Sleep apnea: towards precision medicine

18 Jan

Ferran Barbé

Obstructive sleep apnea is a chronic disorder characterised by recurrent episodes of a blockage of the upper airways during sleep which affects between 5% and 14% of adults from 30 to 70 years of age, mainly men. In addition, sleep apnea leads to a reduction of the intake of oxygen (hypoxia) during sleep. In order to counteract this lack of oxygen, the brain reacts by forcing a short awakening known as arousal which reactivates the muscles in the upper airway and allows air to pass through (reoxygenation).

These cycles of hypoxia-reoxygenation produce stress to the circulatory system and leads to an increase in the risk of cardiovascular, hypertensive, metabolic, cerebrovascular, or neoplastic diseases, and lastly, a risk of death. At the same time, the arousals prevent a person from having a good night’s rest, produce the feeling of tiredness and an excessive desire to sleep during the day, which is associated with an increase in road accident rates and a decrease in life quality.

A standardised approach in the treatment of sleep apnoea exists: the use of continuous positive airway pressure (CPAP) during the night in order to keep the upper airways open which helps the person rest.

However, treatment with CPAP shows contradictory results. On the one hand, it has been demonstrated that the use of a CPAP for at least 4h per night increases quality of life and reduces blood pressure among population groups with high blood pressure. In contrast, it has not been demonstrated that the use of CPAP reduces the risk of major cardiovascular events or deaths. Therefore, sleep apnea is a heterogeneous disorder and the use of CPAP is not equally effective with all patients. Which patients can benefit most from the treatment? Should all patients be treated in the same way?

We believe it is important to look for patients with sleep apnea profiles that can benefit from a treatment with CPAP. The creation of the PADRIS programme (Public Data Analysis for Health Research and Innovation Programme in Catalonia), whose aim it is to make related health data available to the scientific community to drive research, innovation and assessment in health, has given us the opportunity to be able to analyse all subjects with sleep apnea treated with CPAP in Catalonia. We are talking about 71,217 people, approximately 1% of the general population who were attended by the public health system in Catalonia (primary care, hospital care, social health and/or pharmacy) in the period 2012-2013.

To establish these profiles (that is, groups of patients having similarities with each other but at the same time very different from the remainder) the most frequent comorbidities of patients with sleep apnea have been taken into consideration as well as the clinically relevant comorbidities. Six different profiles of patients were identified among patients with sleep apnea and treated with CPAP in Catalonia.

 

Despite defining these six different patient profiles, we can safely say that the population of Catalonia receiving CPAP is divided into two large basic groups: on the one hand, old age patients, with a high mortality rate and a frequent use of resources, and on the other, patients with fewer comorbidities, a low mortality rate and an infrequent use of resources. You can read it in an article in Plos ONE.

Do both groups need to be treated in the same way? It seems not. In the group with fewer comorbidities, a low mortality rate and an infrequent use of resources, it seems that sleep apnea is the most important determinant in the prognosis of these patients and there is evidence that this would be the group that could most benefit from treatment with CPAP. In contrast, it seems that in the other group sleep apnoea is at a secondary level, given that the predominant diseases are more serious.

The study has allowed us to assess the association between treatment with CPAP and mortality; that is, whether more people die who are being treated with CPAP or whether more people die having the same comorbidities but without sleep apnea.

To be able to achieve this objective, for each patient treated with CPAP we looked for three people with similar characteristics but without sleep apnea. What we observed was surprising, namely that despite presenting a greater number of comorbidities, treatment with CPAP is associated with a decrease in mortality rate at a population level (Am J Crit Care Med 2018 press).

We now need to continue working to find out what occurs in each of the patient profiles. Having access to this volume of data helps us to make an estimate of the groups of patients with sleep apnoea that will benefit more with CPAP treatment and this means that we are getting closer and closer to precision medicine.

Diseases do not exist, ill people do

Post written by Ferran Barbé, Hospital Institut de Recerca Biomèdica de Lleida.

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Blog AQuAS Awards 2017

11 Jan

Today we are inaugurating the AQuAS Blog Awards 2017 to reward the most read post of the year.

In this first edition, the award was a contest between five finalists: Assumpció Mestre, Lluís Bohígas, Emili Vela, Paula Traver and Cristina Colls, as we explained a few days ago here.

The winner of the first edition is Emili Vela with the following post:

Congratulations Emili!

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Let’s begin the year…

4 Jan

We begin the year by giving thanks to all the people that have collaborated in the blog AQuAS during 2017: Laura Muñoz, Laia Domingo, Mercè Piqueras, Emili Vela, Xavier Serra-Picamal, Xavier Trabado, Angelina González-Viana, Andreu Segura, Daniel Chaverri, Miquel Pons, Luis Lobo, Glòria Ruiz, Neus Méndez, Toñi Parra, Jordi Fàbrega, Núria Radó, Paula Adam, Cristina Colls, Lluís Bohígas, Dolores Ruiz-Muñoz, Guillem López Casasnovas, Anna García-Altés, Òscar Solans, Paula Traver, Víctor M. Montori, Jean Patrick Mathieu, Rossana Alessandrello, Marc Fortes, Dolors Benítez, Ioan Arrizabalaga, Esther Vizcaino, Emmanuel Giménez, Johanna Caro, Assumpció González Mestre, Elisa Puigdomènech, Rosa Maria Vivanco, Ramon Gomis, Sònia Abilleira, Joan MV Pons and Toni Dedéu.

Many thanks to everybody!

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From Tokyo to Tarragona: connected health

28 Dec

Over the last few years, the number of medical applications for mobile phones or health apps has increased exponentially. Thus, in 2017, it is estimated that there are nearly 200.000 health apps on the market.

They are related to technological solutions that monitor data such as blood pressure, the steps we take, the minutes we run, our pulse, the calories we ingest and even whether we sleep well or badly. There are also mobile devices that can be synchronised with other devices such as a calculator of the levels of blood glucose.

Four years ago, the FDA published its guide on medical applications for mobile phones aimed at manufacturers. The regulatory agencies take into consideration aspects which could present a risk to users of a particular product; in the context of health apps, on the one hand, this refers to applications that function with a regulated medical instrument (for example, medical imaging) and on the other, to applications that function as a medical device (for example, ECG electrocardiograms for cardiovascular patients).

But what happens with the remainder of medical apps? The Agency for Health Quality and Assessment of Catalonia (AQuAS) has worked on a proposed theoretical framework to assess medical apps. It is important to identify what scales can be useful when assessing a health app in terms of scientific evidence, safety and aspects of privacy.

HTA agencies can play an active role in assessment as well as in the development of technological solutions. The role of the AQuAS is worthy of mention in its pilot experiences in different projects of connected health: PEGASO, centred on the promotion of healthy lifestyles among adolescents, DECIPHER, as a comprehensive solution to facilitate the geographic mobility of patients with chronic diseases and m-Resist, centred on schizophrenia and patients who have resistance to treatment.

In addition to these experiences, the AQuAS has recently signed an agreement of collaboration for the design and development of the mobile application Human-Castle, aimed at professionals and citizens. A delegation of Japanese health professionals from the company Kikkoman has been on an extended visit to the AQuAS with this objective in mind.

“It has been 25 years since Barcelona shared the human castle phenomenon with the rest of the world at the opening ceremony of the 1992 Barcelona Olympic Games. It is a historical coincidence that coincides with the birth of technological assessment in Catalonia two years later, in 1994. We have a considerable challenge ahead that could mean a change of paradigm, both sustainable and scalable.”

“If we bring all knowledge together and join forces, the probabilities of raising a human castle successfully will increase.”

These are two of the highlights of a brief article published in The Economist on this emerging Catalan-Japanese initiative which will probably become a reality in the setting of the upcoming Summer Olympics in 2020, officially known as The Games of the XXXII Olympiad, a sporting event which will take place between 24 July and 9 August, 2020, in the city of Tokyo.

It concerns a multidisciplinary and inclusive project that highlights the strength of the human castle phenomenon, Catalan architecture applied to the computing architecture of technological solutions and the methodology of assessment.

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Wishing you a pleasant festive season from the AQuAS blog

21 Dec

From the blog at AQuAS, the Agency for Health Quality and Assessment of Catalonia, we would like to thank you for having accompanied us for yet another year.

With the aim of sharing knowledge and creating an area for reflection, we have published 40 posts in 2017.

The blog’s Editorial line looks at subjects such as health assessment and health systems, the participation of patients and citizens, low value practices, eHealth and connected health, data analysis, research, gender issues, inequalities in health, innovation and current affairs; with content generated by authors at the AQuAS as well as by guest contributors.

The five most read posts in 2017 have been the following (in alphabetical order):

•   Caregiving first hand, by Assumpció González Mestre
•   Double health insurance cover, by Lluís Bohígas
•   Adjusted morbidity groups: a new population morbidity classifier, by Emili Vela
•   Mendeley, from reference manager to discovery tool and scientific visibility, by Paula Traver
•   An indicator for a more fairly funded primary care, by Cristina Colls

Thank you very much for reading us and this is wishing you all a very pleasant festive season!

Post by Marta Millaret (@MartaMillaret), editor of the AQuAS blog.

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To drip or not to drip (and thus, ship); that is the question!!

14 Dec

Sònia Abilleira

The proof given in 2015 of the efficacy of a mechanical thrombectomy in patients suffering from a severe ischemic stroke caused by a large vessel occlusion in the brain represents a change of paradigm because it forces us to reconsider the organised systems of care for people suffering from a severe stroke.

These models of organisation, or systems of stroke code as they are known in our environment, started being developed at the end of the 90s and beginning of the year 2000 in response to the evident difficulties observed in accessing intravenous thrombolytic therapy, a highly time dependent treatment, eminently due to the delay of the arrival of patients at emergency services.

Rightly, these difficulties were overcome by developing organised systems of care where a protocol was established for the rapid transfer of these patients to specially designated and previously alerted hospitals equipped to manage these cases expertly.

Recently, we have scientific evidence that establishes that a mechanical thrombectomy is the new therapeutic standard in the case of strokes caused by large vessel occlusion in the brain, clinically more severe, where the effect of intravenous thrombolysis is very limited (30% maximum rates of revascularisation). A mechanical thrombectomy, however, is a highly specialised and complex treatment that needs to be undertaken as quickly as possible in centres with advanced technology to guarantee adequate results.

This recentralising tendency in carrying out endovascular treatment contrasts with the decentralisation which was done in its day to ensure an adequate access to thrombolytic therapy which by nature needs to be administered in the first 4,5 hours after the onset of symptoms. This is why nowadays we talk about a change of paradigm to refer to the obsolescence of the models in stroke care developed in the era of thrombolysis, now that we are fully in the thrombectomy era.

The situation today is even more complex if we bear in mind what the mechanical thrombectomy trials established: that endovascular therapy was better than medical treatment, including intravenous thrombolysis. As a result, the current standard of care establishes that, with patients having no contraindications for thrombolytic treatment, this care must be given as soon as possible before a thrombectomy.

In urban metropolitan areas, mostly served by hospitals with the capacity of carrying out both treatments, the translation of the results of trials to clinical practice does not pose a problem.

However, the question is: what needs to be done when there is a stroke in one of the areas primarily covered by centres without endovascular capacity? Should we hold the patient back in the nearest stroke hospital, and in this way prioritise intravenous thrombolysis, even if by taking this decision we are in fact delaying the arrival of the patient at the tertiary stroke centre, the only one with the capacity of carrying out a thrombectomy? Or should we transfer these patients directly to the tertiary stroke centre with the understanding that a thrombectomy is the only valid therapeutic option in these cases, even if this means delaying or disregarding intravenous thrombolysis?

This is, in fact, the controversy between the “drip-and-ship” model which prioritises thrombolysis, and the “mother-ship” model which adopts the opposite approach and defends the direct transfer to a tertiary hospital where the entire process of care can be performed: from an ultra-rapid diagnosis to whatever type of reperfusion treatment.

If that weren’t enough, one must bear in mind that these models are based on the prehospitalisation selection of patients strongly suspected of having a stroke but without confirmation or diagnosis, nor of the subtypes of stroke, ischemic or haemorrhagic.

At present, we do not have the necessary evidence to prioritise the transfer of patients with acute stroke following either the “drip-and-ship” or the “mother-ship” protocol and this is why the RACECAT (NCT02795962) is being carried out in Catalonia since the beginning of 2017 which aims to provide answers to this controversy.

This study has been made possible thanks to the effort of a large number of health professionals: from those in charge of prehospital care (SEM/112), specially trained in the use of the RACE scale (a scale to assess the gravity of stroke and, therefore, those cases with a higher probability of having a large vessel occlusion and susceptible to being treated with mechanical thrombectomy), to the people in charge of care in each of the 26 hospitals in the stroke code network in Catalonia. Would you like to know more? Then you must watch this video.

The RACECAT trial is being carried out at present and in a couple of years, the evidence obtained from this study will allow us to modify the circuits of care in the case of a serious stroke code and so be able offer the greatest clinical benefit to these patients.

Post written by Sònia Abilleira.

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Open access depredatory journals

7 Dec

Joan MV Pons

As soon as it has been published and identified with an email address, it will not come as a surprise to receive a lot, but I mean a lot, of emails that often invite one to publish in what are apparently scientific journals (by name), to participate in congresses or conferences on subjects that seem of interest or to join as a member of some board of editors. These emails come in constantly and which I always mark as junk mail so as not to waste more time on them.

And it is true that this type of business, which is purely that, has proliferated in recent times largely due to the inherent zeal of the human species for lining one’s pockets, but also perhaps because of the great proliferation of researchers and research institutes. There is a lot of money at stake and it is well-known, that with minimal effort, one ends up publishing anything that one desires. If editors of journals in the past strived for readers and subscribers, now in addition to these open access journals, what they are looking for are columnists, people who publish in their pages …. in exchange for a small (and not so small) fee. There is no need to talk about the advantages of these open access journals and how some of them have attained a pretty high impact factor within a short period of time. Here the impact factor is a correct measure because it gives an approximation of the citations the articles receive which are published in these journals; it is a mistake, we know, to use the impact factor of the journal as an approximate measure or substitute (proxy or surrogate) for the value of an article.

Jeffrey Beal, a librarian, is the person who introduced this term and who elaborates and updates a list of journals periodically that can fit in to this  typology. According Wikipedia’s definition, those considered as predatory journals are those open access publications that stem from a business model based on the exploitation of open access publications by means of charging a publishing fee to the authors without providing the editing and publishing services of journals considered as legitimate (be they open access or not). Beall’s List up to December 2016 – a good sample of how Wikipedia updates itself in some subjects – had some 1,155 journals included.

The same universal cybernetic encyclopaedia provides a series of associated characteristics with this type of predatory journal (also hunters, that hunt to survive).

Post written by Joan MV Pons

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Reusing health data: oral anticoagulants and cerebral haemorrhages

23 Nov

Rosa Maria Vivanco

Last September, the 35th scientific meeting of the Spanish Epidemiological Society (SEE in Spanish) took place in Barcelona.

The AQuAS presented the impromtu roundtable “The reuse of health data for research: how, when and what is expected from the PADRIS programme in Catalonia.”

At this roundtable, moderated by Mireia Espallargues and Ramon Roman, the attendees were informed of what the PADRIS programme consists of (Public Data Analysis for Health Research and Innovation Programme in Catalonia) and some results were presented, such as those that derive from the study we are carrying out at the IMIM (Medical Research Institute of the Hospital del Mar), with the support  of the Catalan Stroke Program, on the link between the use of oral anticoagulants and cerebral haemorrhages.

Cerebral haemorrhages are the second most frequent type of stroke in the world, with an incidence of 48 cases per 100,000 inhabitants per year (Global Burden Disease 2010). The most frequent cause is high blood pressure.

As with other causes, it points to the use of anticoagulant drugs and old age. High blood pressure is a risk factor which is being detected the earliest and which is being controlled more efficiently in recent years in high income countries, and thus it is estimated that associated cases of cerebral haemorrhages will decrease.

By contrast, it is foreseeable that due to the ageing of the population and the increase in the prescription of anticoagulants to prevent stroke at a primary and secondary stage, cerebral haemorrhages associated to these other risk factors will increase.

On the other hand, new oral anticoagulants have appeared on the market (known as direct action) which, according to clinical trials, offer similar efficacy and improved safety features over the anticoagulants that there have been till now, known as vitamin K dependent.

These results, however, need to be verified in habitual clinical practice.

This is the context in which it is so necessary to have a programme available with the characteristics of the PADRIS programme.

What can we get out of it?

To know, by using population data, among other elements, the incidence of cerebral haemorrhages over the last 10 years, their association with the use of these drugs, both dependent vitamin K coagulants and the new oral anticoagulants, whether the tendency of the prescription has changed, whether the new oral anticoagulants are associated to a lower risk of cerebral haemorrhages as studies seem to indicate, what segment of the population is most affected and even to be able to make estimates for the years ahead.

In the case of our study, the preliminary results that we presented show a tendency for a greater prescription of new oral anticoagulants and a stabilisation of the number of cerebral haemorrhages in recent years. To be able to give more definitive results, more analyses need to be done and we continue working because this is what the complexity of managing data requires.

Making the most of our experience, we feel we are in a position to offer a series of advice to any research group that is considering putting in a request to the PADRIS programme for health data.

One must bear in mind the characteristics of the registries and the data bases from which health information is obtained: namely, that the data obtained is administrative data, with the limitations that this entails, and that technical personnel do not speak the same language as research personnel.

This is why we consider it necessary to have the figure of an interlocutor or mediator that enables the research group and technical and administrative personnel “to understand each other” and that via the feedback from both sides, the group can benefit from the numerous opportunities that the PADRIS programme offers.

In our case, thanks to the Catalan Stroke Program, we were able to push ahead with the project and we hope to be able to publish our results soon and provide society with the corresponding benefits.

Post written by Rosa Maria Vivanco, researcher at the Neurovascular Diseases Research Group of  at IMIM.

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PEGASO: Fit For Future: connected health and long-term strategy

16 Nov

Elisa Puigdomènech

Developing a platform based on mHealth that has mobile applications (apps), a game and intelligent sensors has been the goal of the European project  PEGASO Fit For Future, which began in December 2013 and ended last July.

It is a platform that aims to improve both the lifestyles of adolescents (diet, physical activity and hours of sleep) and the knowledge that they might have about these life styles. To achieve this, intelligent sensors (t-shirt and bracelet) which record the physical activity and hours of sleep of an individual and also different apps which record the intake of food by means of a diary and footsteps taken by means of an accelerometer were developed and tested.

The PEGASO Fit For Future platform detects which lifestyles a user has and makes recommendations on how to improve them. In addition, it incorporates a gamification component: based on how healthy the lifestyle of a user is as well as how much their knowledge improves, which are then converted into obtaining a greater or lesser amount of points.

As an example, here we can see a screenshot of a fictitious user:

Professionals from different areas collaborated in the project: developers of games, apps and sensors, design and gaming experts, health professionals (doctors, nurses, experts in nutrition, experts in physical activity and psychologists) and also experts in health technology assessment and public health.

There were two different phases of the project: the development phase of the platform and the assessment phase.

During the development phase, while some professionals put their efforts into ensuring the quality and appropriateness of the medical and clinical content of the platform, others concentrated on aspects of a technological nature.

Nevertheless, the opinions of the end users themselves, adolescents, were always kept in mind during this process. In three iterative stages, boys and girls in Catalonia, Lombardy, England and Scotland tested this technology out in the different stages of its development.

The proposals for improvement made by the adolescents including their preferences were, whenever possible, kept in mind for the later versions of the platform. The aim was to guarantee as far as possible that what was being developed was practical for and accepted by the end users.

The last stage of the project was the assessment of the platform. The assessment of the different elements (apps, games and sensors) was to see if they really did help to improve the lifestyles and knowledge about lifestyles among adolescents and to assess the experience of the user after having used the platform.

To this end, a pilot study was carried out with adolescents from Catalonia, Lombardy, Scotland and England in which 365 mobile phones with the PEGASO platform installed were used by adolescents.

After six months of use, the intervention was assessed by means of validated questionnaires, a qualitative methodology and data obtained from the platform itself. A control group was introduced allowing for comparisons to be made with adolescents that did not have access to the platform.

The results of this study will help to evaluate whether new technologies are practical in helping adolescents improve both their lifestyles and knowledge about these lifestyles, a population group accustomed to using new technologies and that, in general, do not often visit health professionals.

Getting closer to the population by using mobile technology and the recreational aspect of gaming could be a good strategy for an intervention of this type related to the promotion of healthy lifestyles among adolescents. At a population level, it is a long-term strategy and hence the slogan “Fit For Future” of the PEGASO project.

Post written by Elisa Puigdomènech.

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Caregiving first hand

2 Nov

Assumpció González Mestre

Assumpció González Mestre, Head of Programa Pacient Expert Catalunya® (Expert Patient Programme Catalonia®) and Cuidador Expert Catalunya® (Expert Caregiver Catalonia®) answers questions in an interview with Cari Almazán related to the figure of “expert caregiver”.

The programmes of Pacient Expert Catalunya® and Cuidador Expert Catalunya®, respectively, have the same aim of equipping people with the tools and resources to help them in their daily lives.

This type of learning programme among equals manages to improve the quality of life of people which find themselves in the environment of a disease in the context of chronicity in Catalonia, be it as patients, as caregivers or both things together.

Cari: Who is the Programa Cuidador Expert Catalunya® aimed at?

Assumpció: Our field of action is clearly orientated at the caregivers of people having chronic diseases. By “expert caregiver” we understand them to be a person who takes care of another person with a chronic disease having complex attention needs and who is able to take on that responsibility, give care and acquire the skills that help them manage the physical, emotional and social impact of giving care thereby improving their life quality and that of the person they are taking care of.

Cari: What does turning a caregiver into an expert caregiver involve?

Assumpció: When a person finds themselves in the situation of having to take on the task of taking care of another person with a disease, the life of that person is totally conditioned by the situations, planned or not, foreseen or unforeseen, which the disease might involve. Helping a person in that critical moment often generates a change in the life of the person giving care and it becomes an emotional overload in their daily lives as a result of having to address the needs of the person they are taking care of. In this sense, having more capacity to take on responsibility and being able to take care of themselves and of the other person, on the one hand, and of acquiring skills that help them manage the physical, emotional and social impact which we know this situation involves, on the other, are some of the key aspects that we would consider as essential when identifying a possible expert caregiver.

Cari: Is being able to improve the quality of life of caregivers the aim of the programme?

Assumpció: It is one of the main aims although there are others. Giving support to caregivers in the management and care of the person they are taking care of; improving the life of caregivers; being able to involve and satisfy patients and caregivers; improving the efficacy of caregivers in their own care and in the care of the person they are taking care of; learning to identify the degree of overload on caregivers; and having an influence on aspects of the health of a caregiver related to giving care, are the six specific aims of the Programa Cuidador Expert Catalunya®.

Cari: Should all caregivers become expert caregivers?

Assumpció: The end goal is not that everyone becomes an expert but rather that they become aware of what it means to be a caregiver and to learn to identify when they find themselves overloaded and that, therefore, they need to ask for help from another person of the family or from a professional to be able to deal with the situation which they find themselves in. If caregivers become aware of this situation and ask for support at the appropriate time, they will be able to give care and take care of themselves better. Therefore, the expert caregiver is a volunteer with the capacity to take care of themselves without psychophysical disabilities and who can empathise, be interested in helping, be highly motivated and have strong communicative skills. These elements are assessed in an individual interview and after completing specific questionnaires.

Cari: Perhaps it is not always easy to put oneself in someone else’s shoes…

Assumpció: One of the fundamental aspects of this initiative and one which makes it different is that the expert caregiver experiences caregiving first hand which places them in a privileged position when talking to other people who are going through similar experiences.

Cari: What role does the health professional play in relation to the expert caregiver?

Assumpció: The health professional (doctor, nurse or social worker) takes on the role of observer, who can step in to redirect the session, but only when necessary. The Cuidador Expert Catalunya® programme helps both people to closely collaborate with each other having the same aim: to improve the quality of life of the patient, the caregiver and their environment.

Cari: What are the basics of the programme in terms of content and who developed them?

Assumpció: The specific educational materials and methodological guide are the result of the participation of a lot of expert health professionals from different disciplines. These contents have later been validated with the participation of caregivers. The idea is to get to people and so an appropriate language for everyone is needed.

Cari: How has the Cuidador Expert Catalunya® programme been implemented?

Assumpció: The process of implementation in a care team involves different stages which include the presentation of the programme to professionals, the selection of caregivers, the training of professionals and caregivers, the setting up of the group of caregivers and the start of sessions.

Cari: In summary therefore… what it is about, in the end, is to organise sessions?

Assumpció: Not exactly. It is about sharing knowledge and experiences among caregivers through 9 structured sessions where they approach and deal with a different subject each day looking for the tools that aid them to take care of themselves.

Cari: How is the Cuidador Expert Catalunya® programme assessed?

Assumpció: It is assessed quantitatively and qualitatively by measuring the knowledge gained, the degree of self-care, quality of life, self-reported problems, the degree of overload, the degree of satisfaction and the use of services. The results between the start and end of the intervention are compared and then again 6 and 12 months after it has ended.

Cari: What is the key element of the project?

Assumpció: Without a shadow of a doubt, learning among equals and the relational network. Throughout the experience acquired during the implementation of the programme, we have had the opportunity to confirm that the fact that the programme takes place in one neighbourhood or community is very positive. The relational network between the people that participate in the different groups makes it possible for the expert caregiver to become an agent in the community. The programme becomes a community activity of learning among equals.

 

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