Spotlight On The Future For Patients With Chronic Respiratory Disease

SPOTLIGHT ON THE FUTURE FOR PATIENTS WITH CHRONIC RESPIRATORY DISEASE

Jenny Sims reports on the AGM of The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA).   

On the landmark day a restaurateur was jailed for six years for manslaughter for selling a curry containing nuts to a peanut allergy sufferer, allergy patients’ leaders from throughout Europe were meeting in London to discuss ways of raising allergy awareness and improving lives.

The anaphylactic death of Paul Wilson, 32, brought the minefield of “may contain” allergy labelling and “non-compliance” into sharp focus at EFA’s two-day meeting at the Devonport House, Greenwich, May 23-24.

Allergy UK, hosts and organisers of the London event, responded with a statement warning of the risks of severe food allergies and anaphylaxis.

Amena Warner, head of clinical services, said: “Food allergy, like peanut allergy, can cause symptoms that in some cases are so severe that they result in fatality.

“Food labelling legislation was introduced in December 2014 to help people identify and know exactly what is in their food, such as the 14 most common foods to cause an allergic reaction. Still, accidental exposure may occur.”

She went on to advise that a severe allergic reaction should be treated as an acute emergency, an ambulance should be called, and “if the person carries adrenalin, this should be administered.”

Non-adherence in adolescents

Asthma patients’ non-adherence to medication (e.g. non-carrying of inhalers and EpiPens), particularly among adolescents, and a “lack of awareness” continue to be Europe-wide problems, as discussions among members from 41 different countries and 25 different patients’ organisations showed.

A recent EFA/University of Maastricht survey* into health literacy of young patients with asthma and adherence to treatment”, presented by Antje Fink-Wagner, sheds some light on the problems.

The survey of 200 adolescents aged 12-17 in France, Germany, Spain and the UK from July to October 2015 asked questions about asthma severity, attitude, treatment, role of physicians and health status.

The report says: “Surprisingly there was no significant difference in adherence for any of the demographic variables such as age and gender, nor for the severity of asthma.

“German adolescents reported the highest degree of adherence. Attitude and daily impact are two factors identified that could explain the variety of adherence widely, especially in association with forgetfulness, rebellion, good days, support, carelessness and ignorance.”

The study also found “a weak but meaningful interconnection with health literacy” and that adolescents “have high trust in health professionals” which “encourages healthcare professionals to play a mentoring role in advising young patients in their everyday decisions on managing their asthma.”

Another surprise finding was “the more sport, the less adherence to medication.

Based on the findings the researchers make recommendations in four areas:

  • Multidisciplinary care coordination: Including, determine criteria to identify when “rebellious patients” should require extra support.
  • Health Information technology: Including, use of smart ICT tools to support self-management.
  • Patient empowerment, education and management: Including, guidelines on health literacy to make tools more efficacious.
  • More research on medication adherence: Including, the costs and long-term consequences of poor adherence.

All the adolescents in the study were recruited by their GPs or physicians. But the study was a small one, and Ms Fink-Wagner admitted: “More research is needed.”

Meanwhile, the challenge for EFA and its members was to disseminate current research findings, and encourage their adoption by policy makers, health services, clinicians and patients.

Asthma Research: London-Malaga Declaration

Members signed and added their organisations’ logos to the London-Malaga Declaration. This recognises and welcomes work already being carried out, particularly by the European Asthma Research and Innovation Partnership (EARIP) – the EU-funded project aimed at reducing asthma deaths in Europe by 25% within 10 years and by 50% within 20 years.

The Declaration commits to promoting higher investment and prioritising: diagnostics, triggers and risk factors for asthma and exacerbations, asthma management and adherence to treatment.

And it concludes with a challenge to the UK:  “In view of the upcoming United Kingdom Presidency of the Council of the European Union (July-December 2017), we call upon the Government of the UK to include asthma research among the priorities of the Council of the European Union for the period July 2017 – December 2018.”

Food Allergy Working Group

Harmonisation of information on food labelling to assist allergy patients travelling abroad was a key concern for the group comprising organisations from 10 different EU countries including the UK (Action Against Allergy, and Allergy UK).

Roberta Savli, EFA’s senior EU policy adviser, asked for comments, having informed the group that EFA had been invited by DG SANTE to present the patients’ perspective in a workshop organised by them with the Joint Research Centre on the harmonisation of approaches for informing EU allergen labelling legislation, June 15-17.

Concern was expressed by several members about safe labelling of ingredients and about precautionary “may contain” labelling.

Netherlands’ organisation chair, Erna Botjes, said having a completely safe food product was impossible, but added: “Having thresholds will reduce the reactions to mild or acceptable levels for almost all allergic people.”

However, she warned of the risks of having very low threshold levels – currently under discussion in the Netherlands.  This would mean the allergen would have to be labelled in the ingredients’ list, even if it was present in an indiscernible concentration.

Another problem with precautionary labelling would be that products carrying these labels would not be recalled in unsafe incident cases.

The group agreed there was a need to promote clear and structured sanctions in cases of non-compliance of EU regulations.

Ms Savli, reporting on discussions with the Commission’s unit for nutrition, food composition and information, said new guidance (including a chapter on allergens), is due to be launched soon (before summer).

She also told the group: “The Commission is not planning to work on the harmonisation of pictograms.”    This need had been highlighted by working group members during its last teleconference.

During a discussion of projects, priorities and concerns, Carla Jones, Allergy UK’s CEO, presented its allergy awareness project for schools. Food Allergy Italia reported it had developed a management action plan for allergic children and adults. Lithuania reported “a big problem with administering adrenalin in schools.”  Neither teachers nor nurses were allowed to administer it, which was posing a danger to allergic children.

Environmental determinants/Air Quality Working Group

Members were alerted to a meeting on 8th June on the national emissions ceilings directive.

Roberta Savli said EFA had been working for two years for “a directive that is more protective of public health” and this would be their last opportunity to influence the National Emissions Ceilings Directive.

The European Commission has recently proposed reviewing the carcinogens and mutagens directive which aims to limit exposure of workers to certain chemicals.

It was agreed the group would develop a set of criteria for indoor air quality for EFA to advocate.

COPD Working Group

It emerged there is a vast unmet need of COPD patients throughout Europe. Problems include: lack of diagnosis or late diagnosis; lack of free spirometry testing in some countries, e.g Belgium; a lack of awareness of the link between smoking and the disease; and guidelines not being implemented.

The group’s findings fitted with the Written Declaration on Chronic Respiratory Disease promoted by EFA, and members were asked to lobby their MEPs to sign the initiative.

Spanish delegate, Javier Palicio, said his organisation was working on a project making a video series for COPD patients promoting physical and respiratory exercises.

Project ideas for the group for the coming year included: a smoking cessation programme for pregnant women, understanding why smoking is “trendy” and its relationship with alcohol; promotion of spirometry testing to improve early diagnosis; increase awareness of “lung function” and the impact of co-morbidities  such as osteoporosis, depression, heart conditions and rheumatism.

Austrian delegate, Otto Spranger, proposed developing a project on therapies for emphysema, in partnership with other organisations in the field.

Patient Education Working Group

The group aims to improve patient access to quality information and education through partnerships, identifying and sharing best practices.

It decided to carry out a patient education survey among EFA members, to set a baseline on how patient education is organised in different European countries, and examine the approach adopted by  members to boost allergy, asthma and COPD literacy among patients.

At the AGM’s House of Commons’ dinner, hosted by Stephen McPartland, MP, chair of the All Party Parliamentary Group for Allergy and Respiratory Health,  Allergy UK’s CEO, Carla Jones,  said: “By uniting patient groups across Europe we can influence policies collectively and make direct changes for people with allergies, not only here in the UK but all over Europe.”

References & resources

*HEY YA! Health Literacy, Young Patients with Asthma and Adherence to Treatment: EFA Report and European Recommendations  www.efanet.org

Jenny Sims is a freelance medical journalist specialising in healthcare management and policy.

Twitter: @Jenny Sims
Copyright Jenny Sims

Key statistics

  • Asthma affects 5.4 million people in the UK, one in every 11 people and one in five households.
  • Allergy affects 21 million people in Britain and is expected to affect more than 50% of all Europeans in 10 years’ time
  • Chronic Obstructive Pulmonary Disease (COPD) will become the third cause of death by 2020 worldwide.
  • 30% of the European population lives with allergy, asthma and COPD.

 

This report first appeared in Allergy Newsletter No. 117, Summer 2016.

By | 2016-12-12T13:16:24+00:00 August 2016|COPD, Labelling, Legislation, News|0 Comments