‘Family’ and ‘leisure pursuits’ ranked higher than ‘health’ for heart patients.

Emily Basquille at the World Research Congress of the European Association for Palliative Care

An award-winning Mayo study has been accepted for presentation at the International Palliative Care Network Conference, which runs online from November 15th – December 15th, 2018.

NUI Galway graduate, Emily Basquille’s study on the needs of a cardiac population, using a subjective quality of life measure, received a ribbon award last May at the 10th World Research Congress of the European Association for Palliative Care in Bern, Switzerland. Emily attended the congress with support from Marie MacCabe, principal of St. Joseph’s Secondary School, Castlebar, where Emily currently works as a Special Needs Assistant.

The study, which was a collaboration between local heart & stroke charity Croí, NUI Galway and Prof Dympna Waldron of Galway University Hospital, was the first time that a subjective Quality of Life measure was tested on a cardiac population in Ireland.

“Emily’s research with the Croí Cardiac Support Group has provided us with interesting insights, reinforcing our goal of putting the patient first in cardiovascular healthcare,” says Croi’s Chief Executive, Neil Johnson.

The findings show that 45% of participants did not rate ‘health’ in the first five of their chosen quality of life cues, but rather selected ‘family’, ‘leisure pursuits’ and ‘social aspects of life’ as their top three most important quality of life indices.  The group also experienced significant symptom interference, such as sudden tiredness and grogginess, with their Quality of Life. The study found a negative correlation between symptom interference and Quality of Life, with high levels of symptom interference associated with low levels of Quality of Life.

“The results really highlight the importance of putting a patient’s perspectives and needs first, emphasising the value of taking into account a person’s Quality of Life cues when creating a personalised treatment plan,” says Basquille.

Emily Basquille’s presentation at the upcoming International Palliative Care Network Poster Exhibition can be accessed at www.palliativecarenetwork.com by registering for a free account.

Cardiovascular Patients’ Declaration

Cardioalianza presents the “Cardiovascular Patients’ Declaration Regarding Therapeutic Adherence”, in which 10 European cardiovascular patients’ associations come together to promote greater therapeutic adherence.

  • The “Cardiovascular Patients’ Declaration Regarding Therapeutic Adherence” is an initiative promoted with the purpose of achieving better therapeutic compliance of cardiovascular patients to reduce risk, prevent possible incidents and improve their quality of life.
  • It was created with a document that includes proposals for improvement aimed at all health agents involved in caring for cardiovascular patients: health professionals, public administration and patients. 
  • The Patients’ Declaration is an initiative of Cardioalianza, which another nine cardiovascular patients’ organisations in Europe have already joined.
  • In Spain, one in every two cardiovascular patients does not follow the therapeutic recommendations agreed with the healthcare professional, which leads to worse control of the disease, a greater number of complications and a higher cost for the healthcare system.

Madrid, 5 July 2018. Cardioalianza, the national cardiovascular patients’ association that brings together more than 50 local associations and has more than 21,000 patient members, today presented the “Cardiovascular Patients’ Declaration Regarding Therapeutic Adherence”, a document that has been endorsed by nine other European patient organisations and that has been possible thanks to the collaboration of Ferrer.

In Spain, one in three deaths is due to a cardiovascular disease. Specifically, diseases of the circulatory system caused 30% of deaths in Spain in 2016[1], making it the leading cause of death, ahead even of tumours and respiratory diseases.

Although it is true that in recent years the trend is that there are fewer and fewer deaths caused by a cardiovascular disease (myocardial infarction, stroke, heart failure, etc.), many people who do survive are coping with a disability and become chronic patients for life.

Faced with this situation, the World Health Organisation (WHO) warns that the majority of cardiovascular diseases could be prevented by promoting healthy lifestyles: a balanced diet low in fat, regular exercise, stopping smoking and reducing alcohol consumption, in addition to controlling cardiovascular risk factors, such as high blood pressure, cholesterol, diabetes and obesity, which also often require specific drug treatment.

In this sense, the studies carried out so far indicate that in Europe cardiovascular patients’ adherence to the treatment is just 57%[2], whereas in Spain it is somewhat lower, 56%, which means that only one in every two patients with a cardiovascular disease correctly follows the prescribed treatment[3].

“Undoubtedly, this data shows that therapeutic adherence involves a complex behaviour and that patients need to work on new strategies that encourage following the guidelines set by the healthcare professional, since all the studies carried out indicate that good therapeutic adherence is related to improved life expectancy and quality of life for the patient”, says Maite San Saturnino, president of Cardioalianza.

The importance of good therapeutic adherence

Therapeutic adherence is the degree to which the behaviour of a person in relation to their illness (taking the medication, following a diet and carrying out changes in the way of life) corresponds to the recommendations agreed with the health professional.

In this sense, “failure is at the origin of many medical and psychosocial complications of the disease. It has been seen that it reduces the quality of life of patients, increases the probability of the appearance of resistance to drugs and wastes healthcare resources”, says the WHO.

Specifically, and as stated in the document, non-compliance with the treatment entails more incidents related to cardiovascular diseases for the patient, which can lead to a worse quality of life or even death. On the other hand, for the healthcare professional this breach implies an increase in the care burden, due to repeated complications, which in turn are increasingly severe, and the consequent hospital admissions. This also has a direct impact on the health system, generating higher economic costs and worse health outcomes.

Thus, “the lack of therapeutic adherence is one of the most significant aspects to fight in order to achieve good prevention of high-risk cardiovascular patients”, stresses the president of Cardioalianza.

To improve this situation and empower patients, helping them to be aware of the role they play in caring for their own health and involving them in the decisions related to their cardiovascular disease, Cardioalianza is promoting the Patients’ Declaration.

“Cardiovascular Patients’ Declaration Regarding Therapeutic Adherence”

The “Cardiovascular Patients’ Declaration Regarding Therapeutic Adherence” is a document designed to promote therapeutic adherence (pharmacological and non-pharmacological) of patients with a cardiovascular disease that aims to prevent acquired disability after suffering an incident and reducing the number of avoidable deaths, in order to improve the well-being and quality of life of patients and their families.

Thus, from Cardioalianza and with the support of nine other European patient organisations that have signed the document, all health agents involved in the patient’s cardiovascular health are urged to work to improve the levels of therapeutic adherence, for which a series of proposals addressed to the patients and to health professionals and the public administration has been described.

Specifically, they focus on promoting a series of changes, such as empowering patients by involving them in the decisions that affect their disease, simplifying therapies so that they adapt better to the patient’s profile, the need to establish better doctor-patient communication, designing specific programmes to control adherence, providing patients with tools that enable them to better manage medication, promoting public campaigns on the importance of controlling risk factors, etc. In short, a series of proposals focused on improving the control of cardiovascular risk factors in addition to achieving greater therapeutic adherence.

“As patients and agents involved in health care, we must work together with professionals and the public administration to promote heart-healthy environments that encourage self-care, especially among those who have already suffered a cardiovascular incident and who, therefore, are at greater risk”, says Maite San Saturnino.

European entities signing and endorsing the Declaration:

  • Associazione per la Lotta alla Trombosi e alle malattie cardiovascolari (ALT) – Italy
  • Associazione Italiana Scompensati Cardiaci (AISC) – Italy
  • Association of Patients with Cardiovascular Diseases – Bulgaria
  • Bate Bate Coraçao – Portugal
  • Fundaçao Portuguesa Cardiologia – Portugal
  • Mon Coeur Entre Parenthèses (ASBL) – Belgium
  • SZÍVSN Országos betegegyesület – Hungary
  • CROÍ, The West of Ireland Cardiac Foundation – Ireland
  • National Institute for Preventive Cardiology (NIPC) – Ireland

* Download the Cardiovascular Patients’ Declaration Regarding Therapeutic Adherence

* Link to the project’s website and video presentation

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About Cardioalianza

Cardioalianza is an association that brings together 16 non-profit organisations, with more than 50 points of care throughout Spain that are dedicated to improving the quality of life and well-being of people with a cardiovascular disease. Its vision is to be the leading independent and sustainable organisation for patients with cardiovascular diseases  and the representative of their rights and needs before the stakeholders involved in prevention, diagnosis and treatment to achieve personalised and comprehensive care.

Its main objectives are to empower patients and patient organisations to promote active participation, cooperate with Public Administrations and other agents of the social and healthcare system to improve patients’ well-being and quality of life and generate knowledge about cardiovascular patients’ situations and needs and develop strategic alliances with other related organisations, scientific entities, professional organisations and companies in the social and healthcare industry.

For further information about Cardioalianza click here.

Cardioalianza communication:
Meritxell Mercader
+34 656 63 85 41 / +34 931061759
comunicacion@cardioalianza.org

[1] National Institute of Statistics Data (INE). Death statistics, according to cause of death. Detailed results. 2016

[2] Naderi SH, Bestwick JP, Wald DS. (2012) Adherence to drugs that prevent cardiovascular disease: meta-analysis on 376,162 patients. Am J Med; 125: 882-887.

[3] Restovic Camus, G. et al. (2016) Treatment adherence plan. Responsible use of medication. Farmaindustria and EY.

2018 World Diabetes Day #FamilyandDiabetes

The 2018 World Diabetes Day is happening on Wednesday, November 14, 2018. The campaign is led by the International Diabetes Federation, and the theme for 2018-19 is Family and Diabetes.

The primary aim of the 2018–19 campaign is to raise awareness of the impact that diabetes has on the family and to promote the role of the family in the management, care, prevention and education of the condition.

The number of people with diabetes in Ireland is growing rapidly, with the total number estimated to be 225,840.

Meet Nicola Delaney, a 38-year-old mum from Co. Tipperary. Nicola is a diabetic and a Croí programme participant. We asked Nicola to share her story in recognition of #WDD2018:

“Before, I didn’t take my health too seriously. I was borderline diabetic for years… then I was diagnosed with diabetes eight or nine years ago. I was referred to Croí for support and it really gave me a kick in the backside!”

“I finally took a stand for my health, and I feel so much better…better health, happier, overall improved. I am more mindful around my diet – why am I eating this? What are the benefits or the risks? I see it with my 12-year-old son, too. He wouldn’t eat fruit before, and now I can explain to him and educate him about food,” says Nicola.

Nicola’s words of support are “Don’t be too hard on yourself. Get help – go to your GP or Croí. There are so many resources available online too.”

#FamilyandDiabetes

Diabetes can increase your risk of heart disease or stroke. This is why the target levels for blood pressure and cholesterol are lower for people with diabetes than for other people.
Knowing the symptoms and risk factors for diabetes is important as non-diagnosis can seriously affect your quality of life. Undiagnosed or poor controlled diabetes can damage your heart, arteries, eyes, nerves and kidneys leading to serious health problems for you and your family to cope with.
You need to pay careful attention to keeping blood sugar levels in your target range and have regular check-ups for cholesterol and blood pressure. Take your medications as prescribed and try to get to and stay at a healthy weight. If you are having difficulty managing your diet, ask your GP to refer you to a dietitian for advice and support.

There is great potential to prevent type 2 diabetes in high-risk individuals by lifestyle intervention. In order to reduce the risk of developing Type 2 diabetes, it is recommended that all people have a healthy balanced diet, take regular physical activity and attain a weight appropriate to their height.

You are more at risk of getting Type 2 diabetes if you are:
• Over 40 years of age
• Have a parent or brother/sister with diabetes
• Had diabetes during a pregnancy
• Are overweight for your height
• Do not take 30 minutes of physical activity daily
• Have high blood pressure
• Have high cholesterol

And/or recognise any of these symptoms:
• Blurred vision
• Fatigue, lack of energy
• Extreme thirst
• Frequent trips to the bathroom (urination) especially at night
• Rapid and unexplained weight gain or loss
• Frequent infections
• Numbness, pain or tingling in your hands or feet

The more risk factors or symptoms that you have the more likely you are to have diabetes or pre-diabetes. Take the risk test now at www.diabetes.ie/risk

Continue reading at www.diabetes.ie

What’s the deal with carbohydrates?

Written by Croí Dietitian Aisling Harris. Extract taken from Aisling’s blog, The Superfit Foodie

Quite often when I hear a person say that they are going to try and lose weight or “the diet starts tomorrow” the first thing they say they’re going to do is “cut out the bread”.

But bread is not the enemy!*

*If you’re eating the recommended portion size.

Portion size is something that a lot of us struggle with. This is mainly because we’ve never really been told what an actual portion size should look like. I certainly got a shock when I found out! The massive portions of rice, potato and pasta or huge bread rolls that we get in restaurants or takeaways has probably distorted our idea of what we should be serving ourselves at home.

Before I explain what portion sizes should look like, I feel it would be helpful to give a quick explanation of what carbohydrates are and why we need them. Carbohydrates are our main source of energy. We need energy to keep our body running, similar to how a car needs petrol. But, like a car, we can only store a certain amount of energy or petrol at a time. Once the tank is full, petrol starts to leak out. Once our carbohydrate storage centres (muscle and liver) are full, any extra carbohydrate is converted to fat and stored in our fat tissue (our bodies are very resourceful and know that energy is a valuable resource. It doesn’t want to just dump it so it stores it where we have the most storage space – our fat tissue). However, like a car uses up petrol pretty fast, we used up our carbohydrate reserves (scientifically called glycogen) pretty fast which is why it is recommended we have a portion of carbohydrates at each meal.

So basically, you need enough energy from carbohydrates to keep your body running but you don’t want too much. But I like carbohydrates you say? I want to eat more you say? Well, thankfully there is a way you can do this…

Exercise!! Yes, just like a car uses up petrol and has to be refilled after a journey, your muscles use up carbohydrate when you exercise meaning that in order to refill them you need to eat more carbohydrates! If you aren’t very active then you’re carbohydrate needs are lower. If you eat more than you need then you will put on weight.

So, now that we, hopefully, know why we need carbohydrates, the next question is what are carbohydrates?

Well, basically they are foods that once eaten and digested are broken down into sugars (don’t panic, sugar isn’t evil either, we need it for energy).

The most common examples include bread, potato, rice, pasta, oats, cereals, grains, beans, peas and lentils. These are often called complex carbohydrates. Other foods that contain carbohydrate are fruits and dairy products. The other group of foods that contain carbohydrates are foods like sugary drinks, cakes, biscuits, bars, scones, buns, sweets etc. These are the only carbohydrate foods that you should avoid or limit.

“But I heard low-carbohydrate diets are good for weight loss?”. Technically this is true. If you don’t eat carbohydrates then your body will break down your fat stores for energy. However, long term this can have unwanted side effects. The main reason is because carbohydrates are our main source of fibre. Fibre is needed to keep things running smoothly through our digestive tract. If you don’t eat enough fibre you’re likely to become constipated and long-term it can increase your risk of developing bowel cancer.

How much carbohydrates do you need? Here I’m specifically talking about cereals, bread, potato, pasta rice and other grains. Even though fruits, dairy products and plant proteins contain carbohydrates, they have their own recommended intakes which I’ll cover in a later blog post.

Using the guide above, you can work out how many servings of carbohydrates you need per day. An inactive person would be someone with an office job who does little to no exercise. Even someone with a job that requires them to be on their feet for the most of the day can still be considered inactive as standing and walking, unless it’s at a brisk pace, does not raise your heart-rate enough to give you benefits (I know this will be disappointing to hear for anyone who spends a lot of time on their feet!).

The minimum amount of exercise adults need to do to maintain a healthy weight is 30 minutes on 5 days of the week. This exercise can be as basic as a brisk walk. If you’re just starting out then it can even be split up into shorter bouts of 10 minutes three times a day (e.g. a longer walk to work, lunchtime lap of the office building and brisk walk back to the car (maybe with a bit of a detour). You just want to get your heart-rate up a bit and your breathing to become slightly heavier.

Continue reading here: http://thesuperfitfoodie.com/2018/02/whats-the-deal-with-carbohydrates.html