Participatory research: a Priority Setting Partnership for chronic musculoskeletal pain in Denmark

Kristian D Lyng; Jesper B Larsen; Kathryn A Birnie; Jennifer Stinson; Morten S Hoegh; Thorvaldur S Palsson; Anne E Olesen; Lars Arendt-Nielsen; Lars H Ehlers; Kirsten Fonager; Martin B Jensen; Hanne Würtzen; Patricia A Poulin; Gitte Handberg; Connie Ziegler; Lars B Møller; Judi Olsen; Lotte Heise; Michael S Rathleff

doi:10.1515/sjpain-2022-0019

Participatory research: a Priority Setting Partnership for chronic musculoskeletal pain in Denmark

Scand J Pain. 2022 Aug 2;23(2):402-415. doi: 10.1515/sjpain-2022-0019. Print 2023 Apr 25.

Authors

Kristian D Lyng^{1

2}, Jesper B Larsen¹, Kathryn A Birnie^{3

4

5}, Jennifer Stinson^{6

7

8}, Morten S Hoegh¹, Thorvaldur S Palsson^{1

9}, Anne E Olesen^{10

11}, Lars Arendt-Nielsen^{12

13}, Lars H Ehlers^{14

15}, Kirsten Fonager^{11

16}, Martin B Jensen², Hanne Würtzen¹⁷, Patricia A Poulin^{18

19

20}, Gitte Handberg^{21

22}, Connie Ziegler²³, Lars B Møller²⁴, Judi Olsen²⁵, Lotte Heise²⁶, Michael S Rathleff^{1

2}

Affiliations

¹ Department of Health Science and Technology, Faculty of Medicine, Aalborg University, Denmark.
² Center for General Practice at Aalborg University, Department of Clinical Medicine, Aalborg University.
³ Department of Anesthesiology, Perioperative, and Pain Medicine, University of Calgary, Calgary, Alberta, Canada.
⁴ Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada.
⁵ Alberta Children's Hospital Research Institute, Calgary, Alberta, Canada.
⁶ Child Health Evaluation Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁷ Department of Anesthesia and Pain Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁸ Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada.
⁹ Department of Physiotherapy and Occupational Therapy, Aalborg University hospital, Aalborg, Denmark.
¹⁰ Department of Clinical Medicine, Faculty of Medicine, Aalborg University, Aalborg, Denmark.
¹¹ Department of Clinical Pharmacology, Aalborg University Hospital, Aalborg, Denmark.
¹² Center for Neuroplasticity and Pain (CNAP), SMI, Department of Health Science and Technology, Faculty of Medicine, Aalborg University, Aalborg, Denmark.
¹³ Department of Medical Gastroenterology, Mech-Sense, Aalborg University Hospital, Aalborg, Denmark.
¹⁴ Danish Center for Clinical Health Services Research (DACS), Department of Clinical Medicine, Aalborg University, Aalborg.
¹⁵ Denmark & Nordic Institute of Health Economics, Aarhus, Denmark.
¹⁶ Department of Social Medicine, Aalborg University Hospital, Aalborg, Denmark.
¹⁷ Department of Neuroanaesthesiology, The Multidisciplinary Pain Centre, Rigshospitalet, Copenhagen, Denmark.
¹⁸ Department of Psychology, The Ottawa Hospital, Ottawa, Ontario, Canada.
¹⁹ Clinical Epidemiology Program, The Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
²⁰ Department of Anesthesiology and Pain Medicine, University of Ottawa, Ottawa, Ontario, Canada.
²¹ Pain Research Group, Pain Center, Odense University Hospital, Odense, Denmark.
²² Pain Center, Odense University Hospital, Odense, Denmark.
²³ Danish Rheumatism Association, Denmark.
²⁴ The Association for Chronic Pain Patients and Relatives, Denmark.
²⁵ The Danish Fibromyalgia & Pain Association, Denmark.
²⁶ Danish Broadcasting Corporation, Denmark.

PMID: 35918804
DOI: 10.1515/sjpain-2022-0019

Abstract

Objectives: Patient and stakeholder engagements in research have increasingly gained attention in healthcare and healthcare-related research. A common and rigorous approach to establish research priorities based on input from people and stakeholders is the James Lind Alliance Priority Setting Partnership (JLA-PSP). The aim of this study was to establish research priorities for chronic musculoskeletal (MSK) pain by engaging with people living with chronic MSK pain, relatives to people living with chronic MSK pain, healthcare professionals (HCP), and researchers working with chronic MSK pain.

Methods: This JLA-PSP included a nation-wide survey in Denmark, an interim prioritisation, and an online consensus building workshop. The information gained from this was the basis for developing the final list of specific research priorities within chronic MSK pain.

Results: In the initial survey, 1010 respondents (91% people living with chronic MSK pain/relatives, 9% HCPs/researchers) submitted 3121 potential questions. These were summarised into 19 main themes and 36 sub-themes. In the interim prioritisation exercise, 51% people living with pain/relatives and 49% HCPs/researchers reduced the list to 33 research questions prior to the final priority setting workshop. 23 participants attended the online workshop (12 people/relatives, 10 HCPs, and 1 researcher) who reached consensus for the most important research priorities after two rounds of discussion of each question.

Conclusions: This study identified several specific research questions generated by people living with chronic MSK pain, relatives, HCPs, and researchers. The stakeholders proposed prioritization of the healthcare system's ability to support patients, focus on developing coherent pathways between sectors and education for both patients and HCP. These research questions can form the basis for future studies, funders, and be used to align research with end-users' priorities.

Keywords: chronic musculoskeletal pain; patient and public involvement; research priorities.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Community-Based Participatory Research
Cooperative Behavior
Denmark
Health Priorities
Humans
Musculoskeletal Pain* / therapy