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Parkinson's Patients Want More Info

Thursday October 03, 2013

Nancy Walsh

MedPage Today - Healthcare professionals in specialized Parkinson's disease centers could provide more patient-centered care if they focused on giving patients more detailed information and improving multidisciplinary collaboration, a survey indicated.

For example, on a questionnaire assessing various aspects of patient-centeredness, patients' mean rating score on the information subscale was only 1.7 when a score of 3 represented "very good" and zero meant "very bad," reported Martin van der Velde PhD, of Radboud University in Nijmegen, the Netherlands.

"When I started a project on patient-centeredness in Parkinson's disease 4 years ago, I wondered what the definition of patient-centered care was. It was quite a new term at the time," van der Eijk said here at the World Parkinson Congress.

"But the Institute of Medicine came up with a clear definition, saying that patient-centered care was respectful of, or responsive to, individual patient preferences, needs, and values and ensures that all patient values drive clinical decisions," he said.

With the goal of determining how to measure patient-centeredness, he and his colleagues developed a questionnaire based on focus groups that included patients, clinicians, and caregivers.

The questionnaire contained six subscales and 44 items. It was first validated in a Dutch population, subsequently translated into English, and has now been given to patients at 20 centers of excellence in the U.S. and Canada, including Johns Hopkins, Massachusetts General Hospital, and McGill University.

A total of 972 patients participated in the study, with an average of 49 patients per center.

Mean age was 68, and 60% were men.

Hoehn-Yahr scores measuring disease motor progression were primarily in the range of 1 to 3, or mild to moderate.

A total of 52% of patients were college-educated and 94% were white.

Good responses were seen on subscales measuring empathy, involvement in decision-making, emotional support, and accessibility. The low scores were for providing information and collaborative care, he noted.

"A unique feature of this study was that we provided feedback to all the participating centers, so they knew how their performance compared with the others," he said.

An example was the feedback given to the center that had the best result on the zero-to-3 scores for multidisciplinary collaboration, one of the areas needing improvement:

The worst score, 1.64
The best score, 2.29
Mean of all scores, 2.03
Your center's score, 2.29

For the other area with high patient dissatisfaction, the provision of detailed information, the researchers calculated quality improvement scores, with high scores representing high patient priority but low patient experiences.

The top five areas in which patients felt badly informed were:

What their healthcare professionals discussed with each other, 80.3%
Peer support, 75.3%
Adaptive equipment, 73.5%
Alternative therapies, 71%
Advanced treatment options, 62.6%

Patients also provided individual comments on treatment quality.

"My greatest disappointment after being diagnosed with Parkinson's disease was that no one told me about the benefits of exercise. It also was up to me to find support groups, holistic therapies, and experimental treatments. There was no coordination between caretakers, and no one was acting as my advocate or thinking about the 'whole me,'" van der Eijk quoted one patient as saying.

"Of course, there was a lot of positive feedback as well, but the take home message was that this study was a compelling call to healthcare professionals to provide more detailed information to their patients," he concluded.

The study was funded by the National Parkinson's Foundation.

Walsh, N. (3 Oct 2013). MedPage Today. Parkinson's Patients Want More Info. www.medpagetoday.com.

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