New PatientsLikeMe Studies Reveal How Patients Experience and Define “Good” Health Care
Patients living with fibromyalgia, PTSD, major depressive disorder are the least satisfied with their care, those with ALS, MS, Parkinson’s are among the most satisfied; a new checklist helps patients find providers who meet the criteria for delivering good care
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Results from a six-question online poll conducted in
“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
The Patient Experience: Poll Results
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. Half or less of the respondents living with these conditions (47 percent of fibromyalgia and PTSD patients and 53 percent of MDD patients) agree their provider has done so, compared to 63 percent of patients living with ALS, MS and Parkinson’s disease.
- Report that they are receiving the best possible health care for their condition. Only 40 percent of fibromyalgia patients, 49 percent of PTSD patients and 45 percent of MDD patients believe they are receiving the best possible care, vs. 66 percent of ALS patients, 61 percent of MS patients, and 57 percent of Parkinson’s disease patients.
- Change providers even though they think they are not receiving the best care or effective treatment. More than half of these patients (53 percent of PTSD and 56 percent of both MDD and fibromyalgia patients) have stayed with a provider even though they do not think they are receiving the best care or treatment, vs. just 31 percent of ALS patients and 36 percent of MS and Parkinson’s 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,” 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.”
Full poll results are available at http://news.patientslikeme.com/.
Patient-Defined Good Care
The goal of the primary study was to understand what good care really looks like, and to gather core principles about care and provider performance. Researchers recruited a diverse group of
- Active Patient Role in Care – do you play an active role in the decision making process, and do you understand your diagnosis and your treatment options?
- Effective Treatment Selection – do you feel that your care is thorough, safe, appropriate, and accurate?
- Effective Care Delivery – does your provider arrive prepared for appointments, and follow-up afterwards?
- Focus on Outcomes – does the treatment help your condition and improve your everyday life?
- Doctor or Provider Competence – is your provider up to date and informed about your condition and treatment?
- Individualized and Empathic Care – does your provider listen to you and seem to care about you as a person?
- Collaborative Care – does your provider value your opinion and view you as a whole person when it comes to your care?
- Effective Staff Communication – do your medical providers communicate well with each other?
- Care Accessibility and Cost – do you have easy access to the office where you receive treatment, and is your care sufficiently covered by insurance and/or affordable to you?
- Office Management – is the medical staff organized with appointments and with your insurance company?
A video recap of the study is available as is a 10-question checklist to help patients easily evaluate the quality of their own provider and care. A micro documentary about the
About
Poll Methodology
Between
PatientsLikeMe Good Care Poll Questions and Responses
Fielded
How much do you agree or disagree with the following statements?
My provider has fully explained treatment options that offer the best chances of success in treating my condition. (N=2559)
Strongly disagree | 313 (12.2%) | |||
Disagree | 430 (16.8%) | |||
Undecided | 333 (13.0%) | |||
Agree | 830 (32.4%) | |||
Strongly agree | 653 (25.5%) |
My provider has sufficient knowledge and experience to treat my condition. (N=2559)
Strongly disagree | 216 (8.4%) | |||
Disagree | 241 (9.4%) | |||
Undecided | 363 (14.2%) | |||
Agree | 778 (30.4%) | |||
Strongly agree | 961 (37.6%) |
My provider and I are working as a team in treating my condition. (N=2559)
Strongly disagree | 234 (9.1%) | |||
Disagree | 283 (11.1%) | |||
Undecided | 320 (12.5%) | |||
Agree | 880 (34.4%) | |||
Strongly agree | 842 (32.9%) |
I am receiving the best possible health care for my condition. (N=2559)
Strongly disagree | 285 (11.1%) | |||
Disagree | 357 (14.0%) | |||
Undecided | 557 (21.8%) | |||
Agree | 733 (28.6%) | |||
Strongly agree | 627 (24.5%) |
Have you stayed with a provider even though you did not think that you were receiving the best care or effective treatment? (N=2559)
Yes | 1120 (43.8%) | |||
No | 1277 (49.9%) | |||
I don't know | 162 (6.3%) |
Is there anything else you'd like to add about what you consider important in good medical care? [open text; responses not included] (N=2559)
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