The self-management support needs of people newly diagnosed with psoriatic arthritis: a realist review protocol

ABSTRACT

Introduction Psoriatic arthritis is a form of inflammatory arthritis linked to psoriasis. Previous research from the UK has found that many people feel unsupported when newly diagnosed with psoriatic arthritis and lack confidence in managing their condition. This realist review aims to understand what works and does not work for whom and in what circumstances, in relation to healthcare professionals engaging with people to support them in developing self-management skills.

Methods and analysis This protocol was developed by defining the scope of the review, using a brief directed literature review to support discussion by an expert group of researchers, healthcare professionals and a patient partner. A theoretical domains framework was generated, consisting of nine initial programme theories. These were further refined with input from Patient and Public Involvement and Engagement (PPIE) groups and used to develop a database search strategy.

A systematic database search will be carried out, supplemented by citation tracking, exploration of grey literature and a mixed methods survey of rheumatology health professionals. Data selection will be performed by a minimum of two reviewers and data from included sources will be extracted using a template. Data will be synthesised narratively with respect to the identified initial programme theories, using this data to refine or refute these theories. This will generate refined programme theories to explain what works for whom and in what circumstances.

Ethics and dissemination Ethical approval for the health professionals survey was granted through the Research Ethics Committee, University of the West of England (Project ID: 10991848). Outputs will be disseminated to the research community through conference presentations and a peer-reviewed journal article. The strategy for sharing outputs with patients and health professionals will be discussed and agreed with knowledge user groups.

Strengths and limitations of this study

- The use of realist methodology will facilitate exploration of the elements of self-management support that are beneficial, who they benefit and under what circumstances.

- PPIE contributions throughout the review process will ensure that the protocol, findings and subsequent discussion are relevant and reflect the lived experience of people with psoriatic arthritis.

- Only evidence available in English language will be included.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

This realist review protocol is part of the project Total bUrden of Long-term PSoriasis - TULiPS, which is funded by an NIHR Programme Development Grant (award ID: NIHR206944).

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

Ethical approval for the health professionals survey was granted through the Research Ethics Committee, University of the West of England (Project ID: 10991848).

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Data Availability

All data produced in the present study are available upon reasonable request to the authors

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