLikeMe surveyed a diverse group of 1,200 patients and health stakeholders to understand how they fundamentally defined good care, with the ultimate aim to influence ways in which provider effectiveness is measured. The primary study’s findings also generated a simple checklist for evaluating care and provider performance.

“Patients are the ultimate arbiters of health care quality because they live with their symptoms, treatments, and daily struggles all day, every day,” said PatientsLikeMe’s Vice President of Policy and Ethics Sally Okun. “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.”

Key findings among all poll respondents highlight contrasting care experiences based on condition. The results suggest that patients with certain conditions, especially those living with fibromyalgia, PTSD and MDD, are less likely to believe their provider has fully explained treatment options, compared to 63% of patients living with ALS, MS and Parkinson’s disease who felt their provider had fully explained options available to them.

When it comes to receiving the best possible health care for their condition, 61% of MS patients said they felt they were. Only 36% of MS patients were reported to have stayed with their providers even if they felt they weren’t getting the best possible health care.

“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 centres of excellence while those living with other conditions do not,” Okun said. “This makes it even more important that patients advocate on their own behalf to ensure all avenues to get good care are being used.”

Source: MS-UK 29/03/18

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