Original article
Older people and oral health: setting a patient-centred research agenda Paul R. Brocklehurst1, Laura Mackay2, Joanna Goldthorpe2 and Iain A. Pretty2 1
NWORTH Clinical Trials Unit, Bangor University, UK; 2Dental Health Unit, Williams House, Manchester Science Park, Manchester, UK
doi:10.1111/ger.12199 Older people and oral health: setting a patient-centred research agenda Objective: The aim of this pilot study was to provide the opportunity to enable older people to prioritise the research agenda to improve their own oral health. Background: Little is known about the ageing population’s views about their oral health from their perspective. Priority Setting Partnerships (PSPs) incorporate users’ perspectives to prioritise research agendas and are based on a series of sequential steps to build consensus. This structured approach ensures their narrative and thoughts are heard and helps counter the ‘top-down’ medical model that can dominate healthcare services. Materials and methods: A PSP was undertaken with four key stakeholder groups: service users, carers, third sector and specialists. Six initial questions were posed to each group prior to a facilitated discussion led by one of the research team. Collective responses where then considered by a final consensus group. The views of the different groups were recorded, transcribed verbatim and underwent thematic analysis. Results: The top three research priorities identified by the final group were to: (i) identify ‘best practice’ in the prevention and treatment of oral diseases for older people, (ii) identify the training needs for the dental profession and (iii) understand the key issues for older people from their perspective. Improving access to services, the importance of client appropriate information and the need for effective primary and secondary prevention were also articulated. Conclusion: Asking older people to prioritise the research agenda proved to be a positive experience. Key issues related to improving communication and the availability of appropriate evidence-based information on primary, secondary and tertiary prevention. Keywords: elderly, oral health, co-design. Accepted 3 April 2015
Introduction The number of ‘older people’ (aged 65 or older) is projected to grow to 1.5 billion by 2050 worldwide1. Half of the population in the United Kingdom (UK) will be over 50 years of age by 2050, 25% classed as ‘older people’ and the ‘oldest old’ (over 85 years) are projected to increase by 351%2,3. Access to care for the elderly becomes increasingly problematic with increasing age, and unlike previous generations, 94% will have their own teeth4,5. Many of the ageing population will eventually reside in care homes or will be cared for at home as their mobility and independence decrease further6. 222
Oral health impacts on the quality of life of older people and can also impact upon their general health7–9. The World Health Organization has called for a paradigm shift towards the concept of ageing10 and has developed a set of priorities based on four strategic areas: ‘healthy ageing over the life course’, ‘the design of health and long-term care systems that are fit for ageing populations’, ‘supportive age-friendly environments’ and ‘strengthening the research and the evidence base’11. Despite this, little is known about the ageing population’s views about their oral health from their perspective and what promotes ‘healthy ageing’. There also remains substantial scope for improving the quality of care for older people and
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
Older people and oral health
reducing health inequalities12. Whilst research has traditionally been based on the interests of researchers and those who fund them, there has been a shift in the UK recently to ensure that funding streams are influenced by the major stakeholders and beneficiaries of the emerging evidence base: patients, service users and their carers. Priority Setting Partnerships (PSPs) incorporate users’ perspectives to help prioritise research agendas and ensure they are patient-centred13,14. PSPs were developed by the James Lind Alliance in the UK to help mitigate the asymmetrical relationships that often exist between researchers and users of services13. They are based on a consensus methodology and use a modified Nominal Group Technique to produce a series of sequential steps to build consensus. This structured approach ensures the narratives of users of services are heard and helps counter the ‘top-down’ medical model that can dominate healthcare services14–16. The aim of this pilot study was to establish a PSP across Greater Manchester to understand what aspects of oral health are considered important and to empower older people to develop the research agenda to improve primary, secondary and tertiary prevention.
Methods The study was reviewed and approved by the University of Manchester ethics committee on the 19th of December 2013 and was judged to be low risk (Project Reference 13281). This pilot study followed the Nominal Group Technique described by the James Lind Alliance and Viergever et al.17,18. Each participant reviews the items for discussion and presents their view. A shared ranking exercise is then undertaken, where appropriate, after further structured small group discussions. For this study, four preliminary meetings were held with the following groups (Fig. 1):
223
1. ‘Users’ – users of services, 2. ‘Carers’ – personal carers of relatives or spouses over the age of 65, 3. ‘Third Sector’ – those representing third sector organisations such as ‘older people’s’ charities and care home staff and 4. ‘Specialists’ – those with a specialist knowledge in one or more areas related to the topic, for example Dental Public Health, Dental Commissioners, Geriatricians and Gerodontics. Participants for groups one to three were identified through Age (UK), care home networks across Greater Manchester and via the Citizen Scientist project run by Salford Royal NHS Foundation Trust. Group four was identified by two of the authors, through their professional role within the NHS. Based on the Nominal Group Technique (described above)17,18, each group took part in a facilitated discussion about the importance of oral health, how NHS services should be organised to address the future needs of this group and where the future research priorities should lie. Each group was facilitated by one of the research team [PRB, LM and IAP] and explored the following questions: 1. What aspects of oral health are important for you now? 2. What aspects of oral health would be important to you as you lose your independence? 3. How should we best prevent dental disease in older people? 4. What does good dental care look like (as older people become increasingly dependent)? 5. What would you fear happening to your mouth that is, what negative outcomes would you want to avoid as you lose your independence? 6. What are the important research questions to ask? At the start of each meeting, the participants were asked to spend 20 min individually writing down their thoughts about the above questions. The facilitator then led the group discussion,
Figure 1 Organisation of the Priority Setting Partnership. © 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
224
P. Brocklehurst et al.
taking the questions one at a time. Each participant in turn was asked to present their thoughts and these were recorded on a flip chart. This was followed by a facilitated discussion to tease out the different comments and ideas presented and their underlying narrative. At the point when no new material emerged, the facilitator moved the discussion onto the next question. When question 6 was discussed (research priorities), the responses were ranked both verbally and using a counter system, although this process was not utilised in the specialist group, given their very different approach to this question. The views of the different groups were recorded using a digital recorder. These were used to create audio files and were transcribed verbatim into text documents. In addition to recording the views of participants for each question, a coding frame was developed for thematic analysis19. This was to ensure that no important information was lost from the transcripts and enabled an inductive and collective view to be developed across the four groups. To facilitate this, three of the four researchers (LM, JG and PRB) immersed themselves in the data by reading and re-reading the transcripts. Highlighted phrases were used to develop the coding frame14 and overarching themes where then developed from the coded transcripts by organising them into clusters based on the similarity of their meaning14. These were then checked against the coded extracts and the raw data to ensure that they formed a coherent narrative and were representative of what the participants were trying to convey. Following the first stage of PSP meetings (users, carers, third sector and specialists), two or three members of each group were asked to participate in a final meeting to review the collated information and prioritise the research agenda, taking everyone’s views into account. This meeting was facilitated and led by a member of the ‘user’ group to ensure that the results of the PSP were grounded in the service user perspective and were not unduly influenced by the researchers or the specialists. The views of each preceding group were highlighted question by question, discussed, refined and then placed into a list of priorities.
cared for spouses who were aged over 65 years of age. In the ‘Third Sector’ group, there were representatives from Age UK, the Stroke Association (92), the Alzheimer’s Society and a residential nursing home. The ‘Specialists’ group comprised of a Geriatrician with special responsibility for community care, a Consultant in Dental Public Health, a Consultant in Restorative Dentistry with a special interest in Gerodontics, a Dental Commissioner, the Chair of the Local Professional Network and two academics interested in Health Services Research for older people. The research priorities highlighted by the different groups are detailed in Table 1. The specialists group results are presented separately, as many came with preconceived ideas for a research agenda and were reluctant to prioritise them. Salient quotes made by the four groups are presented below, and for clarity, these have been collated according to the original questions that were asked. Two main themes emerged from the thematic analysis (Table 2): ‘well-being’ and ‘services’. Within the former theme, three codes were identified: ‘being pain free and functioning’, ‘maintaining dignity and self-respect’ and ‘independence and decline’. For the latter, four codes were identified: ‘service organisation and access’, ‘cost’, ‘communication’ and ‘planning for failure’. Q1: What aspects of oral health are important for you now? Most comments related to being pain free, being able to function and maintaining self-care where possible: . . ..we want to be pain free. Because there’s nothing as bad as toothache. . .. [User] . . ..the ability to take care of your teeth is very important, isn’t it, as you get older. . .. [User]
Maintaining appearance was also key; many people wanting to continue their self-care practices that they had worked hard to maintain over their lifetime: . . ..I think teeth are quite important, because first of all for your dignity, you want to look after yourself and look nice, and second of all to be able to eat the correct foods, and that keeps you health[y]. . .. [User]
Results In the ‘Users’ group, there were 11 participants, seven of whom were female. Nine were aged 65 years of age or older, and two were between 60 and 65 years of age. In the ‘Carers’ group, there were six people, five being female. They all
Q2: What aspects of oral health would be important to you if you began to lose your independence? Again, avoiding pain and maintaining function were seen as very important, along with dignity and self-respect:
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
Older people and oral health
225
Table 1 Research priorities from the Priority Setting Partnership.
Priority identified
Users
Carers
Third sector
Final Consensus Group
Improve access to services for older people (including the use of skill mix) Improve access to client appropriate information on oral self-care Manage the transition as dependency increases Identify key issues for older people from their perspective Identify the training needs for the dental profession Identify ‘best practice’ in the prevention and treatment of oral diseases for older people Understand the training needs of carers and how can they be improved Assess the oral health needs of the aging population to determine the scope and size of the problem Key questions raised by the Specialists Group:
1st
1st
3rd
4th
2nd
2nd
2nd
5th
• • • • • • • •
3rd
4th 3rd
3rd 4th 4th
1st 2nd
5th
2nd 1st 6th
2nd
5th
What do older people want? What are the predictors of future decline? How do we promote the importance of oral health? What service would be the most efficient use of resources? How should we be financing care? How do we get dentists to think beyond the here and now? How do we plan for failure? Why can’t dentistry be part of advanced care planning?
Table 2 Coding frame for the Priority Setting Partnership. Theme
Code
Example
Well-being
Pain free and functioning
. . ..I mean obviously the aesthetic value is important, but obviously not as important as the functionality issues. . .. . . ..it’s self-respect and self esteem, and you do care that you’re not seen as somebody who neglects themselves. . .. . . ..I think that just because they’ve got dementia doesn’t mean that they don’t want a good quality of life and the way they look. . .. . . ..I think the provision of mobile units, if you’re in a care home for instance, then you need somebody to come to you. . . . . ..you do have older people who are not on benefits, who are restricted with their money. . .. . . ..going to the dentist is probably way down on their list. . .. . . ..I like to know what’s happening and what I should do. . .. . . ... . ..I mean, I think restorative certainly in the last 10/15 years is about planning for failure. What happens? What are you going to do? How are you going to manage. . ..
Dignity and self-respect Independence and decline
Services
Service organisation and access Cost
Communication Planning for failure
. . ..I hope if I was ga-ga. . .... . .somebody would still try and look after my teeth, because even if you’ve got behavioral problems you still have got to eat. . .. . . ..I would still hope that people would look after my teeth or keep my mouth fresh anyway. . .. [User] . . ..ability to eat I suppose, really, isn’t it?. . .. [Carer]
While the need for good oral hygiene was recognised by all groups, the difficulty in providing this, especially in frail adults, was raised: . . ..you’ve got 15 min to go in and deal with this person, and not only for that person. [Teeth are] not going to be a priority. . ... . . ..their loved ones and
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
226
P. Brocklehurst et al. their relatives would notice more if you’d not shaved them than if you had brushed their teeth or not, to be honest. . .. [Third Sector]
Prevention and planning for failure were considered important by the specialists group: . . ..I mean, I think restorative certainly in the last 10/15 years is about planning for failure. What happens? What are you going to do? How are you going to manage. . .. [Specialist]
Q3: How should we best prevent dental disease in older people? Good communication and the provision of information were seen as two key issues: .. . .when I was having a lot of teeth trouble I googled it, I looked it up, there was no research, no advice, no information about how to look after your teeth. . .. [User]
Access was another important point raised by the groups: . . ..the important thing is access to a dentist. Because you still have people who cannot access a dentist. . .. [Carer]
In addition, a number of participants suggested the possibility of screening older people at key life stages to promote ‘healthy ageing’ and identify those whose oral health may be starting to deteriorate. . . ..maybe you could have two systems then where you automatically get assessed when you’re 50. At 50 you get an invite to have this screening. . .. [User]
Q4: What does good dental care look like? Cost and access were important to users, despite the subsidised NHS provision in England. . . ..Cost. I think that’s an important aspect of oral health. . ... [User] . . ..I think the provision of mobile units, if you’re in a care home for instance, then you need somebody to come to you. . .. [User]
Primary and secondary prevention was again identified as being key. . . ..surely more effort by the NHS should be put into prevention elements, because that surely saves money at the other end. . .. [User]
The need to adopt a tailored approach to promote personalised care was also mentioned: . . ..a lot of our clients can’t communicate and can’t verbalise and are very incapacitated. So I would be more concerned about people being aware of their clinical needs in order to be able to treat them. . .. [Third Sector] . . . It’s about tailoring to individual needs, so you listen to what people want. . .. [Specialist]
Q5: What would you fear happening to your mouth? The loss of teeth was the most common concern: . . ..I also fear that dentists don’t realise that as you get older you want to retain your teeth and you’re not happy just to settle for false teeth. . .. [User]
Discussion The top three research priorities identified by the final group were to: (i) identify ‘best practice’ in the prevention and treatment of oral diseases for older people, (ii) identify the training needs for the dental profession and (iii) understand the key issues for older people from their perspective. Improving access to services, the provision of client appropriate information and the need for effective primary and secondary prevention were also articulated. These highlight the importance of a life course approach and the need for care pathways to identify and manage individuals who are becoming increasingly dependent and vulnerable4,20. By identifying individuals at any early stage of dependency, a structured approach to prevention can be undertaken that involves both a well-described self-care plan and professionally delivered therapies. In similarity to the work of Nielson et al., there was a strong articulated desire amongst the participants to maintain oral health. This was seen as an important component of autonomy, self-control and self-worth21. The importance of maintaining appearance and dignity was also articulated and concurs with earlier qualitative studies, especially amongst the more agile and younger cohorts of the ageing population21. The importance of access to services is more equivocal in the literature. Despite the increase in the provision of domiciliary care in developed countries22,23, questions have been raised about the cost-effectiveness of mobile service provision21. With the primary aim of dental care being to keep people free of oral pain and discomfort, the provision of appropriate primary and secondary prevention appears to remain critical, particularly the provision of appropriate evidence-based information and patient-centred communication24,25. Utilising all the dental workforce, including non-dentists, would appear to be important to consider. The strength of this study is that it provided an opportunity to involve older people in the development of the research agenda in the UK, ensuring that priorities were grounded in the experience of older people. Ensuring that an older
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
Older people and oral health
person chaired the final consensus group also avoided a ‘top-down’ or ‘medical model’ approach14–16 and ensured that potential barriers to achieving consensus, like pre-conceived agendas from the specialist group, could be circumvented. As such, the study has started a process of examining how ‘healthy ageing’ can be promoted over the life course and how health and longterm care systems could be made fit for ageing populations10,11. The weakness of this study was that it was confined to a relatively small number of ‘Users’ and ‘Carers’ from a specific geographical area. This could be addressed by undertaking further qualitative research and utilising consensus methodologies to improve the generalisability and representativeness of the findings. For example, further interviews could be undertaken and these could help inform a Discrete Choice Experiment that could be distributed nationally. It also raises an opportunity to improve Patient and Public Involvement in the area and develop user researchers, like the Citizen Scientist project in Salford, Greater Manchester26. However, it is clear that primary and secondary prevention is a key and that tertiary prevention should account for the perspective of the patient and the potential loss of independence in the future. The literature is scant in respect of the former, with no systematic reviews to help determine the relative efficacy of the different preventive approaches that could be undertaken20. It is clear that this should be addressed as a priority. It is also evident from this initial study that identifying training needs for dental professionals and ensuring future services are fit-for-purpose are also important. In respect of the latter, the recent changes in the United
References 1. Global Health and Aging. (2014) Available at: http://www.who.int/ ageing/publications/global_health/ en/ (last accessed 12 August 2014). 2. Age (UK). (2014) Available at: http://www.ageuk.org.uk (last accessed 12 August 2014). 3. World Population Prospects: The 2010 Revision. Available at: http:// esa.un.org/unpd/wpp (last accessed 12 August 2014). 4. Pretty IA. The life course, care pathways and elements of vulnerability. A picture of health needs in a vulnerable population. Gerodontology 2014; 31 (Suppl. 1): 1–8.
227
Kingdom to Dental Care Professionals’ Scope of Practice and their ability to now see patients directly could present an opportunity to design a service for a future healthcare market that is built on both expressed and normative need. The need to focus on expressed need is important. Some of the specialist group came with fixed ideas based on their particular clinical orientation. This has the potential of acting as a barrier to the improvement of services, as existing paradigms do not always account for the view of the service user. This was mitigated in part in this study, with one of the ‘user’ group acting as the Chair in the final meeting. This grounded the perspective taken and ensured an inductive approach to counter the ‘top-down’ medical model that can so easily dominate the planning of healthcare services14–16. This can be further mitigated by ensuring that users of services are also at the forefront of the development of metrics for subsequent research and service design, given that ‘what gets measured is what gets done’15.
Acknowledgements The research team would like to thank the University of Manchester for the small grant (£2000) that helped to support this study from the ESRC Seed-Corn Fund. They would also like to thank Lucy O’Malley, Jess Zadik and Jo Macey for their contributions to the research task.
Conflict of interest No conflict of interests is known.
5. Adult Dental Health Survey. (2014) Available at: http://www.ic. nhs.uk/statistics-and-data-collections/ primary-care/dentistry/adult-dentalhealth-survey-2009–summary-reportand-thematic-series (last accessed 12 August 2014). 6. NIHR ENRICH. (2014) Available at: http://www.enrich.dendron.nihr. ac.uk/ (last accessed 12 August 2014). 7. Gerritsen AE, Allen PF, Witter DJ, Bronkhorst EM, Creugers NH. Tooth loss and oral healthrelated quality of life: a systematic review and meta-analysis. Health Qual Life Outcomes 2010; 8: 126.
8. Walls AW, Steele JG. The relationship between oral health and nutrition in older people. Mech Ageing Dev 2004; 125: 853–7. 9. Moynihan PJ. The relationship between nutrition and systemic and oral well-being in older people. J Am Dent Assoc 2007; 138: 493–7. 10. Active ageing. A policy framework. Geneva, World Health Organization. Available at: http://whqlibdoc.who.int/hq/2002/WHO_NMH_ NPH_02.8.pdf (last accessed 12 August 2014). 11. Policies and priority interventions for healthy ageing. Available at: http:// www.euro.who.int/en/health-topics/ Life-stages/healthy-ageing/publica-
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
228
12.
13.
14.
15.
16.
P. Brocklehurst et al.
tions/2012/policies-and-priority-interventions-for-healthy-ageing (last acc essed 12 August 2014). Melzer D, Tavakoly B, Winder R, Richards S, Gericke C, Lang I. Health Care Quality for an Active Later Life. Improving Quality of Prevention and Treatment Through Information: England 2005 to 2012. Exeter: Age UK, 2012. Chalmers I, Atkinson P, Fenton M, Firkins L, Crowe S, Cowan K. Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003– 2013. J R Soc Med 2013; 106: 482– 91. Abma TA, Nierse CJ, Widdershoven GAM. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qual Health Res 2009; 19: 401–15. Reed J, Weiner R, Cook G. Partnership research with older people – moving towards making the rhetoric a reality. J Clin Nurs 2004; 13 (Suppl. 1): 3–10. Mitton C, Smith N, Peacock S, Evoy B, Abelson J. Public participation in health care priority setting: a scoping review. Health Policy 2009; 91: 219–28.
17. James Lind Alliance. (2014) Available at: http://www.lindalliance.org (last accessed 12 August 2014). 18. Viergever RF, Olifson S, Ghaffar A, Terry RF. A checklist for health research priority setting: nine common themes of good practice. Health Research Policy and Systems 2010; 8: 36–45. 19. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77–101. 20. Pretty IA, Ellwood RP, Lo ECM, MacEntee MI, Muller F, Rooney E et al. The Seattle Care Pathway for securing oral health in older patients. Gerodontology 2014; 31 (Suppl. 1): 77–87. 21. Niesten D, van Mourik K, van der Sanden W. The impact of frailty on oral care behavior of older people: a qualitative study. BMC Oral Health 2013; 13: 61. 22. da Fonseca ACC, Montenegro FL. Assessment of mobile dental services in the State of Lower Austria, Austria. Gerodontology 2009; 26: 302–4. 23. Paley GA, Slack-Smith L, O’Grady M. Oral health care issues in aged care facilities in Western Australia: resident and family
caregiver views. Gerodontology 2009; 26: 97–104. 24. De Visschere L, de Baat C, De Meyer L, van der Putten GJ, Peeters B, Soderfelt B et al. The integration of oral health care into day-to-day care in nursing homes: a qualitative study. Gerodontology 2013; 2013 Jun 20. Doi 10.1111/ger.12062 [Epub ahead of print] 25. Yoon MN, Steele CM. Health care professionals’ perspectives on oral care for long-term care residents: nursing staff, speech-language pathologists and dental hygienists. Gerodontology 2012; 29: e525–35. 26. Citizen Scientist Project. (2014) Available at: http://www.citizenscientist.org.uk/research-opportunities/ dental-research/setting-priorities-forthe-dental-care-of-older-people/ (last accessed 12 August 2014).
Correspondence to: Paul R. Brocklehurst, Y Wern, Holyhead Road, Bangor, LL57 2PZ, UK. Tel.: 01248 388095 Fax: 01248 382229 E-mail: p.brocklehurst@bangor. ac.uk
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
Older people and oral health: setting a patient-centred research agenda Paul R. Brocklehurst1, Laura Mackay2, Joanna Goldthorpe2 and Iain A. Pretty2 1
NWORTH Clinical Trials Unit, Bangor University, UK; 2Dental Health Unit, Williams House, Manchester Science Park, Manchester, UK
doi:10.1111/ger.12199 Older people and oral health: setting a patient-centred research agenda Objective: The aim of this pilot study was to provide the opportunity to enable older people to prioritise the research agenda to improve their own oral health. Background: Little is known about the ageing population’s views about their oral health from their perspective. Priority Setting Partnerships (PSPs) incorporate users’ perspectives to prioritise research agendas and are based on a series of sequential steps to build consensus. This structured approach ensures their narrative and thoughts are heard and helps counter the ‘top-down’ medical model that can dominate healthcare services. Materials and methods: A PSP was undertaken with four key stakeholder groups: service users, carers, third sector and specialists. Six initial questions were posed to each group prior to a facilitated discussion led by one of the research team. Collective responses where then considered by a final consensus group. The views of the different groups were recorded, transcribed verbatim and underwent thematic analysis. Results: The top three research priorities identified by the final group were to: (i) identify ‘best practice’ in the prevention and treatment of oral diseases for older people, (ii) identify the training needs for the dental profession and (iii) understand the key issues for older people from their perspective. Improving access to services, the importance of client appropriate information and the need for effective primary and secondary prevention were also articulated. Conclusion: Asking older people to prioritise the research agenda proved to be a positive experience. Key issues related to improving communication and the availability of appropriate evidence-based information on primary, secondary and tertiary prevention. Keywords: elderly, oral health, co-design. Accepted 3 April 2015
Introduction The number of ‘older people’ (aged 65 or older) is projected to grow to 1.5 billion by 2050 worldwide1. Half of the population in the United Kingdom (UK) will be over 50 years of age by 2050, 25% classed as ‘older people’ and the ‘oldest old’ (over 85 years) are projected to increase by 351%2,3. Access to care for the elderly becomes increasingly problematic with increasing age, and unlike previous generations, 94% will have their own teeth4,5. Many of the ageing population will eventually reside in care homes or will be cared for at home as their mobility and independence decrease further6. 222
Oral health impacts on the quality of life of older people and can also impact upon their general health7–9. The World Health Organization has called for a paradigm shift towards the concept of ageing10 and has developed a set of priorities based on four strategic areas: ‘healthy ageing over the life course’, ‘the design of health and long-term care systems that are fit for ageing populations’, ‘supportive age-friendly environments’ and ‘strengthening the research and the evidence base’11. Despite this, little is known about the ageing population’s views about their oral health from their perspective and what promotes ‘healthy ageing’. There also remains substantial scope for improving the quality of care for older people and
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
Older people and oral health
reducing health inequalities12. Whilst research has traditionally been based on the interests of researchers and those who fund them, there has been a shift in the UK recently to ensure that funding streams are influenced by the major stakeholders and beneficiaries of the emerging evidence base: patients, service users and their carers. Priority Setting Partnerships (PSPs) incorporate users’ perspectives to help prioritise research agendas and ensure they are patient-centred13,14. PSPs were developed by the James Lind Alliance in the UK to help mitigate the asymmetrical relationships that often exist between researchers and users of services13. They are based on a consensus methodology and use a modified Nominal Group Technique to produce a series of sequential steps to build consensus. This structured approach ensures the narratives of users of services are heard and helps counter the ‘top-down’ medical model that can dominate healthcare services14–16. The aim of this pilot study was to establish a PSP across Greater Manchester to understand what aspects of oral health are considered important and to empower older people to develop the research agenda to improve primary, secondary and tertiary prevention.
Methods The study was reviewed and approved by the University of Manchester ethics committee on the 19th of December 2013 and was judged to be low risk (Project Reference 13281). This pilot study followed the Nominal Group Technique described by the James Lind Alliance and Viergever et al.17,18. Each participant reviews the items for discussion and presents their view. A shared ranking exercise is then undertaken, where appropriate, after further structured small group discussions. For this study, four preliminary meetings were held with the following groups (Fig. 1):
223
1. ‘Users’ – users of services, 2. ‘Carers’ – personal carers of relatives or spouses over the age of 65, 3. ‘Third Sector’ – those representing third sector organisations such as ‘older people’s’ charities and care home staff and 4. ‘Specialists’ – those with a specialist knowledge in one or more areas related to the topic, for example Dental Public Health, Dental Commissioners, Geriatricians and Gerodontics. Participants for groups one to three were identified through Age (UK), care home networks across Greater Manchester and via the Citizen Scientist project run by Salford Royal NHS Foundation Trust. Group four was identified by two of the authors, through their professional role within the NHS. Based on the Nominal Group Technique (described above)17,18, each group took part in a facilitated discussion about the importance of oral health, how NHS services should be organised to address the future needs of this group and where the future research priorities should lie. Each group was facilitated by one of the research team [PRB, LM and IAP] and explored the following questions: 1. What aspects of oral health are important for you now? 2. What aspects of oral health would be important to you as you lose your independence? 3. How should we best prevent dental disease in older people? 4. What does good dental care look like (as older people become increasingly dependent)? 5. What would you fear happening to your mouth that is, what negative outcomes would you want to avoid as you lose your independence? 6. What are the important research questions to ask? At the start of each meeting, the participants were asked to spend 20 min individually writing down their thoughts about the above questions. The facilitator then led the group discussion,
Figure 1 Organisation of the Priority Setting Partnership. © 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
224
P. Brocklehurst et al.
taking the questions one at a time. Each participant in turn was asked to present their thoughts and these were recorded on a flip chart. This was followed by a facilitated discussion to tease out the different comments and ideas presented and their underlying narrative. At the point when no new material emerged, the facilitator moved the discussion onto the next question. When question 6 was discussed (research priorities), the responses were ranked both verbally and using a counter system, although this process was not utilised in the specialist group, given their very different approach to this question. The views of the different groups were recorded using a digital recorder. These were used to create audio files and were transcribed verbatim into text documents. In addition to recording the views of participants for each question, a coding frame was developed for thematic analysis19. This was to ensure that no important information was lost from the transcripts and enabled an inductive and collective view to be developed across the four groups. To facilitate this, three of the four researchers (LM, JG and PRB) immersed themselves in the data by reading and re-reading the transcripts. Highlighted phrases were used to develop the coding frame14 and overarching themes where then developed from the coded transcripts by organising them into clusters based on the similarity of their meaning14. These were then checked against the coded extracts and the raw data to ensure that they formed a coherent narrative and were representative of what the participants were trying to convey. Following the first stage of PSP meetings (users, carers, third sector and specialists), two or three members of each group were asked to participate in a final meeting to review the collated information and prioritise the research agenda, taking everyone’s views into account. This meeting was facilitated and led by a member of the ‘user’ group to ensure that the results of the PSP were grounded in the service user perspective and were not unduly influenced by the researchers or the specialists. The views of each preceding group were highlighted question by question, discussed, refined and then placed into a list of priorities.
cared for spouses who were aged over 65 years of age. In the ‘Third Sector’ group, there were representatives from Age UK, the Stroke Association (92), the Alzheimer’s Society and a residential nursing home. The ‘Specialists’ group comprised of a Geriatrician with special responsibility for community care, a Consultant in Dental Public Health, a Consultant in Restorative Dentistry with a special interest in Gerodontics, a Dental Commissioner, the Chair of the Local Professional Network and two academics interested in Health Services Research for older people. The research priorities highlighted by the different groups are detailed in Table 1. The specialists group results are presented separately, as many came with preconceived ideas for a research agenda and were reluctant to prioritise them. Salient quotes made by the four groups are presented below, and for clarity, these have been collated according to the original questions that were asked. Two main themes emerged from the thematic analysis (Table 2): ‘well-being’ and ‘services’. Within the former theme, three codes were identified: ‘being pain free and functioning’, ‘maintaining dignity and self-respect’ and ‘independence and decline’. For the latter, four codes were identified: ‘service organisation and access’, ‘cost’, ‘communication’ and ‘planning for failure’. Q1: What aspects of oral health are important for you now? Most comments related to being pain free, being able to function and maintaining self-care where possible: . . ..we want to be pain free. Because there’s nothing as bad as toothache. . .. [User] . . ..the ability to take care of your teeth is very important, isn’t it, as you get older. . .. [User]
Maintaining appearance was also key; many people wanting to continue their self-care practices that they had worked hard to maintain over their lifetime: . . ..I think teeth are quite important, because first of all for your dignity, you want to look after yourself and look nice, and second of all to be able to eat the correct foods, and that keeps you health[y]. . .. [User]
Results In the ‘Users’ group, there were 11 participants, seven of whom were female. Nine were aged 65 years of age or older, and two were between 60 and 65 years of age. In the ‘Carers’ group, there were six people, five being female. They all
Q2: What aspects of oral health would be important to you if you began to lose your independence? Again, avoiding pain and maintaining function were seen as very important, along with dignity and self-respect:
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
Older people and oral health
225
Table 1 Research priorities from the Priority Setting Partnership.
Priority identified
Users
Carers
Third sector
Final Consensus Group
Improve access to services for older people (including the use of skill mix) Improve access to client appropriate information on oral self-care Manage the transition as dependency increases Identify key issues for older people from their perspective Identify the training needs for the dental profession Identify ‘best practice’ in the prevention and treatment of oral diseases for older people Understand the training needs of carers and how can they be improved Assess the oral health needs of the aging population to determine the scope and size of the problem Key questions raised by the Specialists Group:
1st
1st
3rd
4th
2nd
2nd
2nd
5th
• • • • • • • •
3rd
4th 3rd
3rd 4th 4th
1st 2nd
5th
2nd 1st 6th
2nd
5th
What do older people want? What are the predictors of future decline? How do we promote the importance of oral health? What service would be the most efficient use of resources? How should we be financing care? How do we get dentists to think beyond the here and now? How do we plan for failure? Why can’t dentistry be part of advanced care planning?
Table 2 Coding frame for the Priority Setting Partnership. Theme
Code
Example
Well-being
Pain free and functioning
. . ..I mean obviously the aesthetic value is important, but obviously not as important as the functionality issues. . .. . . ..it’s self-respect and self esteem, and you do care that you’re not seen as somebody who neglects themselves. . .. . . ..I think that just because they’ve got dementia doesn’t mean that they don’t want a good quality of life and the way they look. . .. . . ..I think the provision of mobile units, if you’re in a care home for instance, then you need somebody to come to you. . . . . ..you do have older people who are not on benefits, who are restricted with their money. . .. . . ..going to the dentist is probably way down on their list. . .. . . ..I like to know what’s happening and what I should do. . .. . . ... . ..I mean, I think restorative certainly in the last 10/15 years is about planning for failure. What happens? What are you going to do? How are you going to manage. . ..
Dignity and self-respect Independence and decline
Services
Service organisation and access Cost
Communication Planning for failure
. . ..I hope if I was ga-ga. . .... . .somebody would still try and look after my teeth, because even if you’ve got behavioral problems you still have got to eat. . .. . . ..I would still hope that people would look after my teeth or keep my mouth fresh anyway. . .. [User] . . ..ability to eat I suppose, really, isn’t it?. . .. [Carer]
While the need for good oral hygiene was recognised by all groups, the difficulty in providing this, especially in frail adults, was raised: . . ..you’ve got 15 min to go in and deal with this person, and not only for that person. [Teeth are] not going to be a priority. . ... . . ..their loved ones and
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
226
P. Brocklehurst et al. their relatives would notice more if you’d not shaved them than if you had brushed their teeth or not, to be honest. . .. [Third Sector]
Prevention and planning for failure were considered important by the specialists group: . . ..I mean, I think restorative certainly in the last 10/15 years is about planning for failure. What happens? What are you going to do? How are you going to manage. . .. [Specialist]
Q3: How should we best prevent dental disease in older people? Good communication and the provision of information were seen as two key issues: .. . .when I was having a lot of teeth trouble I googled it, I looked it up, there was no research, no advice, no information about how to look after your teeth. . .. [User]
Access was another important point raised by the groups: . . ..the important thing is access to a dentist. Because you still have people who cannot access a dentist. . .. [Carer]
In addition, a number of participants suggested the possibility of screening older people at key life stages to promote ‘healthy ageing’ and identify those whose oral health may be starting to deteriorate. . . ..maybe you could have two systems then where you automatically get assessed when you’re 50. At 50 you get an invite to have this screening. . .. [User]
Q4: What does good dental care look like? Cost and access were important to users, despite the subsidised NHS provision in England. . . ..Cost. I think that’s an important aspect of oral health. . ... [User] . . ..I think the provision of mobile units, if you’re in a care home for instance, then you need somebody to come to you. . .. [User]
Primary and secondary prevention was again identified as being key. . . ..surely more effort by the NHS should be put into prevention elements, because that surely saves money at the other end. . .. [User]
The need to adopt a tailored approach to promote personalised care was also mentioned: . . ..a lot of our clients can’t communicate and can’t verbalise and are very incapacitated. So I would be more concerned about people being aware of their clinical needs in order to be able to treat them. . .. [Third Sector] . . . It’s about tailoring to individual needs, so you listen to what people want. . .. [Specialist]
Q5: What would you fear happening to your mouth? The loss of teeth was the most common concern: . . ..I also fear that dentists don’t realise that as you get older you want to retain your teeth and you’re not happy just to settle for false teeth. . .. [User]
Discussion The top three research priorities identified by the final group were to: (i) identify ‘best practice’ in the prevention and treatment of oral diseases for older people, (ii) identify the training needs for the dental profession and (iii) understand the key issues for older people from their perspective. Improving access to services, the provision of client appropriate information and the need for effective primary and secondary prevention were also articulated. These highlight the importance of a life course approach and the need for care pathways to identify and manage individuals who are becoming increasingly dependent and vulnerable4,20. By identifying individuals at any early stage of dependency, a structured approach to prevention can be undertaken that involves both a well-described self-care plan and professionally delivered therapies. In similarity to the work of Nielson et al., there was a strong articulated desire amongst the participants to maintain oral health. This was seen as an important component of autonomy, self-control and self-worth21. The importance of maintaining appearance and dignity was also articulated and concurs with earlier qualitative studies, especially amongst the more agile and younger cohorts of the ageing population21. The importance of access to services is more equivocal in the literature. Despite the increase in the provision of domiciliary care in developed countries22,23, questions have been raised about the cost-effectiveness of mobile service provision21. With the primary aim of dental care being to keep people free of oral pain and discomfort, the provision of appropriate primary and secondary prevention appears to remain critical, particularly the provision of appropriate evidence-based information and patient-centred communication24,25. Utilising all the dental workforce, including non-dentists, would appear to be important to consider. The strength of this study is that it provided an opportunity to involve older people in the development of the research agenda in the UK, ensuring that priorities were grounded in the experience of older people. Ensuring that an older
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
Older people and oral health
person chaired the final consensus group also avoided a ‘top-down’ or ‘medical model’ approach14–16 and ensured that potential barriers to achieving consensus, like pre-conceived agendas from the specialist group, could be circumvented. As such, the study has started a process of examining how ‘healthy ageing’ can be promoted over the life course and how health and longterm care systems could be made fit for ageing populations10,11. The weakness of this study was that it was confined to a relatively small number of ‘Users’ and ‘Carers’ from a specific geographical area. This could be addressed by undertaking further qualitative research and utilising consensus methodologies to improve the generalisability and representativeness of the findings. For example, further interviews could be undertaken and these could help inform a Discrete Choice Experiment that could be distributed nationally. It also raises an opportunity to improve Patient and Public Involvement in the area and develop user researchers, like the Citizen Scientist project in Salford, Greater Manchester26. However, it is clear that primary and secondary prevention is a key and that tertiary prevention should account for the perspective of the patient and the potential loss of independence in the future. The literature is scant in respect of the former, with no systematic reviews to help determine the relative efficacy of the different preventive approaches that could be undertaken20. It is clear that this should be addressed as a priority. It is also evident from this initial study that identifying training needs for dental professionals and ensuring future services are fit-for-purpose are also important. In respect of the latter, the recent changes in the United
References 1. Global Health and Aging. (2014) Available at: http://www.who.int/ ageing/publications/global_health/ en/ (last accessed 12 August 2014). 2. Age (UK). (2014) Available at: http://www.ageuk.org.uk (last accessed 12 August 2014). 3. World Population Prospects: The 2010 Revision. Available at: http:// esa.un.org/unpd/wpp (last accessed 12 August 2014). 4. Pretty IA. The life course, care pathways and elements of vulnerability. A picture of health needs in a vulnerable population. Gerodontology 2014; 31 (Suppl. 1): 1–8.
227
Kingdom to Dental Care Professionals’ Scope of Practice and their ability to now see patients directly could present an opportunity to design a service for a future healthcare market that is built on both expressed and normative need. The need to focus on expressed need is important. Some of the specialist group came with fixed ideas based on their particular clinical orientation. This has the potential of acting as a barrier to the improvement of services, as existing paradigms do not always account for the view of the service user. This was mitigated in part in this study, with one of the ‘user’ group acting as the Chair in the final meeting. This grounded the perspective taken and ensured an inductive approach to counter the ‘top-down’ medical model that can so easily dominate the planning of healthcare services14–16. This can be further mitigated by ensuring that users of services are also at the forefront of the development of metrics for subsequent research and service design, given that ‘what gets measured is what gets done’15.
Acknowledgements The research team would like to thank the University of Manchester for the small grant (£2000) that helped to support this study from the ESRC Seed-Corn Fund. They would also like to thank Lucy O’Malley, Jess Zadik and Jo Macey for their contributions to the research task.
Conflict of interest No conflict of interests is known.
5. Adult Dental Health Survey. (2014) Available at: http://www.ic. nhs.uk/statistics-and-data-collections/ primary-care/dentistry/adult-dentalhealth-survey-2009–summary-reportand-thematic-series (last accessed 12 August 2014). 6. NIHR ENRICH. (2014) Available at: http://www.enrich.dendron.nihr. ac.uk/ (last accessed 12 August 2014). 7. Gerritsen AE, Allen PF, Witter DJ, Bronkhorst EM, Creugers NH. Tooth loss and oral healthrelated quality of life: a systematic review and meta-analysis. Health Qual Life Outcomes 2010; 8: 126.
8. Walls AW, Steele JG. The relationship between oral health and nutrition in older people. Mech Ageing Dev 2004; 125: 853–7. 9. Moynihan PJ. The relationship between nutrition and systemic and oral well-being in older people. J Am Dent Assoc 2007; 138: 493–7. 10. Active ageing. A policy framework. Geneva, World Health Organization. Available at: http://whqlibdoc.who.int/hq/2002/WHO_NMH_ NPH_02.8.pdf (last accessed 12 August 2014). 11. Policies and priority interventions for healthy ageing. Available at: http:// www.euro.who.int/en/health-topics/ Life-stages/healthy-ageing/publica-
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
228
12.
13.
14.
15.
16.
P. Brocklehurst et al.
tions/2012/policies-and-priority-interventions-for-healthy-ageing (last acc essed 12 August 2014). Melzer D, Tavakoly B, Winder R, Richards S, Gericke C, Lang I. Health Care Quality for an Active Later Life. Improving Quality of Prevention and Treatment Through Information: England 2005 to 2012. Exeter: Age UK, 2012. Chalmers I, Atkinson P, Fenton M, Firkins L, Crowe S, Cowan K. Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003– 2013. J R Soc Med 2013; 106: 482– 91. Abma TA, Nierse CJ, Widdershoven GAM. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qual Health Res 2009; 19: 401–15. Reed J, Weiner R, Cook G. Partnership research with older people – moving towards making the rhetoric a reality. J Clin Nurs 2004; 13 (Suppl. 1): 3–10. Mitton C, Smith N, Peacock S, Evoy B, Abelson J. Public participation in health care priority setting: a scoping review. Health Policy 2009; 91: 219–28.
17. James Lind Alliance. (2014) Available at: http://www.lindalliance.org (last accessed 12 August 2014). 18. Viergever RF, Olifson S, Ghaffar A, Terry RF. A checklist for health research priority setting: nine common themes of good practice. Health Research Policy and Systems 2010; 8: 36–45. 19. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77–101. 20. Pretty IA, Ellwood RP, Lo ECM, MacEntee MI, Muller F, Rooney E et al. The Seattle Care Pathway for securing oral health in older patients. Gerodontology 2014; 31 (Suppl. 1): 77–87. 21. Niesten D, van Mourik K, van der Sanden W. The impact of frailty on oral care behavior of older people: a qualitative study. BMC Oral Health 2013; 13: 61. 22. da Fonseca ACC, Montenegro FL. Assessment of mobile dental services in the State of Lower Austria, Austria. Gerodontology 2009; 26: 302–4. 23. Paley GA, Slack-Smith L, O’Grady M. Oral health care issues in aged care facilities in Western Australia: resident and family
caregiver views. Gerodontology 2009; 26: 97–104. 24. De Visschere L, de Baat C, De Meyer L, van der Putten GJ, Peeters B, Soderfelt B et al. The integration of oral health care into day-to-day care in nursing homes: a qualitative study. Gerodontology 2013; 2013 Jun 20. Doi 10.1111/ger.12062 [Epub ahead of print] 25. Yoon MN, Steele CM. Health care professionals’ perspectives on oral care for long-term care residents: nursing staff, speech-language pathologists and dental hygienists. Gerodontology 2012; 29: e525–35. 26. Citizen Scientist Project. (2014) Available at: http://www.citizenscientist.org.uk/research-opportunities/ dental-research/setting-priorities-forthe-dental-care-of-older-people/ (last accessed 12 August 2014).
Correspondence to: Paul R. Brocklehurst, Y Wern, Holyhead Road, Bangor, LL57 2PZ, UK. Tel.: 01248 388095 Fax: 01248 382229 E-mail: p.brocklehurst@bangor. ac.uk
© 2015 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd, Gerodontology 2015; 32: 222–228
