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Frailty management Optimisation through EIP AHA Commitments and Utilisation of Stakeholders input [FOCUS] [664367] - Project
Project abstract

Our purpose is to critically reduce the burden of frailty in Europe by assisting those partners within the European Innovation Partnership for Active Healthy Ageing (EIPAHA) with commitments focusing on early diagnosis/screening and/or management of frailty to achieve scalability. We have selected EIPAHA because it constitutes a critical instrument for the EU and because it composes the widest representation of initiatives about frailty in Europe.
Our project offers both a service and a network. The service consists of evidence-based guidelines to critically help the selected group of partners to satisfactorily achieve their goals. The network intends to prolong the service in the long term.
To achieve that purpose (WP4) we will define the roadmap, in that we will i) describe the state of art (review of the scientific literature), ii) get a picture of the status of the affected commitments within EIPAHA (barriers, enablers, etc.), and iii) obtain information of the needs of stakeholders. With this real-world landscape in hand, WP5 will define indicators and use a scientifically sound method, comparative effectiveness research, to draw conclusions regarding the most adequate and customized approach to assist commitments in achieving success. Inequalities, cultural conditions or cross-border issues will be considered as representative of the diversity in Europe. Guidelines and toolkits will be issued with the perspective of sustainability. WP6 will constitute the “Platform for Knowledge Exchange” (PKE), which will both facilitate and perpetuate exchange between partners and stakeholders to achieve synergies and guide progression. PKE will act as a repository and as an instrument for dissemination too. WP7 will be a practical test to verify the usability and performance of guidelines in real EIPAHA commitments.
Relevance derives from the wide prevalence of frailty in Europe, consistently the focus throughout the work programme.

Summary of context, overal objectives, strategic, relevance and contribution of the action

## **WHAT DID WE DO?**

### *The background*

Ageing is a global phenomenon. The 2013 update of the World Health Organisation (WHO) has established life expectancy at 80 years for women and 73 years for men in the European Union (EU) (1). As a consequence, a total of 85 million European people are aged over 65 years, and it is thought that the number will double by 2060.

Ageing increases the risk for disease, dependency and poor quality of life. The European Innovation Partnership on Active and Healthy Ageing (EIPonAHA) represents a pivotal reaction of the European Commission (EC) to that challenge. The European Innovation Partnership on Active and Healthy Ageing (EIPonAHA) was created in 2012 (2) as a pilot initiative aiming at the promotion of healthy ageing through interdisciplinary and cross-sector approaches, and specifically aiming to reduce the gap between healthy life expectancy and actual life expectancy by 2 years.

The health programme of the EC has boosted prevention as a key strategy to manage the challenges of ageing. This is the context in which the FOCUS (Frailty management Optimisation through EIPAHA Commitments and Utilisation of Stakeholders input) project was born. FOCUS is a project financed by the Health Programme of the European Commission. It integrates 11 different partners (University of Valencia, EVERIS Spain SL, and ESAM SL, all the three in Spain; Roessingh Research and Development BV in the Netherlands; University of Wroclaw, in Poland; Aston University and Lancaster University in the United Kingdom; Fondazione IRCCS Ca’Granda and Istituto di Ricerche Farmacologiche Mario Negri, both in Italy; Escola Superior de Enfermagem, University of Coimbra, and University of Aveiro, both in Portugal).

Our research activities in FOCUS were strongly related with prevention of dependency, decline and poor quality of life in later life as we concentrated our attention on frailty, a crucial concept in that regard. Frailty is a syndrome that relates to individual vulnerability for developing adverse outcomes when exposed to a stressor (3,4). Therefore, the attention to frailty aims at identifying the most vulnerable citizens. This group of the population is expected to consist of individuals who will be most likely to experience ominous outcomes, including disease, dependency, hospitalisation, necessity for nursing home admittance or death. Given evidence on the malleability of frailty, paired with the limited intervention at present, it is clear that by concentrating active measures in frail individuals to improve the condition, societal gains in health and social care burden will be maximal.

### *FOCUS as a decisive step*

We conceived FOCUS to reduce the burden of frailty in Europe, but with a series of particularities. One was our special interest on EIPonAHA. Given that EIPonAHA includes a varied profile of stakeholders, another important feature of FOCUS was the consideration of their active participation. Therefore, the strategy to integrate those considerations into an effective reduction of frailty in FOCUS included:

- The synthesis and appraisal of the most consistent scientific evidence.
- The investigation of the views of different types of stakeholders, including frail and robust older adults in community and healthcare situations, carers, health and social care professionals, and policymakers.
- The categorisation and appraisal of Good Practices in the EIPonAHA portfolio guidelines and recommendations of conditions for success.
- The test of those guidelines in pilot clinical and community studies run in 5 different EIPonAHA settings across Europe. Specifically, 5 different countries, Spain, Poland, Italy, Portugal and the UK housed pilots that gave corresponding reports about how those guidelines performed in real world practice.
- But the roadmap of FOCUS also included more innovative measures. Specifically, FOCUS worked on disclosing how modern information and communication technology (ICT)

Methods and means

# **Methods and means: Work performed during the reporting period**

## The point now is **HOW DID WE DO THAT?**

Work to comprehensively respond to our aims and the much needed advance in the area of frailty and frailty interventions included an ambitious set of reviews of the existing scientific evidence, an endeavour which was well supported by our analysis of the reality of actual interventions in Europe via the EIPonAHA Good Practice portfolio. Crucially, the outcomes of these activities were synthesised with the involvement and input of a wide array of stakeholders, citizens, carers, policy makers, experts, academia, and companies, ensuring the involvement of people affected by frailty or with some responsibility for their care.

So, the first half of the project, between May 2015 and November 2016, concentrated on an extensive and meticulous review of the literature and of the EIPonAHA Good Practices. This enabled us to gain insight into both scientific reports of screening and interventions for frailty and also the implementation of these in the real world. This was completed with a direct survey to individuals responsible for the interventions featured in EIPonAHA portfolio to investigate barriers, facilitators and conditions for success, thus including direct contact with stakeholders.

To further explore the views of stakeholders, another review synthesised qualitative reports that had focused on the lived experience of frailty and frailty interventions from the points of view of frail older people, their carers, and health and social care professionals. We then used our findings to prepare further investigations of perceptions of frailty, frailty management and intervention with our own focus groups, with specific topic guides customised to each particular profile. These focus groups were conducted in three countries, UK, Poland and Italy, with the purpose of learning from the main actors: frail and robust older adults, the informal (family) carers, and health and social services staff.

Following the analysis of all the above work, we put together a summary particularly emphasising the main themes of concern that came out of the synthesis of qualitative reports and our own focus groups, but including the information on the success of specific types of frailty interventions for people even of very old age. We wanted to disseminate this to European policy makers and to have their response.

So, we interviewed representatives of different levels, from the European Commission to the regional level, but all with responsibility for health funding and organisational decisions and policy on frailty. We also interviewed specialists, who were selected from the direct and indirect contacts of each of the partners in FOCUS. Following our analysis of this qualitative data, we have disseminated the outcomes directly and also much more widely in a high profile published output (5).

In the course of all that intensive work we were able to select and validate a long list of valuable **indicators,** which were then used in the production of the **guidelines**. The guidelines were prepared with the use of a validated approach that included both the GRADE and the PICO methodologies. In addition to the guidelines on the types of interventions that work, we also produced a set of **recommendations for the success** of those interventions, for example, to improve adherence on the part of patients or staff, or to ensure an intervention could work in a particular organisational context.

#### *The test of the guidelines: preparation and execution*

A multi-centric feasibility study (described as a series of pilot studies) was prepared to test the guidelines. This approach is highly relevant to our cross-Europe scaling up aims, in that the performance of guidelines and recommendations was tested in different environments, with different protocols, and in five different Member States.

This included meticulous preparation of the t

Work performed during the reporting period


The answer to this question may be stratified in sections, according to the result profiles.

#### *Evidence to prepare the guidelines.*

The updated scientific evidence received the input from the real world and produced results in the form of a series of publications.

The principal papers were as follows: we completed a systematic review on the effectiveness of interventions to prevent pre-frailty and frailty progression in older adults (6). This article clarifies what types of interventions work to prevent or reduce frailty in the real world. The issue is crucial, of course, and it is a mandatory step in order to have evidence to allow for the most appropriate set of guidelines.

Another important paper has been a realistic review, which has been a critical step because this publication updates what works for whom and in which circumstances (7). The paper was another important source of information in the preparation of the guidelines. It brought together work from the systematic review (6), the umbrella review of screening tools for frailty (8), the survey of Good Practices (9), the metasynthesis of qualitative studies (10) and the focus group investigations (11).

#### *The guidelines*

This was a main outcome of FOCUS, a service that the consortium offered to society. The rich background of information made the preparation of guidelines one unique initiative, as both the stakeholders’ views and the comprehensive, critically reviewed, scientific evidence were incorporated in the analysis.

There was a meticulous process of identification, selection and validation of indicators, organised in a multidimensional framework, which were taken for characterisation and comparison. The validation involved a panel of 83 European experts from the health and social care sectors identified and invited by FOCUS partners. The entire process followed a methodology developed by University of Aveiro for the project. University of Aveiro led the process, working with Mario Negri and Policlinico Milano and contribution from other partners.

#### *The test of the guidelines*

After the completion of the 5 trials, results were subjected to a meticulous analysis to draw conclusions. The big question was about the performance of the guidelines. FOCUS investigators provided important conclusions about feasibility (with 4 sub-domains, practicality, usability, closeness and responsiveness) and satisfaction. All of them were ranked as high or very high in terms of appreciation of partners and end-users. Some quotes from participants:

From the pilot in Valencia, Spain:

*“I repeat it went very well. Suggestions I cannot give, I thought everything was great. Just tell you that it has been a fantastic experience. Thank you very much”.*

From the pilot in Birmingham, UK:

*“It prompted me to try and get fitter and get involved in more activities (…) talking about your diet and activities, it prompted me to do more than I was doing”.*

#### *One more step: medical economics analysis*

This has been a very ambitious attempt, in which both the technical support of RRD and EVERIS has boosted the tasks developed by ESAM. The challenge has been to produce evidence concerning cost-effectiveness in relation to frailty. This is an unexplored area, which is currently full of complexities to overcome.

Our analyses integrated a complex list of variables, including consumption of resources, health care utilisation and cost analyses, budget impact, and incremental cost-effectiveness ratio, which were matched to each frailty indicator. We detected some isolated findings, such as reduction in the number of visits to the GPs in groups allocated to the guidelines intervention. However, overall comparisons on economic effectiveness were not possible because of the heterogeneity of environments.

#### *The ICT support*

Two partners, Everis and RRD, worked together to produce the PKE and the PSU. The PKE is a m

The main output achieved so far and their potential impact and use by target group (including benefits)

# The main outputs achieved so far and their potential impact and use by the target group (including benefits)

Three main questions are relevant now:


The versatility of FOCUS guidelines, which proved to be beneficial in all the different circumstances, may become a tool for health professionals, social workers, and the end-user. The conclusions are important in terms of usability of the guidelines, demonstrating that they maintain their operability in the many varied settings of the real world. Additionally, our modelling of the impacts of change in frailty using a continuous variable as opposed to a categorical variable (using full range frailty “score” rather than categories of frail, pre-frail or not frail) enabled us to demonstrate that any reduction in frailty, even if tiny, has impacts on health and social care gains and on quality of life.

The PKE and the PSU may be of help as well. The PKE constitutes a resource capable of offering updated information and, at the same time, direct implication in the area of frailty. The PSU offers the ReQuest tool, a system that has already been tested in PERSSILAA, another European project. ReQuest is a tool with potential for scaling up.


European citizens are gaining life expectancy, even taking into account our varying geographies, cultures and economic variability. This affects all of us, no matter how old we are at present. The topic (frailty), and the FOCUS outcomes are important for us all. Specific important conclusions are:

1. Our updates from the scientific literature (systematic review, realistic review, umbrella review, etc.) unanimously confirm that the frailty status may be reversed to a less vulnerable profile, even to a robust status if frailty was not too advanced. This is a crucial message for you, your doctor, and your full family and community context. So, something can be done! Have a look at our video on . This is now available in seven European languages (12).
2. Again as a consequence of the evidence updating, and in consistence with our guidelines’ recommendations, it is clear that lifestyle plays an important role in maintaining a robust state. Physical activity and good nutrition are important tools in that regard, but so too are social and intellectual engagement and psychological robustness. Consequently, a great message is to keep fit, eat healthily and keep your brain active! Doing all this together with your friends and family is even better!
3. Because integrating these habits in your life is not always easy, you may check the guidelines and recommendations to get some ideas as to how to help the process of getting good habits. Appropriate strategies to integrate into good practices, or facilitators to make healthy lifestyles a standard reality, are found in the list of recommendations that go with the FOCUS guidelines, see Table 3 in the Realist Review [7].
4. The results of the feasibility trials (pilot studies) in FOCUS will further reinforce the conclusion about what you can use in your own contexts and how acceptable participants found the methods to be, in case you have any doubts.
5. Finally, you will have the technological platform in the two variants, the PKE and the PSU to support your endeavours to address frailty in your own life and in your professional contexts.


The answer is yes. You will be assured about the prospects for a healthier horizon if you make efforts to keep the guidelines recommendations. Maintaining attention on the FOCUS guidelines not only informs you what activities can improve robustness, but also suggests strategies that support your adherence to healthy lifestyle choices.

We are also hoping that professionals across Europe will be using these guidelines to inform their design of good interventions for their local populations. The g

Achieved outcomes compared to the expected outcomes

One of the main objectives of the project, the consolidation of evidence and corresponding publications, has been achieved, although our final papers are suffering the slow progression of acceptance and publication as is the rule for high quality scientific journal. As an example, the guidelines are a reality, available as a deliverable, but not yet as a publication, although the recommendations for success of the guidelines in a range of contexts is available in the Realist review [7]. However, the list of published papers already available is far in excess of our original expectations, which is testament to the rich set of findings and the industrious involvement of all partners.

Another area worth commenting is the analysis of stakeholders and of the commitments of EIPonAHA. It has been the FOCUS experience that the list of groups working on frailty in EIPonAHA was relatively limited (little more than 100 projects listed), and that some of them did not reply to the request to fill the questionnaires. This is a lesson in itself, which warns about the difference between the formal lists of partners and the real world. Even so, the list of experts who did respond attained a minimum threshold, which allowed for a reliable selection of indicators and useful knowledge sharing about what facilitated or provided barriers to successful operationalisation of frailty interventions.

The technological platform is a product that has been forced to be often re-adapted. While the technical design and fabrication were satisfactory at all stages, the strong competition from alternatives derived from other projects or by the own EC (The Health Policy Platform, for example) created difficulties for being sufficiently competitive.

Finally, the pilots were completed as they had been designed, with satisfactory outcomes. We found some difficulties in the health economics evaluation. Among the limiting factors was the fact that frailty is a variable in which changes are very difficult to translate into economical impact.

Dissemination and evaluation activities carried out so far and their major results

Dissemination has been huge, and has attained several forms:

We developed a website, which has been located within the PKE and PSU ([](

The FOCUS dissemination plan has been enriched with a new set of dissemination resources, the FOCUS Project Dissemination Toolkit, which includes the dissemination tools, and the Guide to the FOCUS Project Dissemination Toolkit tools.

One main asset of the project has been the scientific dissemination. As already mentioned, there are papers in scientific journals (10 in total and still some others in the pipeline, either in publication process (3) or in preparation (3)). There is also dissemination in academic conferences, workshops with healthcare practitioners and senior decision makers, and events to disseminate outcomes with older citizens who have taken part in the pilots, and many other examples.

Of interest, there is a series of videos in all the languages of the partners in FOCUS. They have been used as an easy system to transmit basic messages in an accessible manner. They have been uploaded to YouTube, giving a huge potential to be visible in many different environments worldwide.

The FOCUS Newsletters have become a regular document highlighting important activities by partners or related with FOCUS in one way or another. Also important, 4 workshops have completed the project meetings at each of the locations and have gathered a specialised set of participants from the whole array of stakeholders, involving their viewpoints at the various stages of the work, ensuring that the needs of potential end-users have been incorporated at every stage.

Other initiatives of interest include a long list of press briefings, often through the institutional press services of partners’ institutions, or through more general mass media dissemination channels, including radio or online. Also important to mention is a network of stakeholders who have registered to receive updates and access information regarding the outcomes, another important dissemination achievement of FOCUS.

Finally, a list of initiatives, as detailed in the FOCUS Dissemination Plan, has open channels and relationships that might be used in future actions. In this way, the potential of FOCUS dissemination may be maintained in the long run.

Start date: 01/05/2015
End date: 30/04/2018
Duration: 36 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 1 427 779,00
Portfolio: Ageing