People impacted by Parkinson’s wanted for survey

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Background

In 2014, the James Lind Alliance and Parkinson’s UK set up a Patient Setting Priority group to find the top 10 research priorities that people living with Parkinson’s (PwP) and health and social care professionals would like to see answered. This was published in 2014 by Deane et al. The aim was to use this information to guide future research and make sure researchers focus on the most urgent needs of people affected by Parkinson’s.

At an OPDC open day in 2016, Professor Michele Hu introduced the priorities and asked attendees what their preferences were from the top 26 identified in the original survey. The open day participants selected different priorities to those published in the original Top 10. In addition, there were a lot of free text answers pertaining to speech problems and therapies.

OPDC would like to update the survey to reflect what current participants in Parkinson’s research and their friends/family would most like answered by research and how we, researchers and healthcare professionals, align with this. This will guide future research and how we communicate the results with the cohort.

The survey will be able to identify if the priorities change when considering: age/age at diagnosis, living arrangements, ethnicity, gender, socioeconomic status etc. by the collection of optional demographic information which will improve the understanding of if/how priorities change across different demographics.

Thanks to the collaborative work of CENTRE-PD, we will be able to survey people involved with similar cohort studies in Europe. CENTRE-PD is a European H2020 Twinning project whereby, University of Oxford and University of Tübingen are sharing knowledge and expertise with the University of Luxembourg (www.centre-pd.lu). We will pool the anonymous survey responses from all three sites, giving better statistical strength to our findings and to give comment on whether priorities change across different countries.

Objectives

From this survey, we hope to find:

1. The top 10 research priorities for the management of Parkinson’s;
2. How well the priorities of healthcare professionals and researchers align with PwP and their friends/family;
3. Potential differences in priorities across international geographical locations;
4. Whether current published/registered research projects are addressing the priorities adequately;
5. Guidance to form future research questions important to PwP and dissemination of research results.

Your help

The survey can be found at this link: www.tinyurl.com/centrepdtop10

Responses to this survey are completely voluntary and there is no obligation for you to take part.

If you would like to help, we will first need your consent to pool your anonymous survey responses with those we collect from our colleagues in Europe. Data handling will be done here in Oxford and the European partners will only be able to see your anonymous survey responses if necessary.

The data we collect is completely anonymous, please answer them as best you can, they are not all mandatory.

Please read through the list of questions* and rate how important each question is to you on a scale from 1 – 9, where 1 is not important / least important to you, and 9 is very important / most important to you.

If you have a suggestion for a priority that is not on the list, you have the opportunity to add one in, remember to rate it also. You can only add one question and it is not compulsory to do so.

If you have any family members or friends that you think may be interested in participating, please share this with them. They can contact Francesca for a postal form or they can complete the form electronically at www.tinyurl.com/centrepdtop10.

Volunteer for the Panel

During the first round of this survey, we are giving participants the opportunity to add a question they feel is not represented in the list of research priorities. These responses will be organised into themes and up to ten of the most common themes will be translated into appropriate research questions.

The volunteers of the panel will be presented the questions from the first round, plus the 10 new questions. The panel is then asked to rate all of the questions again including the new ones. There may need to be a few rounds of surveying before agreement is reached and they may need to do the survey a few times. After conclusion of the study, all email addresses will be deleted.

You can get more information or withdraw from the panel at any time point without giving a reason by contacting Ms Francesca Bowring.

Date required

30th November 2018 will be the first time point to include responses in the delphi panel. Survey responses are allowed until July 2019 but free text questions will not be included in the delphi panel. A postal pack is available and people may contact Ms Bowring for a return freepost envelope. Alternatively, participants may complete the online version.

Organisation

Oxford Parkinson's Disease Centre, NDCN, Oxford University.

Contact

Francesca Bowring, francesca.bowring@nhs.net, 01865234769
www.tinyurl.com/centrepdtop10