Patients with certain conditions, particularly those with fibromyalgia, post-traumatic stress disorder and major depressive disorder, are least satisfied with their provider or care, while those with Lou Gehrig's disease, multiple sclerosis and Parkinson's disease are among the most satisfied, according to a poll from the patient network and research platform PatientsLikeMe.
To determine how opinions about care and provider performance varied across patient groups, PatientsLikeMe gathered data from 2,559 of its members in a six-question online poll administered in February. Overall, poll respondents indicated differing care experiences based on their condition.
Here are four findings from the poll.
1. Only 47 percent of fibromyalgia and PTSD patients and 53 percent of MDD patients believe their provider has fully explained treatment options, compared to 63 percent of patients living with ALS, MS and Parkinson's disease.
2. Only 40 percent of fibromyalgia patients, 49 percent of PTSD patients and 45 percent of MDD patients think they are getting the best possible care for their condition, compared to 66 percent of ALS patients, 61 percent of MS patients and 57 percent of Parkinson's disease patients.
3. More than half — 53 percent of PTSD and 56 percent of both MDD and fibromyalgia patients — have stayed with their providers despite thinking they are not receiving the best care or treatment, compared to only 31 percent of ALS patients and 36 percent of MS and Parkinson's patients.
4. "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," PatientsLikeMe's Vice President of Policy and Ethics Sally Okun, RN, 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."
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