Browse posters submitted for today’s event. They are from a range of organisations, focusing on different lung conditions and activities. Click on each poster image to enlarge it. Some of the posters have an audio recording alongside which you can click on to hear a presentation about the poster.
ELF Travel Grant awardees 2020
Winners of the ERS/ELF travel grant for best abstract in patient-centered research
The educational needs of people with bronchiectasis in a pulmonary rehabilitation setting
AL Lee, R Smith, C Osadnik, P King, R McAleer
Department of Physiotherapy, Monash University, Victoria, Monash Lung and Sleep, Monash Health, Victoria, La Trobe Rural Health School, La Trobe University, Australia
Background: Pulmonary rehabilitation is recommended for people with bronchiectasis. However, the topics of education relevant to this population included within pulmonary rehabilitation are unknown. This study aimed to explore the perspective of people with bronchiectasis on educational topics which could be included as part of a pulmonary rehabilitation program.
Methods: Participants with bronchiectasis undertook a semi-structured interviews with transcripts coded independently and themes established by consensus.
Results: Twenty-one people participated. Major themes from the interviews were greater clarity on the prognosis of their condition and guidance for self-management strategies. Participants sought information on airway clearance therapy options and the role of exercise therapy. Participants wanted clinicians to provide treatment strategies for extra-pulmonary symptoms. Preferences were mixed for the education delivery model.
Conclusions: The unmet education needs of people with bronchiectasis provides a foundation for the development of education topics and material which could be offered within a pulmonary rehabilitation setting.
Reasons for inhaled corticosteroid non-adherence by African American adults during primary care visits for uncontrolled asthma
M. George, A. Bilazarian, A. Chung, K. South, A. Norful
Winner of the ERS/ELF travel grant for Healthy Lungs for Life
Do you know if your patient can cross the traffic light during the green period? – a prospective observational study
Frequently, a minimum speed of 1.2 m/sec is necessary to cross a traffic light during the green period. Our primary aim was to investigate the effects of pulmonary rehabilitation (PR) on walking speed in patients who initially do not reach the critical threshold of 1.2m/sec. 46 subjects with severe COPD or interstitial lung disease (ILD), participating in a 3-week inpatient PR were included in this trial. Only patients with a walking speed <1.2m/sec were considered for final analysis. Primary outcome was the change in 4m gait speed assessed from pre to post PR. As a secondary outcome, gait speed was measured in a laboratory as well as in a real life setting on a distance of 11m which reflects a common distance between 2 traffic lights. In 40 subjects with COPD or ILD, walking speed increased by +0.16m/sec (p<0.0001) in the 4m gait speed test and by +0.10m/sec (p<0.001) in the 11m gait speed test during PR. In 20-22% of patients (n=10), PR resulted in an increase of walking speed above the threshold of 1.2m/sec. PR improves walking speed in patients with severe COPD or ILD. After PR, 20-22% of patients gained the skill to cross the traffic light during the green period which might reduce an important barrier in patients daily life activity.
Patient Organisation posters
SARS CoV2 and Sarcoidosis in Italy: the results of an ACSI survey
Following prof. Bob Baughman (Cincinnaty Universitity, USA) proposal, Amici Contro la Sarcoidosi Italia started an online survey in order to understand how the SARS CoV2 pandemic hit the Italian people suffering from Sarcoidosis. The same questionnaire was deployed twice: the first one was submitted in April, during the disease peak time in Italy, the second one in July. More than 700 people took part in the first round, while more than 500 answered to the second one.
The outcomes of this study showed that a very low number of people suffering from Sarcoidosis have been affected by COVID19. Furthermore, the severity of the pathology was unexpectedly low.
Alpha-1 Global - A programme of the Alpha-1 Foundation
The Alpha-1 Foundation and Alpha-1 Global, a program of the Foundation, provide many resources to Alphas worldwide. We conduct global communications outreach through a variety of mediums, including social media, eNewsletters, a magazine, a webinar series, virtual education days and a national conference. Following the onset of the COVID-19 pandemic, the Foundation pivoted many of its programs to the virtual world in order to maintain its outreach to the Alpha-1 community. The Foundation’s webinar series has featured many wellness sessions, with emphasis on mental health and ways to cope both socially and psychologically during the pandemic. The Alpha-1 Foundation and Alpha-1 Global have also worked with US policymakers and collaborators to successfully advocate for home infusions and expanded telehealth services for patients.
Asthma Society Ireland
Impact of the Asthma Society of Ireland during the COVID-19 pandemic
The Asthma Society of Ireland has worked hard from the beginning of the pandemic to provide our members with up-to-date and accurate information. This has been a difficult time for those with an underlying respiratory condition and we have increased our service provision to meet the need of asthma patients. Our free Adviceline has since expanded to include our new Beating Breathlessness WhatsApp messaging patient support service. We provide patients with the opportunity to speak to an asthma and COPD nurse specialist for free about their medication use and compliance, COVID-19 restrictions, and general condition management. The Asthma Society will continue to support asthma and COPD patients in Ireland as the pandemic evolves and changes.
Contact: Anna Marie Bourke: email@example.com
Bulgarian Society of Patients with Pulmonary Hypertension
Czech Civic Association Against Lung Diseases (ČOPN) has changed its name and aims
ČOPN is Czech national lung patients´ organisation, participating in patients´ organization activities on both national (incl. Ministry of Health) and international level (ELF, EFA, COPD Global). The professional guarantor of ČOPN activities is Czech Pneumological and Phthisiological Society.
FFAAIR - Asthma History for Patient Care
It is new book published by FFAAIR member Liliya Belenko Gentet "
How to help asthma patients to manage asthma?. The inevitable condition: to bring asthma under control is to learn a lot of things about the disease and to apply them in everyday life. The patient education can help, and at the same time it is not always effective . The author describes her path in communication with patients: the asthma school, the Club, the games, the events and as the important point - the Asthma Museum. The book proposes to put the history of asthma at the service of care. The development of scientific knowledge, medications, devices can help to understand and accept the disease and the treatment.
The little stories of patients, their testimonies can be useful too. And if a smile accompanies our learning, it is less tiring.
The book is intended for young healthcare professionals, medical students and of course asthma patients.
Development and preliminary evaluation of the effects of an Mhealth web-based platform (HappyAir) on adherence to a maintenance program after pulmonary rehabilitation in COPD patients: randomised controlled trial
Pulmonary rehabilitation (PR) is one of the main interventions in preventative and long term clinical care that can lead to better health outcomes for patients as well as potentially reducing the excessive use of health resources, and, therefore, it could promote a reduction in chronic obstructive pulmonary disease (COPD) costs. mHealth systems in COPD aim to improve adherence to maintenance programs after PR by promoting the change in attitude and behavior necessary for patient involvement in the management of the disease. Objective: This study aimed to assess the effects of an integrated care plan based on an mHealth web-based platform (HappyAir™) on adherence to a 1-year maintenance program applied after PR in COPD patients.
Contact email address: firstname.lastname@example.org
Associations between fatigue and daily, physical and
emotional functioning among patients with sarcoidosis
Swiss Sarcoidosis Association
University of Applied Sciences and Arts Western Switzerland
Lausanne University Hospital Chatelain S. et al.
Sarcoidosis is a disease that can affect all organs of the body, especially the lungs. The symptom most often described by patients is intense and pervasive fatigue, which can persist even after the signs of disease activity have disappeared. Literature shows that this fatigue affects patient's quality of life in several areas of daily life. The aim of this cross-sectional study was to examine the link between fatigue and daily life activity (ADL) achievement as well as physical and emotional functioning. Twenty-four patients with sarcoidosis completed two questionnaires measuring fatigue (FAS) and those three health status domains in sarcoidosis (SHQ). Using Pearson’s correlations, results show an association between fatigue which is strong for ADL achievement (r=-.70; p=<.001) and moderate for emotional functioning (r=-.41; p=<.05). No association was found between fatigue and physical functioning (r=.04; p=<.87). In order to manage the negative impact of fatigue on a daily basis, some patients require support. Cognitive therapies and psychoeducation seem to be particularly indicated in those situations.
Aspergillosis – a Hidden Threat
Aspergillosis is a disease caused by Aspergillus, a kind of mould. The spores are found in the air and soil. For most people these spores are harmless, but can cause problems for those with immune deficiencies or severe asthma, bronchiectasis, cystic fibrosis, COPD or TB. When disease occurs, it can take several forms: AB, IA, CP, FRS, ABPA, SAFS.
Symptoms vary depending on the type of aspergillosis but can include: weight loss, fatigue, fever, cough, mucous plugs, coughing blood (haemoptysis), breathlessness. Treatments: steroids, antifungals, sometimes surgery.
Early diagnosis makes treatment easier and improves outcomes but is difficult. Diagnostic odyssey (time taken from initial disease recognition or symptom onset, to final diagnosis) is real for people with aspergillosis and their families. In fact 60% of people responding to a poll said they waited 1-5 years for diagnosis. Better awareness amongst healthcare professionals is needed.
The Pulmonary Fibrosis Trust
The PF Trust was founded in 2001 by patients for patients. Our main aim is to do what we can to help those affected by this life limiting illness. Living with a progressive and incurable disease presents many difficulties. Often, those diagnosed are left bewildered and overwhelmed by their condition, leaving them feeling alone in having to cope. Whilst we sadly do not have a magic wand to wave away all their anguish, we can offer some help in making their lives that little bit more bearable. We do this by arranging practical help to give them an enhanced quality of life. Mobility is a major concern, being unable to walk or travel far, without causing distress. So, we can provide mobility scooters and portable oxygen concentrators. We also raise awareness whenever possible. We rely entirely on donations to enable us to do what we do.
Butterfly in Blue - Ongoing fundraising and awareness campaign with focus on a beauty concept
Pulmonary Hypertension is a chronic and serious lung and heart condition. With medication, the life expectancy of patients are, however, greatly improved. Through our ‘Butterfly in Blue’ concept, we try to achieve both fundraising and awareness. The latter is important to get patients diagnosed as early as possible. The fundraising is especially important in Ukraine as we need money to maintain a strong association. Because through our work, we influence the local and central health decision makers. Our work has yielded results as there now are three medications available free of charge to the Ukrainian PH patients. We need to continue our work, however, in order to get even more medication out to the patients and get more undiagnosed patients under treatment.
Working together - A multi organisation approach to improve lung cancer referrals
Pressure on lung cancer clinics was resulting in delayed diagnosis. Some referrals made without imaging, reducing clinic slots for a meaningful first appointment.
Several patients referred without CXR or reason and some as emergency. A multi organisation approach was used to improve the referral process.
A short video was created with contributions from a patient, CRUK GP facilitator, CNS, chest physician, promoted via primary care newsletter and cancer training event.
Key aspects were
A short video enabled easy access, widely disseminated to all practices
Including the video within Primary care learning event increased reach
Showing different perspectives including patient story emphasised the message
West Midlands Cancer Alliance endorsed the video on its website
The multi-organisational approach developed by the Cancer Steering Group enabled better understanding and new ways to address the issues.
Awareness and pneumonia knowledge: where to start educating?
Cilloniz C, Vargas C, Dominedo C, Garcia-Vidal C, Moreno L
Approximately, 10,000 people die every year in Spain due to pneumonia. However, there is a lack of knowledge about pneumonia in the general population. We evaluate the perception and knowledge about pneumonia in order to start an education and awareness program.
A survey was carried out on adult individuals, from August to December 2019. The knowledge was assessed using a survey of 14 questions about pneumonia. A total of 500 people answered the survey. 47% were men, average age 70 years, 45% had a university education. 90% had heard about pneumonia, 80% was able to correctly define pneumonia as a lung infection, 20% had a previous episode of pneumonia, 73% recognized smoking as risk factor, however 27% were not sure of it or did not know it, 72% didn't know about the complications of pneumonia, especially cardiac complications. Only 9% knew about the long-term mortality of pneumonia, 60% know about the existence of pneumonia vaccines, only 14% knew the indication for vaccination.
Pneumonia education and awareness should focus on teaching about risk groups, risk factors, complications, vaccines and other preventive measures