PatientsLikeMe Surveys Lead to Quality-care Checklist

Two PatientsLikeMe studies have led to a checklist designed to help those with Parkinson’s and other debilitative diseaes find providers who can meet criteria for delivering good care.

The questionnaire-based research also showed that patients with amyotrophic lateral sclerosis, multiple sclerosis and Parkinson’s are among those who are more satisfied with their care. In contrast, those with fibromyalgia, PTSD, and major depressive disorder (MDD) are among the least satisfied.

Quality healthcare services are important to the outcomes of people with debilitative diseases. But finding a team that can provides the right treatment and support can be a challenge.

PatientsLikeMe describes itself as a patient network and real-time research platform. Through the network, patients connect with others who have their disease and track and share their experiences with the goal of improving outcomes. In the process, they generate information about their disorder.

To understand patients’ experience with care, researchers conducted a six-question online survey among 2,559 people, with the support of the Robert Wood Johnson Foundation. The team asked patients, doctors and researchers how they defined good care and to offer suggestions about measuring provider effectiveness.

About 63% of patients with ALS, MS and Parkinson’s said they believed their care provider had fully explained their treatment options. Only half or less of fibromyalgia, PTSD, and MDD patients felt the same way.

When asked if their care was the best possible, 66% of ALS patients, 61% of MS patients, and 57% of Parkinson’s patients said yes. The figures were 40% for fibromyalgia patients, 49% for PTSD patients, and 45% for 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, vice president of policy and ethics at PatientsLikeMe, 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.”

Despite many fibromyalgia, PTSD, and MDD patients being skeptical about the quality of their care, more than half said they stayed with the same provider.

In contrast, only 31 to 36% of ALS, MS, and Parkinson’s patents said they stayed with a provider they were skeptical about.

To understand what defines good care, and to create principles for care and provider performance, researchers collected more than 1,200 answers from over 200 questionnaire participants, including PatientsLikeMe members, doctors and researchers.

The information led to a 10-question checklist to help patients evaluate the quality of their care. It can be downloaded here.

“Patients are the ultimate arbiters of health care 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.”

The full poll results are available at the PatientsLikeMe website here.