Kirk's Blog

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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.

PD Palliative Care Clinical Research Study Update

 

 

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Two years ago I wrote an article regarding a new patient-centered research study for which recruiting had begun.  This exciting study is now about 50% complete.  This article will recap what has taken place and what remains to be completed.

The study itself evolved from a series of events that took place during 2013-14.  During the spring of 2015, after the study proposal had been submitted to PCORI, Dr. Kluger (lead for the study) asked me to put together an “advisory council” of patients and caregivers to participate and provide feedback on all aspects (design, implementation, analysis, and outcomes report) of the study.  Recruiting volunteers for this task was not a problem once the purpose of the study had been explained as well as the potential impact on the PD community.  This team included patients at varying levels of progression and experienced caregivers, some of which had lost loved ones to PD or PD-related issues (i.e. PD dementia).

We all provided input that was used in the development of the proposal for the study, which was approved by PCORI mid-2015.  Before the study started, we provided input regarding the PD Palliative Care team structure and some of the tools they planned to use, as well as detailed feedback on the planned interaction with participants.  We met periodically to review progress with the research team.  Regarding recruiting, Dr. Kluger told us that our meetings with area support groups was responsible for 90%+ of the seventy study participants (the total for all three sites was 210) in the Denver area.  I would estimate that we (Malenna Sumrall, Dr. Kluger, and me) held around twenty meetings starting late 2015 through mid-2017 for the purpose of educating our PD community regarding this study and seeking their participation.

If memory serves (which it often doesn’t, but I think I’m close), it was September of this year when Dr. Kluger met with the council to let us know we had met our recruiting goals.  The next step would be for the research team with assistance from council members to analyze all the interviews that were held with the study participants in each location.  So we have been reading copies of the interviews with patients and caregivers from both the study (received care from the palliative care team) and control (received standard care from their doctor) groups.  We make notes for each and meet with the research team (in person or by phone) to review our observations and feedback as patients and caregivers.

This part of the study is exciting as we start to see trends and themes emerge.  It is very gratifying to part of this process because it is obvious that our experience and insights provide real value.  I am not sure how long it is going to take to get through all the interviews, but I would guess through mid-2018.  At that point we will be able to summarize the results of the study and provide conclusions.

I know there is a lot of interest in the outcome of this study.  While I am not able to share anything specific, let me just say those of us who support the PD palliative care team concept are extremely encouraged by what we have learned to date.  Stay tuned!

Singing & Me