Title: DEvelopment of a Core outcome set for orAl health services research involving DEpendent older adults (DECADE)
Funder: Dunhill Medical Trust

Abstract: Older people (aged ≥65 years) are now retaining most of their natural teeth (NHS, 2009). As this population were not exposed to the preventive effects of fluoride in childhood, dental decay is becoming a major public health issue, with up to 40% experiencing new and active disease. As some older adults become increasingly dependent, self-care and oral hygiene start to deteriorate, and access to services becomes problematic. Poor oral health can significantly impact on older people’s quality of life, general health, cognitive decline and nutritional status (Moynihan et al., 2007; Gerritsen et al., 2010; Tsakos et al., 2014; Porter et al., 2015). Many oral diseases can be prevented; however, oral healthcare service provision for older adults is often unavailable or poor (PHE, 2015). Furthermore, the standard of knowledge about oral health amongst carers is limited (Brocklehurst et al., 2015). The WHO report on healthy aging, calls for the design of care systems that are fit-for-purpose and evidence-based (WHO, 2012). People’s emotional and practical response to challenges in health and the responsiveness of systems to their need, is crucial to improve the quality of service provision. Furthermore, the selection of appropriate outcomes is essential when designing clinical studies to directly compare the effects of different prevention and treatment approaches and health service models. The aim is to develop a core outcome set (COS) for oral health services research involving dependent older adults. To identify potentially relevant outcomes, a systematic review of previous studies examining the effect of prevention interventions to improve the oral health of dependent older adults will be undertaken (Brocklehurst et al., 2016). A consensus process involving semi-structured interviews, an E-Delphi survey with several rounds, and a face-to-face final consensus meeting will then be conducted with key stakeholders to generate a set of agreed standardised core outcomes. To facilitate this, the scale proposed by GRADE (GRADE Working group, 2018) will be employed during the E-Delphi survey, and at the final consensus stages when stakeholders will be asked to score each outcome gleaned from previous stages. Major stakeholders involved in the development will include dependent older adults, families, carers, care-home managers, researchers, Dentists (including Consultants in Dental Public Health, Restorative and Special Care Dentistry), Commissioners, Geriatricians, Dietitians and policymakers. Ultimately, the COS identified will improve the design and reporting of clinical studies, and help strengthen the evidence base for the provision of high quality oral healthcare to dependent older adults.

Lay abstract: Many older people (aged 65 years and over) are now retaining most of their natural teeth. However, since this generation were not exposed to fluoride (a mineral that helps prevent tooth decay that is added to toothpaste and the water supply in some areas) when they were younger, they are more likely to suffer from tooth decay. As some older people lose their ability to care for themselves, oral hygiene measures such as tooth brushing can also start to become very difficult to maintain. As the number of older people continues to increase, the number of older people with oral health problems will also increase. This will then place a huge demand on dental services. Poor oral health can have negative impacts on older people’s general health and their quality of life. There is an urgent need to improve oral healthcare for older people, especially those who are dependent (living at home or in residential care). Translating research into practice can be time consuming and difficult owing to the large amount of information generated by different studies. Systematic reviews are a tool used to summarise the findings of existing studies and make the information accessible to decision makers. On occasion, however, it can be difficult to combine the results of different studies because the outcomes measured are very different. In addition, the outcomes measured in some clinical studies are not very important to patients, clinicians or decision makers. To overcome these problems many researchers are developing a list of essential outcomes (Core Outcome Set), which should be reported as a minimum in all clinical studies for a specific health condition. This study aims to develop a set of relevant oral health outcomes specific to dependent older people that can be used by researchers and healthcare professionals. To develop a set of agreed oral health outcomes relevant to dependent older adults a multi-step research process will be carried out in accordance with international guidelines. This will involve reviewing existing research to identify oral health outcomes relevant to dependent older adults. Telephone interviews with key stakeholder groups (dependent older people, families, carers, care-home managers, clinical researchers, clinicians and policymakers) will be undertaken to identify outcomes that were not identified by the review and to define the most important outcomes. To generate a Core Outcome Set, an online survey will be conducted followed by a final consensus meeting with all the key stakeholders.

Research activity codes: 8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE;ORAL AND GASTROINTESTINAL