Outcomes of periodontal therapy: Strengthening the relevance of research to patients. A co‐created review

Abstract

Periodontitis is a long‐term condition affecting up to half of the population globally and causing significant impacts on life quality. Successful management depends on taking life‐long ownership of the condition by those affected. There is a wealth of research to inform on management options. However, most of the research has been designed by professional experts with outcomes to gauge benefits and harms based on parameters that inform on the disease process but which might not be informative to support decision‐making in people with lived experience (PWLE) of periodontal ill‐health (including both patients and carers). The importance of relevant outcomes is highlighted in the concept of the “expert patient” which aims to strengthen the capacity of PWLE to make health‐care choices that are important for them, elements of which are likely to be already familiar to many clinicians delivering periodontal health care. Therefore, the voice and collaboration of PWLE in research are recognised as crucial to developing high quality, relevant evidence especially for long‐term conditions. In this paper, we review what is known about the relevance of treatment outcomes to PWLE. We also examine the degree to which PWLE have been involved in identifying outcomes that are important to them as well as the diversity and therefore representativeness of PWLE recruited for studies. We consider why having more relevant outcomes could enhance the expertise of PWLE in managing their periodontitis. We then conclude with key learnings from our review which we hope will encourage more rapid development of these initiatives in periodontology for the benefit of global health and wellbeing.

Involving people with lived experience in developing a core outcome set for implant dentistry research. The Implant Dentistry‐Core Outcomes Sets and Measures (ID‐COSM) project

“…However, employing this COS alone is only part of the journey towards improving the relevance of research to PWLE and the public more widely. Other elements will include involving PWLE and the public as co‐researchers in the team, ensuring that the diversity of the recruited participants matches the target population(s) and using a wide array of platforms to share results from research studies, both to the public and to health professionals (Needleman et al, 2023; Raval et al, 2021). Furthermore, implementation of COS is challenging with low uptake in published studies and systematic reviews (Williamson et al, 2022).…”

“…Therefore, basing core outcomes only on existing literature could greatly limit relevance to PWLE since the outcome set would have been defined by DPs and researchers. A recent review has highlighted that these limitations remain in the field of periodontology (Needleman et al, 2023). The involvement of PWLE can be considered part of the ‘Citizen‐Science’ initiative.…”

“…PWLE bring their expertise and perspective, which are important to capture in measuring treatment outcomes. Including outcome measures relevant to PWLE may improve health literacy and adherence to care, which are important contributors to achieving long‐term health (Needleman, 2014; Needleman et al, 2023). The voice of PWLE, therefore, plays an important role in identifying key outcomes for research, and this perspective might differ from or complement academic researchers and other stakeholders (Raval et al, 2021).…”

Involving people with lived experience in developing a core outcome set for implant dentistry research. The Implant Dentistry‐Core Outcomes Sets and Measures (ID‐COSM) project

“…Therefore, basing core outcomes only on existing literature could greatly limit relevance to PWLE since the outcome set would have been defined by DPs and researchers. A recent review has highlighted that these limitations remain in the field of periodontology (Needleman et al, 2023). The involvement of PWLE can be considered part of the 'Citizen-Science' initiative.…”

Justification for the 2017 periodontitis classification in the light of the Checklist for Modifying Disease Definitions: A narrative review

“…It is our view that the patients and the wider communities served by dental professionals should be heard and listened to, and their experiences and preferences should be incorporated in the health care decisions that concern them, as also suggested elsewhere. [76][77][78] Hence, the stakeholders for a new periodontitis classification system are many more than just periodontal clinicians and researchers (e.g. patients, policymakers, public health experts, etc.…”