Table 1 Characteristics of included studies

Blackburn 2017 [19]

UK, Netherlands, Norway, Denmark and Portugal

1. Simultaneous support and PPI involvement on OA guidelines implementation.

2. Quality indicators as part of OA guideline implementation.

Qualitative

Osteoarthritis

7

Primary care

Patients and researchers

Describes overarching PPI involvement, process of PPI support and steering of associated implementation projects

Campbell 2018 [20]

UK, Netherlands, Norway, Denmark and Portugal

To support translation and cultural adaptations of the OA Guidebook (based on NICE OA guidelines) appropriate for local context and use by patient champions and health professionals

Qualitative

Osteoarthritis

15

Varied-main target is primary care

Patients & HCPs

15 patients formed a CoP who also engaged with various OA patient organisations

DeKeyser 2015 [21]

Belgium

To develop patients’ version of the EULAR recommendations and enhance the level of information available to increase possibilities of self-management

Qualitative

Rheumatic and Musculoskeletal diseases

18

NR

Patients

Involved patient partners trained to be partners in research. Contributors previously trained and experienced in PPI activities

De Wit 2011 [22]

Cyprus, Czech Republic, Denmark, Ireland, Norway, Portugal, Netherlands, Romania and UK

To develop a patient version of the Treat to target (EULAR recommendations for Rheumatoid arthritis).

Qualitative

Rheumatoid arthritis

9- aged 31–66yrs, 1 male

NR

Patients

Recruitment and selection of participants was aided by a large patient organisation: EULAR Standing Committee of Patients with Arthritis/Rheumatism in Europe through purposive sampling accounting for geographical variation, gender and age. English language proficiency (read/speak) was required.

Dziedzic et al. 2018, 2014 [23, 24], Blackburn 2016 [25]

UK

Study investigated approach to implementing core NICE OA recommendations in primary care supported by PPI

Mixed methods study (including consensus methods) with a nested cluster randomised controlled trial

Osteoarthritis

10: 5 males, 5 females; aged 52–80 years

Primary care

Patients & HCPs

Newly formed dedicated Research user group with OA worked in partnership with researchers throughout the study, including the development of patient reported Quality indicators for evaluating use of guideline recommendations in primary care OA consultations.

Kiltz 2010 [26]

Germany

To describe how the English lay version of EULAR recommendations was translated into German by a group of patients.

Qualitative (evaluation)

Ankylosing Spondylitis

13 patients from German Language area distributed (10 AS patients from Germany, 2 from Switzerland and 1 from Austria).

Patients

PPI contributors were also asked to confirm their acceptance of the German translation and degree of consent to the content of the recommendations.

McCaul 2020 [27]

South Africa

To provide contextually relevant, evidence-informed guidance on the assessment and management of chronic musculoskeletal pain (CMSP).

Qualitative (case studies- only 1 of 4 presented here was relevant to MSK)

Chronic musculoskeletal pain

Sample not reported. Patient input was sought as part of development, along with broader stakeholderconsultation

Primary care

HCPs

Single study from Africa. Details of actual PPI activities/process of involvement and demographics of contributors not reported.

Özgöçmen 2009 [29]

Turkey

To evaluate the Turkish translation of the patient version of the (ASAS) and (EULAR) recommendations for the management of ankylosing spondylitis.

Qualitative

Ankylosing Spondylitis

12 patients (4 female, 8 males, mean age 39.5 and disease duration 11.5 years from various provinces of Turkey).

Patients

PPI contributors were members of the Ankylosing Spondylitis Patient Society of Turkey.

O'Sullivan 2017 [28]

UK

To describes how a patient-oriented guide to treatment recommendations was developed by GRAPPA’s patient research partners.

Qualitative

Psoriatic Arthritis

3 members (lead writer and 2 co-writers) volunteered to prepare an initial workingdraft of the guide.

Primary care

Patients

Unclear whether PPI contributors involved or not. Streamlined project team reported experience in writing, editing, graphic design, and project delivery skills yielded a better quality first draft within a reasonable time period. Patient research partners appear to be highly trained and well experienced in research related to the (PRP).Addressed readability and accessibility to broad patient audience.

Swaithes 2020 [30]

UK

To understand uptake of OA recommendations, and explore the journey from a clinical trial to implementation

Qualitative–secondary analysis of focus groups and stakeholder interviews

Osteoarthritis

Not specified but sourced from a large network of public contributors and managers involved with healthcare

Primary care

Researchers & Commissioners to inform implementation

Linked to NICE OA guideline implementation projects