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Patient involvement to explore research prioritisation and self-care management in people with periodontitis and diabetes

Abstract

Aim To investigate, firstly, research priorities for people with periodontitis and those with periodontitis and diabetes. Secondary aims were to explore disease self-management barriers, difficulties and enhancers for people with periodontitis and/or diabetes, mutual learning in patient groups regarding self-care and views of academic researchers on patient-derived research prioritisation.

Materials and methods Research prioritisation and self-care management was based on the James Lind Alliance workshop methodology. Participants generated and ranked research priorities and enhancers and barriers to self-care management. Semi-structured interviews were undertaken to explore the views of academic staff about patient and public involvement (PPI) and the findings from this research.

Results Periodontitis patients ranked preventive educational interventions highest, whereas the top priority for those with both periodontitis and diabetes was increasing public awareness about periodontitis and systemic health links. Regarding self-care, both periodontitis and diabetes groups highly ranked the importance of being able to self-assess their condition and efficacy of management. Important barriers for the diabetes patients were psychological issues, while for periodontitis patients, the main barrier was receiving conflicting or lacking information. Both groups reported that shared learning helped to develop a better understanding of their conditions and improved management. Academics believed it was essential to involve patients in developing research and most felt the findings would influence their institutions' research priorities; however, they would not change their own research only based on patients' perspectives.

Conclusions The workshops led to new insights for research priorities and approaches for health self-management. PPI should be further investigated across oral health applications.

Key points

  • Oral healthcare and research are usually developed and delivered to patients, but not with patients as collaborators. Patients and the wider public are being increasingly valued as partners to improve both healthcare and research.

  • People with lived experience of diabetes or periodontitis bring novel insights into self-management and research prioritisation, with potential to mutually benefit the health and wellbeing of these different but inter-related chronic conditions.

  • Forums that allow patients and clinicians to meet and engage can help participants to understand and better manage their own conditions.

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Acknowledgements

The authors would like to thank Diabetes UK Patient and Public Involvement Research and the UCL/UCLH Biomedical Research Centre PPI team for help in recruiting participants. There was no external funding for this research.

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Correspondence to Ian Needleman.

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The authors declare no conflicts of interest. Ian Needleman is an advisory group member of the UCL Centre for Co-Production in Health Research and leads the British Society of Periodontology Patient Forum. The SRQR checklist for reporting studies of qualitative research was used.

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Raval, P., Moreno, F. & Needleman, I. Patient involvement to explore research prioritisation and self-care management in people with periodontitis and diabetes. Br Dent J (2021). https://doi.org/10.1038/s41415-021-3175-9

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