Abstract
Objectives Explore whether socioeconomic differences of patients affect the prioritisation of pre-existing research questions and explore the agreement between healthcare professionals (HCP) and patients in priority setting partnerships (PSPs).
Design and setting Prospective, three centre survey across UK (400 participants), Tuebingen (176 participants) and Luxembourg (303 participants). People with Parkinson’s (PwP), research participants, relatives and HCP associated with three Parkinson’s cohort studies were invited to participate, along with linked centres (clinical care settings, research groups, charities). Responders were encouraged to pass on the survey to friends/families/carers.
Methods The survey involved rating the importance of research questions on a Likert scale, allowing for the generation of one new question participants felt was particularly important. Collection of demographic information allowed for comparisons of priorities across a range of socioeconomic variables; the top 10 research priorities for each group were then compared. Questions added by participants were subject to a thematic analysis.
Results 879 participants completed the survey (58% PwP, 22% family/friends, 13% HCP, 4% carers). Finding the best form of physiotherapy for PwP was the number one priority across the majority of analyses. HCP were the only subgroup not to place physiotherapy in the top 10. Factors most likely to affect prioritisation in PwP included educational level, presence of carer support and disease duration. There was little difference between other socioeconomic categories.
Conclusions Socioeconomic factors modestly influenced some research priority ratings but did not significantly affect the top priority in most comparisons. Future studies must ensure patients from a range of socioeconomic backgrounds are recruited, ensuring results generalisable to the public while also identifying any key disparities in prioritisation. PSP should also take care that HCP do not skew results during prioritisation of questions, as in this study the most important priority to patients was not identified by professionals.
Design and setting Prospective, three centre survey across UK (400 participants), Tuebingen (176 participants) and Luxembourg (303 participants). People with Parkinson’s (PwP), research participants, relatives and HCP associated with three Parkinson’s cohort studies were invited to participate, along with linked centres (clinical care settings, research groups, charities). Responders were encouraged to pass on the survey to friends/families/carers.
Methods The survey involved rating the importance of research questions on a Likert scale, allowing for the generation of one new question participants felt was particularly important. Collection of demographic information allowed for comparisons of priorities across a range of socioeconomic variables; the top 10 research priorities for each group were then compared. Questions added by participants were subject to a thematic analysis.
Results 879 participants completed the survey (58% PwP, 22% family/friends, 13% HCP, 4% carers). Finding the best form of physiotherapy for PwP was the number one priority across the majority of analyses. HCP were the only subgroup not to place physiotherapy in the top 10. Factors most likely to affect prioritisation in PwP included educational level, presence of carer support and disease duration. There was little difference between other socioeconomic categories.
Conclusions Socioeconomic factors modestly influenced some research priority ratings but did not significantly affect the top priority in most comparisons. Future studies must ensure patients from a range of socioeconomic backgrounds are recruited, ensuring results generalisable to the public while also identifying any key disparities in prioritisation. PSP should also take care that HCP do not skew results during prioritisation of questions, as in this study the most important priority to patients was not identified by professionals.
| Original language | English |
|---|---|
| Article number | e049530 |
| Number of pages | 12 |
| Journal | BMJ Open |
| Volume | 12 |
| Issue number | 6 |
| DOIs | |
| Publication status | Published - 29 Jun 2022 |
Bibliographical note
Funding Information:FB discloses work position is funded by grants from the European Commission and Parkinson’s UK during the conduct of the study. ML discloses his work position is funded by Parkinson’s UK (but did not receive grant). RK received grants from Horizon 2020, Fonds National de Recherce, German Research Council, and received support for other purposes from Abbvie and Zambon. IL-S discloses grants from European Commission, H2020-TWINN-2015, during the conduct of the study; grants from International Parkinson Fonds (Deutschland) GmbH (IPD), grants from German Ministry for Education and Research, grants from Johnson & Johnson, grants from Michael J Fox Foundation, grants from National Centre of Excellence in Research, Luxembourg National Research Fund, outside the submitted work. MTH discloses grants were received from Horizon 2020, NIHR Oxford Biomedical Research Centre and Parkinson’s UK. JW, CW, CL, PS and A-MH report no disclosures or competing interests.
Funding Information:
This project was supported by the European Union’s Horizon 2020 research and innovation programme, grant number 692 320. This work was supported by the Parkinson’s UK Monument Trust Award, grant number J-1403 and supported by the National Institute for Health Research (NIHR) Oxford Biomedical Research Centre based at Oxford University Hospitals NHS Trust and University of Oxford, and the Dementias and Neurodegenerative Diseases Research Network. Ms Samantha Bowring who assisted with manuscript revision and focus group as an independent observer/note taking.We would like to thank all the people who have participated in this study and contributed to the manuscript.
Funding Information:
This project was supported by the European Union’s Horizon 2020 research and innovation programme, grant number 692 320. This work was supported by the Parkinson’s UK Monument Trust Award, grant number J-1403.
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