Update 10: The data for ParkinsonNEXT

7 January 2021

Ingredients for a project page at ParkinsonNEXT

Update 10: The data for ParkinsonNEXT

After sharing the good news about the grant for ParkinsonNEXT, I receive an e-mail from them. They need data to set up a project page on www.parkinsonnext.nl.

To make a project page, they have the following questions. I have included the answers in this update:

  • What does the project entail?
    A significant proportion of people with parkinson's disease suffer from obstacles in thinking, often even before diagnosis. Problems with attention and concentration, difficulty starting and stopping, being slower in thinking and acting, finding it more difficult to keep an overview and to plan, having difficulty with stimulus processing. All these kinds of obstacles lead to visible and less visible hiccups in carrying out daily activities and thus directly affect the quality of life.
    In the COPIED study* we are looking for the detours that people with Parkinson's disease and their families have thought up themselves to get around the cognitive obstacles they encounter. We will list, compile and test their tips and tricks with the ultimate aim of developing a self-help tool. 
  • Why is this project important?
    Obstacles to thinking are anunderexposed aspect of Parkinson's disease. This study hopes to contribute to greater visibility and understanding of the cognitive side of parkinson's by widely sharing the insights of the people affected. 
  • What is expected from participants?
    Participants are expected to tell as openly as possible about their obstacles in thinking and the detours they have found around them - together with those around them.
  • What does it give participants?
    This research results in a practical tool for patients and their families to circumvent cognitive obstacles caused by Parkinson's disease.
  • What are the criteria for participation?
    The criteria are that you have Parkinson's disease or are a relative of someone with Parkinson's disease and experience obstacles in thinking.
  • Which organisations are involved in the project?
    The funding agency is the Parkinson's Association. In addition, we have received funding for ParkinsonNEXT from the Parkinson Foundation Netherlands.
    Furthermore, a whole team of people from different organisations is involved.
  • How many participants are needed?
    The research consists of three phases:
    January/February 2021
    In phase 1 we will go in depth. Here we want to collect the richest possible data on perceived barriers to thinking in Parkinson's disease and the detours around them. We do this by interviewing participants and then asking them questions in four digital focus group meetings. For this we need 12 people with Parkinson's and 4 partners. And the participants have arrived!
    June 2021
    In phase 2 we use a survey to find out whether the identified obstacles and detours are recognisable to a larger group of people with parkinson's disease. In this phase we need as many people as possible. The survey is online and people can simply fill it in at home. They need a maximum of 20 minutes to do so.
    November 2021
    In phase 3, the self-help tool is tested. The tool is distributed among 15 people with Parkinson's and, if possible, their families. After two months of home use, we conduct a semi-structured in-depth interview with the participants about their experiences. In principle, this takes place at the participants' homes, but if Corona and/or the participants wish, it can also be done online.
    The translation to an updated version of the tool then follows. The project ends in April 2022.   
  • Is there a specific url you want to redirect to from ParkinsonNEXT?
    To https://co piedstudie.nl please.
  • If a study protocol is available, you may send it.
    Sure, see this blog post.
Cognitive Obstacles & Detours in Parkinson's: Information Processing Tips for Every Day 
 

I am looking forward to the project page that the ParkinsonNEXTers will brew with these ingredients. Furthermore, I am especially looking forward to the participants who will be made aware of the COPIED study through ParkinsonNEXT and who want to share their experiences with us.   

Marina

Update 10: The data for ParkinsonNEXT

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