Parkinson's Disease

Upgrading PD Patient Care

I have previously written about plans for a Denver meeting of neurological experts and specialists to discuss Parkinson’s disease and palliative care. It occurred Oct. 3-4 sponsored and funded by the Parkinson’s Disease Foundation. I was privileged to take part as a patient presenter of the plan I outlined in my Sept. 26 post.

You will recall palliative care focuses on providing maximum comfort to patients. Kirk Hall, my co-author, and I prefer to call it the Life Enhancement plan for Parkies at all stages of their disease. (See below for Kirk’s fuller explanation of palliative care.)

I was one of several patients who told our stories about living with Parkinson’s disease in its various phases of progression. The stories were enormously powerful and the feedback from the professionals supportive and enthusiastic. Our narratives ranged from the shock at diagnosis to how alone and confused we felt after learning that we had a progressive and incurable neurological disease—a disease that affects not only the neuro-muscular system but many other functions such as digestive, smell, sleep and thinking (cognition).

My first impression of the experts in the hotel meeting room was how young they looked. Here we were, a group of 60-plus-year-old patients and caregivers, talking to aces who could be our grandchildren. And these were awfully smart and dedicated young people whom I quickly came to respect for their dedication and knowledge.

The primary difference between we patients and caregivers and the various neurological pros was our focus on qualitative actions versus their need to validate results by quantitative measures.

The patients favored action steps, such as one-stop shop for authoritative information for patients and caregivers.

By contrast our audience lived in a far more quantitative world that is required by their disciplines. Life experience truths were not sufficient for the work they needed to do in their world of high-powered measurement and proof.

It was clear to me and the other patients that an organized and efficient system of treatment utilizing the right professional at the right time in disease progress was a no-brainer to establish. The researchers, by contrast, even if they agreed with us, bore the burden of proving with bullet-proof data that the new system would produce better results for patients than the current system (or better, non-system).

Nonetheless at the conclusion of the two-day meeting, there was a remarkable accord about next steps in moving toward a new system of organized care.

To give you some examples, one of the tasks the group will undertake is “theoretical model and practical next steps for caregiver research and support.” A second was “an outcome measures working group including review paper summarizing state of evidence with recommendations.” On the qualitative side was a recommendation to publish in a neurological journal a letter suggesting what neurologists should be doing better for patients. One very ambitious recommendation was “categorizing, summarizing and critiquing what resources are currently available for patient education…”

There were other recommendations to create new committees and coordinating bodies to make permanent the palliative (“Life Enhancement”) movement with an ongoing series of caucuses and professional interest groups.

My colleague Kirk Hall describes an ongoing next step: “A new clinical research study titled ‘Does outpatient palliative care improve patient-centered outcomes in Parkinson’s disease?’ has begun at University of Colorado Hospital Anschutz Campus and is actively seeking interested individuals over the age of 40 that have been diagnosed with probable Parkinson’s disease and their care partners. Dr. Benzi Kluger is the principal investigator for the study, which is being funded by the Patient-Centered Outcomes Research Institute (PCORI) and will take place over a period of three years. There are two additional sites at the University of Alberta and the University of California San Francisco. Information regarding this study is available on the Fox Trial Finder site:

“Many people are confused by the term palliative care. It is a treatment approach focused on improving quality of life by relieving suffering in the areas of physical symptoms such as pain, psychiatric symptoms such as depression, psychosocial issues, and spiritual needs for PWPs, care partners, and families at all stages of PD. Hospice and palliative care are not the same thing. Hospice can be an extremely valuable end-stage service and is an under-utilized subset within the palliative care spectrum. This study plans to learn more about the effect of palliative care on patients with Parkinson’s Disease and their care partners.”

To summarize, through the leadership of Dr. Kluger, who organized the Denver conference, a very large ball in the treatment of Parkinson’s has begun rolling. There is no reason that parts of the larger three-site study can’t be implemented now in other cities.


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