Author: Nina Adrion

Exploring what self-management characteristics work (or do not work)

Standard network meta-analysis (NMA) focuses on assessing combination of components whereas component network meta-analysis (CNMA) focuses on estimating component effects and then proceeds to reconstruct the effects of self-management interventions (SMIs) based on the component effects. But how to explore what self-management characteristics work (or do not work)?

The aim of COMPAR-EU is to compare the effectiveness of SMIs in four chronic diseases. With hundreds of randomized controlled trials and a plethora of different SMIs available, NMA is the appropriate method for this aim. SMIs are not easy to define as they consist of multiple, possibly interacting components. These components are not limited just to what is the SMI (sharing information, skills training etc.) but also include the mode of delivery (e.g. face-to-face vs. remotely), the provider (physician, nurse, etc.), the location (primary care, hospital, etc.), the type of encounter (clinical visits, self-guided, etc.) and the time of communication (synchronous vs. asynchronous). Additionally, there may be variations in other characteristics (e.g. duration, intensity). One can easily see that heterogeneity of SMI may be an issue.

Methodological vehicles (NMA and CNMA)

At the synthesis level, there are two main approaches for handling such interventions:

  • Standard NMA, where each combination of components forms a distinct intervention.
  • Component NMA, that estimates the effect of each component and then estimates the effect of a SMI by summing the effects of the components comprising this SMI (additivity assumption).

The former will answer the question ‘which SMI work’ whereas the latter will answer the question ‘which components work’.

With multiple SMI components and outcomes, there is a high likelihood we will find patterns in the noise. Finding meaningful and important patterns between SMI components and effectiveness is challenging.

Evidence Base

In COMPAR-EU, we have identified 43 distinct characteristics (components) of SMIs and, after long discussions, grouped them down to 13 (plus two versions of a usual care). Ideally, we would like to estimate the effect of each of the 43 components, but we had to proceed to some clinically meaningful merging to avoid ending up with each study comparing different SMIs. There is a cost to that, information is lost by merging characteristics and this may lead to a substantial increase in heterogeneity. Subsequently, NMA assumptions such as transitivity (the ability to estimate effects indirectly) may be challenged.

To understand the challenges in the analysis with SMIs, even with a considerable merging of components, have a look at the network plot below (the outcome is all-cause hospital admissions, nodes/circles represents SMIs and edges/lines represent studies comparing the connected SMIs). There is a total of 60 studies. A meta-analyst would normally be delighted with this number. But these 60 studies compare 33 different SMIs (combination of different SMI components)!

We have observed similar patterns in all outcomes (more than 80) we have analyzed. More specifically:

  • Networks are sparse. Most SMIs are compared to usual care (UC) and not to each other. In this outcome, 52 of the 60 trials (87%) compare a SMI to UC.
  • For most comparisons (528 in this network!), information comes either only from direct evidence (studies directly comparing the SMIs of the comparison – lines in the network plot) or from indirect evidence (two SMIs not compared in any trial – no line in the network plot).
  • Studies are small and associated with much uncertainty. The relative effect of each SMI vs UC is informed mainly by the study including this comparison. We may end up with a SMI with a large effect in the NMA just because this SMI is compared in a single trial at high risk of bias. This has also implications for the main NMA assumptions (agreement between direct and indirect evidence).
  • There is substantial heterogeneity of the SMI effect.
  • In all outcomes there are studies not connected to the main network (in this outcome there is only one).
Dimitris

Dr Dimitris Mavridis

Dimitris has been involved in evidence synthesis for a decade now. He acts as a reviewer both for the Cochrane and the Campbell collaborations. He also serves as an associate editor for ‘Research Synthesis Methods’ and the series ‘statistics in practice’ in the ‘Evidence Based Mental Health’ journal. He has published many NMA and has been working mainly on statistical methodology surrounding NMA.

Interpretation of results

Apart from all these, interpretation of results is not straightforward. Partly due to imprecision in results and partly due to the fact that there is not a clear pattern between effect sizes and presence/absence of components in SMIs. Consider the table below. What are the conclusions? Adding component D worsens the outcome but adding both components D and E improves the outcome? It is tempting (and wrong) to focus on point estimates and statistical significance. The 95% CIs are huge and all the information comes from the small trials including these interventions. Hence, we additionally need to consider imprecision, the risk of bias and quality of these studies when interpreting the results. In this network, we have 30 relative effects of SMIs vs. UC and interpretation is much more complicated.

Component network meta-analysis attempts to solve some of these issues. The effect of a combination of components equals the sum of the effects of its components e.g.

This is known as the additivity assumption. Instead of estimating the effect of A+B+C from the couple trials comparing this SMI, you estimate it through the effects of its components, which are included in many trials each. As a result, we have

  • more precise effect estimates
  • effects closer to the null. Since components are included in trials with both small and large effects, when combining them to get the effect of the SMI, it is unlikely to see very large effects like those observed in standard NMA.

CNMA may give us information on which components are not working. A component included in SMIs with small effects is expected to have a negative impact on the SMIs in general. It also includes studies not connected to the main network, because all studies are connected at the component level.

Remaining challenges

Suppose now that the CNMA concludes that components A, B and C are effective, but these have never been combined in any of the trial arms. Is it rational to suggest a SMI with these components? Some content knowledge is probably useful. Additionally, the additivity assumption of CNMA is a hard one to defend. In practice, complex interventions such as SMIs are full of interdependencies (interactions) and non-linear responses. An interaction effect occurs when the effect of one component depends on the value of another component. We can express it like this

The interaction term can be positive (the two components act synergistically), negative (antagonistically) or zero (independently). The possible combinations of components are innumerable and we cannot just add interactions everywhere. Ideally, we would like content knowledge on where (which components) to add interaction terms. This is not an easy task, and ignoring interaction terms challenges the interpretation of the component effects.

So how are we supposed to analyze such a network? Albert Einstein said that if you have an hour to solve a problem, you should spend 55 minutes thinking about the problem and 5 minutes thinking about the solution. We have been thinking about the problem for some months now, trying to formulate the right questions, and according to my calculations we can afford going on like this for some extra months. But at some point we have to enter the five minute period of solving the problem. Yet, with such a complex dataset, with multiple components, outcomes and analyses, there is a high likelihood we will find patterns in the noise. Finding meaningful and important patterns in the data is the main challenge. To this end, we will try not even NMA and CNMA but a series of regression analyses and visual tools to understand interdependencies between components, with an aim to find SMI characteristics and their combinations that work, but also those that do not.

27. November 2020

Formation of a panel to formulate recommendations for SMI for Type 2 Diabetes Mellitus

Sixteen participants from nine European countries conform this panel. There is a broad representation of stakeholders including health services researchers, endocrinologists, health economists, family practitioners, self-management experts, nurses, nutritionists, patient advocates and guideline methodologists. They are active since last week of October.

The panellists will:

  • Rate the importance of included outcomes
  • Propose the magnitude of effects thresholds.
  • Discuss and agree on draft evidence summaries prepared by the COMPAR-EU Consortium about the effects of interventions, the economic considerations, values and preferences of patients, and contextual factors of self-management interventions.
  • Discuss and agree on draft judgments for the different criteria relevant for the formulation of recommendations, included in the evidence to decision (EtD) framework.
  • Discuss, formulate and agree on draft recommendations, conclusions and other related contents (e.g. summary of findings tables, narrative summaries, etc.).

17. November 2020

Launch of Self-Management Europe

Research partners set up a new European Research and Innovation Centre on Patient Empowerment and Self-Management: Self-Management Europe.

It is an exploitation initiative of the COMPAR-EU project with the aim of developing the potential of people, professionals, organisations, systems, and communities for creating a society that strengthens empowerment and self-management in people with chronic diseases. Through capacity building, the centre provides knowledge, skills, motivation, and competency to people to act as leaders of self-management and empowerment enhancement in everyday life to improve health and quality of life for all.

Whilst there are various ongoing initiatives in Europe to support self-help and self-management with whom the research centre will work in partnership. However, it addresses the critical gap of accelerating the translation of critical research findings in practical applications to benefit patients, organisational and clinical processes and health innovations.

The newly formed initiative recently published a press release which you can read here.

12. November 2020

Using Nudges to Enhance Clinicians’ Implementation of Shared Decision Making With Patient Decision Aids

Self-management not only means to deal with the current condition, but also pursuing a holistic approach to mental and physical wellbeing. Self-management complements medical treatment to become more effective and successful. “Self-management has empowered me to better know and understand myself on so many levels” explains Jacqueline Bowman-Busato in her contribution.

For at least the past 23 years, I’ve been living with two complex chronic, relapsing diseases: Autoimmune Hashimoto’s and obesity. And yet, I can only say that it’s been the last 18 months where I have finally felt in control of my two diseases in any meaningful way. And this has been due to finally understanding and embracing responsible self-management.

Let me explain from a patient’s perspective. When I consciously started the journey of firstly realising that I had “a thyroid problem” which eventually was diagnosed as autoimmune hashimotos, I didn’t understand that a simple pill wasn’t enough to minimise symptoms. Critically, none of my medical specialists seemed to know or care about this fact either. The resultant search for energy in the wrong places aggravated my hashimotos symptoms (severe malabsorption of vitamin D and B as well as iron which all present as depression and severe anxiety). And all very quickly led to developing obesity. I never discussed obesity with my GP for 20 years (the average is 6 years according to a new study Action IO). I “dealt with it” by following holistic diets which always had a beginning, middle and very quick end!

Self-management has empowered me to better know and under-stand myself on so many levels.

It´s time to change

It was not until 18 months post bariatric surgery on 4 July 2016 that everything finally clicked into place for me. I realised that regardless of the good intentions of the public health environment, the sad fact of today’s chronic disease environment is medical treatment of physical manifestations rather than a holistic approach to mental as well as physical wellbeing, not to mention a lack of positive motivation to work together with health professionals in an empowering and empowered way.

Self-management has meant that I have had to take a very long and hard look at myself, the good, the bad and the very ugly truths in order to forge a personal pathway towards managing my life in such a way to optimise my mental health and wellbeing. Armed with my newly gained (and acknowledged) self-knowledge, I forged my own objectives-driven processes for achieving my goal of “mental clarity”. For me, brain fog has been my biggest barrier to sustainable management of both hashimotos and obesity. Having an objective of brain clarity rather than weight or specific blood values has meant that I’ve been able to take control of my health much more than if I solely relied on medication and then wondered why I was still malnourished to the point of continuing to seek energy in foods which are basically poison to me. Giving myself parameters with well-defined processes has significantly empowered me and raised my confidence levels to collaborate with my health care team. I am now listened to and heard.

Jacqueline_Bowman-Busato

Jacqueline Bowman-Busato

As a patient representative, Jacqueline has advised the Innovative Medicines Initiative (IMI) on patient engagement strategy, and provides expert advice to the European Commission on self-care policies. She works extensively on European as well as global projects bringing the key stakeholders together to build lasting consensus on global, regional and national levels.

Empowerment through self-management

Science very clearly states that obesity is a chronic relapsing disease. It‘s not the fault of one or other individual. In my world, that does not mean that I have to accept whatever medication I’m given in isolation. It means that I use the treatment (in my case the radical treatment of bariatric surgery) as a tool and I supplement with my own process for mental and physical wellbeing to put me on an even playing field to be able to optimise the medical treatment. Self-management empowers me to engage with the system and my health professionals. It allows me to give myself a bit of certainty which is not anxiety causing. It allows me to feel a partner in my own health. Self-management has empowered me to better know and understand myself on so many levels.

23. October 2020

Climbing the Eiger at 60?

The medication I take has a huge positive effect on my quality of life and makes such a mad plan thinkable. But there is a big difference between feeling ok, with bearable pain and being able to manage to get through the day, and feeling really, really fit and strong and confident. And that is the change in the last two years since I became aware of the power of “lifestyle medicine”.

“You’ve got to be kidding!” said my friend Jeannie about my plan to climb the Eiger over the Mittellegi ridge. Or maybe she thought that I was mad. After all, I have suffered from severe Spondyloarthritis and moderately severe Inflammatory Bowel Disease for decades. Thanks to “lifestyle medicine” I managed my disease and improved my well-being. It was a gradual process. No clinician has advised me to adopt these practices. I have had to sort through the available material and decide myself what is quackery and what is responsible advice.

I believe that without all these lifestyle changes…. I never, ever, could have climbed the Eiger at the age of 60!

What is lifestyle medicine?

According to the American College of Lifestyle Medicine, it uses evidence-based practice to help people adopt and sustain healthy behaviour that affects health and quality of life. Some Lifestyle health factors are now well-established: don’t smoke; keep your weight under control; exercise regularly. But the benefits of taking these lifestyle changes even further don’t seem to be recommended by most doctors. Perhaps they aren’t proven enough, or not well-known, or not believed in. For whatever reasons, these are all things that I have found out more or less for myself.

Sleep: Worries, overwork or medication have all affected my ability to get a good nights’ sleep in recent years. One source of support has been from Dr. Guy Meadows and his approach called ACT (Acceptance and Commitment Therapy). At the Sleep School he teaches how to overcome insomnia by observation and acceptance. It often works for me. However, the most important factor affecting my sleep is nutrition.

Nutrition: There has been a lot written about diet as a factor in controlling inflammatory diseases, but what I have discovered in the last 6 months or so, is that it is just as important when I eat, as what I eat. Through fasting I give my digestive system a period of down time when it doesn’t have to digest new food and can rest and repair. I can feel how my gut is more relaxed, how much better I can sleep, and how energised I am.

Exercise: To keep my spirits up during Lockdown I made a plan “5 tips to manage your day” which included daily exercise. I used an online fitness programme with a huge of variety of options from stretching and yoga through pilates to PIIT (professional intensive interval training). It was amazing how doing this every morning for several months made me fitter than I could ever have imagined, despite never going far from my own house, let alone to the mountains.

Stress reduction: The key to stress reduction for me is a few minutes of mindfulness or meditation before starting the day. Collecting my thoughts and intentions by keeping a journal also helps.

img16

Judith Safford

Judith is an economist, who has dedicated her professional life to excellence in non-profit management. Affected by inflammatory arthritis since early adulthood, she works as a consultant and patient expert. Her special interest is the involvement of patients in healthcare. She is a member of the Sciana Health Leaders Network, a TED speaker and
writes a blog at arthritisandme.ch.

Future research

There needs to be much more research to provide evidence-based, mainstream recommendations for the benefit of all patients. The Spondylitis Association of America recently published an excellent webinar on lifestyle healthcare, but otherwise it’s hard to find trustworthy information. I believe that if healthcare research were more centred on patients’ well-being, rather than being driven by commercial considerations or personal aspirations, these areas would be given much higher priority.

An extended version of the blog post can be read on my own blog “Living with Spondyloarthritis”.

22. October 2020

“All about the money?” A qualitative interview study examining organizational- and system-level characteristics that promote or hinder shared decision-making in cancer care in the United States

Self-management not only means to deal with the current condition, but also pursuing a holistic approach to mental and physical wellbeing. Self-management complements medical treatment to become more effective and successful. “Self-management has empowered me to better know and understand myself on so many levels” explains Jacqueline Bowman-Busato in her contribution.

For at least the past 23 years, I’ve been living with two complex chronic, relapsing diseases: Autoimmune Hashimoto’s and obesity. And yet, I can only say that it’s been the last 18 months where I have finally felt in control of my two diseases in any meaningful way. And this has been due to finally understanding and embracing responsible self-management.

Let me explain from a patient’s perspective. When I consciously started the journey of firstly realising that I had “a thyroid problem” which eventually was diagnosed as autoimmune hashimotos, I didn’t understand that a simple pill wasn’t enough to minimise symptoms. Critically, none of my medical specialists seemed to know or care about this fact either. The resultant search for energy in the wrong places aggravated my hashimotos symptoms (severe malabsorption of vitamin D and B as well as iron which all present as depression and severe anxiety). And all very quickly led to developing obesity. I never discussed obesity with my GP for 20 years (the average is 6 years according to a new study Action IO). I “dealt with it” by following holistic diets which always had a beginning, middle and very quick end!

Self-management has empowered me to better know and under-stand myself on so many levels.

It´s time to change

It was not until 18 months post bariatric surgery on 4 July 2016 that everything finally clicked into place for me. I realised that regardless of the good intentions of the public health environment, the sad fact of today’s chronic disease environment is medical treatment of physical manifestations rather than a holistic approach to mental as well as physical wellbeing, not to mention a lack of positive motivation to work together with health professionals in an empowering and empowered way.

Self-management has meant that I have had to take a very long and hard look at myself, the good, the bad and the very ugly truths in order to forge a personal pathway towards managing my life in such a way to optimise my mental health and wellbeing. Armed with my newly gained (and acknowledged) self-knowledge, I forged my own objectives-driven processes for achieving my goal of “mental clarity”. For me, brain fog has been my biggest barrier to sustainable management of both hashimotos and obesity. Having an objective of brain clarity rather than weight or specific blood values has meant that I’ve been able to take control of my health much more than if I solely relied on medication and then wondered why I was still malnourished to the point of continuing to seek energy in foods which are basically poison to me. Giving myself parameters with well-defined processes has significantly empowered me and raised my confidence levels to collaborate with my health care team. I am now listened to and heard.

Jacqueline_Bowman-Busato

Jacqueline Bowman-Busato

As a patient representative, Jacqueline has advised the Innovative Medicines Initiative (IMI) on patient engagement strategy, and provides expert advice to the European Commission on self-care policies. She works extensively on European as well as global projects bringing the key stakeholders together to build lasting consensus on global, regional and national levels.

Empowerment through self-management

Science very clearly states that obesity is a chronic relapsing disease. It‘s not the fault of one or other individual. In my world, that does not mean that I have to accept whatever medication I’m given in isolation. It means that I use the treatment (in my case the radical treatment of bariatric surgery) as a tool and I supplement with my own process for mental and physical wellbeing to put me on an even playing field to be able to optimise the medical treatment. Self-management empowers me to engage with the system and my health professionals. It allows me to give myself a bit of certainty which is not anxiety causing. It allows me to feel a partner in my own health. Self-management has empowered me to better know and understand myself on so many levels.

30. September 2020

Fostering Shared Decision-Making through the use of Electronic Health Records

Shared decision-making (SDM) in healthcare is considered a gold standard for supporting the cooperation of physicians and patients. Despite various positive outcome-relevant effects, the practice of engaging patients in their healthcare decisions is infrequently implemented in routine care. In addition to some system-level characteristics there are organizational characteristics that influence SDM implementation. One strategy focusing on the organizational level to support SDM is the use of electronic health records (EHR).

SDM is a process by which a healthcare provider and a patient jointly make a health decision after discussing different treatment options, their potential benefits and health risks, and considering the patient’s values and preferences. This process is challenging when patients lack information about their health problems and the pros and cons of various treatment options. Acknowledging and supporting the patient resolves this barrier and can help foster an informed, shared decision about the best disease management strategy.

By ensuring that the patient is well informed, he or she can better participate in a shared decision-making process with the physician.

Providing reliable and evidence-based health information

National health information portals, provided by government funded organizations, have an excellent opportunity to be a central point of contact for health issues. Such portals can support patients in making informed decisions by providing reliable and evidence-based information. In countries like Denmark and Austria, the EHR is connected to health information portals. This connection offers the potential to interlink general health information with patients’ individual health data along their course of treatment. By clicking on an “info” button displayed with the patients’ health data (e.g. laboratory results), the patient is directed to corresponding, easily understandable information within the health information portal. In the same way, it would be of great benefit if the entry of a specific diagnosis in an EHR is linked with disease-related information recommended by physicians. This information should also include decision aids that facilitate patient participation in healthcare decisions by providing information about the treatment options and their associated outcomes (benefits and harms). This allows patients to review possible options by clarifying personal values. By ensuring that the patient is well informed about his/her disease and the different treatment options, the patient can better participate in a shared decision-making process and take more responsibility for his/her health.

_DSC5675

Nina Adrion

Nina has a background in Health Economics and works at OptiMedis in different national and EU projects with a particular interest in shared decision-making. As a Research & Innovation Manager, she is also an expert in developing and implementing innovative healthcare programs.

The use of EHR in the SDM process

An EHR can support SDM at every stage of the process. Lenert et al. discuss a four-phase conceptual model to integrate the SDM process into clinical workflows. A possible process might look like this: In the first phase “Initiate SDM”, EHR can use an alert system when there is a context for preference sensitive care. In that way, the EHR alert helps a provider recognize and respond to a context requiring SDM. In the second phase “Discuss Options”, the provider can use the EHR to send an order for the use of a decision aid (that might be provided by the health information portal including further disease-specific information, see above). The patient receives a reminder showing that he/she has a task to complete in his/her patient portal account. This can be done either during a patient visit or at home, with other family members if desired. After filling out the decision aid including a value clarification exercise, the data would be presented back to the provider. In the third phase “Make a Decision”, the provider can access the results of the patient´s preferences of the different treatment options. After that, the patient and the provider together deliberate on the best option for care. In the last phase “Monitor & Follow-up”, so called “agents” that run within an EHR can detect situations where treatment conflicts with patient preferences. Hereby, ongoing monitoring of care can ensure treatments are consistent with patient´s preferences.

Nevertheless, it is particularly important to emphasize that EHR should not replace the doctor-patient interaction but facilitate this interaction by providing information in a timely manner.

Qualitative evidence synthesis for complex interventions and guideline development: clarification of the purpose, designs and relevant methods

Self-management not only means to deal with the current condition, but also pursuing a holistic approach to mental and physical wellbeing. Self-management complements medical treatment to become more effective and successful. “Self-management has empowered me to better know and understand myself on so many levels” explains Jacqueline Bowman-Busato in her contribution.

For at least the past 23 years, I’ve been living with two complex chronic, relapsing diseases: Autoimmune Hashimoto’s and obesity. And yet, I can only say that it’s been the last 18 months where I have finally felt in control of my two diseases in any meaningful way. And this has been due to finally understanding and embracing responsible self-management.

Let me explain from a patient’s perspective. When I consciously started the journey of firstly realising that I had “a thyroid problem” which eventually was diagnosed as autoimmune hashimotos, I didn’t understand that a simple pill wasn’t enough to minimise symptoms. Critically, none of my medical specialists seemed to know or care about this fact either. The resultant search for energy in the wrong places aggravated my hashimotos symptoms (severe malabsorption of vitamin D and B as well as iron which all present as depression and severe anxiety). And all very quickly led to developing obesity. I never discussed obesity with my GP for 20 years (the average is 6 years according to a new study Action IO). I “dealt with it” by following holistic diets which always had a beginning, middle and very quick end!

Self-management has empowered me to better know and under-stand myself on so many levels.

It´s time to change

It was not until 18 months post bariatric surgery on 4 July 2016 that everything finally clicked into place for me. I realised that regardless of the good intentions of the public health environment, the sad fact of today’s chronic disease environment is medical treatment of physical manifestations rather than a holistic approach to mental as well as physical wellbeing, not to mention a lack of positive motivation to work together with health professionals in an empowering and empowered way.

Self-management has meant that I have had to take a very long and hard look at myself, the good, the bad and the very ugly truths in order to forge a personal pathway towards managing my life in such a way to optimise my mental health and wellbeing. Armed with my newly gained (and acknowledged) self-knowledge, I forged my own objectives-driven processes for achieving my goal of “mental clarity”. For me, brain fog has been my biggest barrier to sustainable management of both hashimotos and obesity. Having an objective of brain clarity rather than weight or specific blood values has meant that I’ve been able to take control of my health much more than if I solely relied on medication and then wondered why I was still malnourished to the point of continuing to seek energy in foods which are basically poison to me. Giving myself parameters with well-defined processes has significantly empowered me and raised my confidence levels to collaborate with my health care team. I am now listened to and heard.

Jacqueline_Bowman-Busato

Jacqueline Bowman-Busato

As a patient representative, Jacqueline has advised the Innovative Medicines Initiative (IMI) on patient engagement strategy, and provides expert advice to the European Commission on self-care policies. She works extensively on European as well as global projects bringing the key stakeholders together to build lasting consensus on global, regional and national levels.

Empowerment through self-management

Science very clearly states that obesity is a chronic relapsing disease. It‘s not the fault of one or other individual. In my world, that does not mean that I have to accept whatever medication I’m given in isolation. It means that I use the treatment (in my case the radical treatment of bariatric surgery) as a tool and I supplement with my own process for mental and physical wellbeing to put me on an even playing field to be able to optimise the medical treatment. Self-management empowers me to engage with the system and my health professionals. It allows me to give myself a bit of certainty which is not anxiety causing. It allows me to feel a partner in my own health. Self-management has empowered me to better know and understand myself on so many levels.

26. August 2020

Winner of our COMPAR-EU platform call

We are happy to announce that Sonicon, a company focused on providing reliable software solutions, will support the development of our European self-management platform hosting different decision aids and further key results resulting from our project.

We are ready to start our joint collaboration on this healthcare innovation!

11. August 2020

The importance of interactions between patients and healthcare professionals for heart failure self-care: A systematic review of qualitative research into patient perspectives

Self-management not only means to deal with the current condition, but also pursuing a holistic approach to mental and physical wellbeing. Self-management complements medical treatment to become more effective and successful. “Self-management has empowered me to better know and understand myself on so many levels” explains Jacqueline Bowman-Busato in her contribution.

For at least the past 23 years, I’ve been living with two complex chronic, relapsing diseases: Autoimmune Hashimoto’s and obesity. And yet, I can only say that it’s been the last 18 months where I have finally felt in control of my two diseases in any meaningful way. And this has been due to finally understanding and embracing responsible self-management.

Let me explain from a patient’s perspective. When I consciously started the journey of firstly realising that I had “a thyroid problem” which eventually was diagnosed as autoimmune hashimotos, I didn’t understand that a simple pill wasn’t enough to minimise symptoms. Critically, none of my medical specialists seemed to know or care about this fact either. The resultant search for energy in the wrong places aggravated my hashimotos symptoms (severe malabsorption of vitamin D and B as well as iron which all present as depression and severe anxiety). And all very quickly led to developing obesity. I never discussed obesity with my GP for 20 years (the average is 6 years according to a new study Action IO). I “dealt with it” by following holistic diets which always had a beginning, middle and very quick end!

Self-management has empowered me to better know and under-stand myself on so many levels.

It´s time to change

It was not until 18 months post bariatric surgery on 4 July 2016 that everything finally clicked into place for me. I realised that regardless of the good intentions of the public health environment, the sad fact of today’s chronic disease environment is medical treatment of physical manifestations rather than a holistic approach to mental as well as physical wellbeing, not to mention a lack of positive motivation to work together with health professionals in an empowering and empowered way.

Self-management has meant that I have had to take a very long and hard look at myself, the good, the bad and the very ugly truths in order to forge a personal pathway towards managing my life in such a way to optimise my mental health and wellbeing. Armed with my newly gained (and acknowledged) self-knowledge, I forged my own objectives-driven processes for achieving my goal of “mental clarity”. For me, brain fog has been my biggest barrier to sustainable management of both hashimotos and obesity. Having an objective of brain clarity rather than weight or specific blood values has meant that I’ve been able to take control of my health much more than if I solely relied on medication and then wondered why I was still malnourished to the point of continuing to seek energy in foods which are basically poison to me. Giving myself parameters with well-defined processes has significantly empowered me and raised my confidence levels to collaborate with my health care team. I am now listened to and heard.

Jacqueline_Bowman-Busato

Jacqueline Bowman-Busato

As a patient representative, Jacqueline has advised the Innovative Medicines Initiative (IMI) on patient engagement strategy, and provides expert advice to the European Commission on self-care policies. She works extensively on European as well as global projects bringing the key stakeholders together to build lasting consensus on global, regional and national levels.

Empowerment through self-management

Science very clearly states that obesity is a chronic relapsing disease. It‘s not the fault of one or other individual. In my world, that does not mean that I have to accept whatever medication I’m given in isolation. It means that I use the treatment (in my case the radical treatment of bariatric surgery) as a tool and I supplement with my own process for mental and physical wellbeing to put me on an even playing field to be able to optimise the medical treatment. Self-management empowers me to engage with the system and my health professionals. It allows me to give myself a bit of certainty which is not anxiety causing. It allows me to feel a partner in my own health. Self-management has empowered me to better know and understand myself on so many levels.

21. July 2020