ResQ Family: Impact of Respiratory Syncytial Virus (RSV) Hospitalisation on Quality of Life of Families – A Multi-Country Study
PARTICIPANTS NEEDED!
Have you just rushed to hospital because your child has Respiratory Syncytial Virus (RSV)? Or have you just emerged from your child’s hospitalisation? Then you might have gone through or are still going through a very difficult time. We want to know how you are doing and how you and your family have dealt with your child’s RSV episode!
Much is still unknown about RSV and its impact. You can help with your own experience to make a difference and raise awareness about RSV and its consequences, thereby improving the quality of life of affected children and their families.
WHO CAN PARTICIPATE?
- Is your child currently hospitalised or has been hospitalised in the past 4 weeks due to RSV?
- Is your child younger than 24 months?
- Are you living in France, Germany, Italy or Sweden?
GET INVOLVED
- Research has a positive impact on people’s lives every day, but it needs volunteers. Participate in our ResQ Family study!
- Complete an online questionnaire (approx. 15 minutes) in your own language providing your personal experience:
FOR HEALTHCARE PROFESSIONALS:
Are you in contact with parents or caregivers of children experiencing or having recently experienced hospitalisation due to Respiratory Syncytial Virus (RSV) infection? Then we kindly ask you to support our ResQ Family Project with ready-to-use elements of our participant recruitment toolkit.
Data protection and contact:
In the initial survey we will ask you for your email address to later inform you of how we are working with the data you provide. Your data will be stored anonymously and according to the General Data Protection Regulation (GDPR) in Europe. Your data not stored on EFCNI website, but separate secured servers. You can read more on our data protection policy here. For questions, please get in touch with us! research@efcni.org
Overview
Respiratory Syncytial Virus (RSV) is a very contagious virus. It is the most common cause of paediatric bronchiolitis and pneumonia – which are both a type of lower respiratory tract infection (LRTI). By the age of two years nearly all children will be infected with RSV at least once. Globally, it is a leading cause of hospitalisations among young infants with approximately 33 million cases of acute lower respiratory infections causing more than three million hospitalisations each year in children younger than 5 years. While most RSV cases are mild, we cannot predict which infants could get seriously ill and end up in hospital. This is because the course of the disease is unpredictable. When the RSV infection is severe and associated with hospitalisation, it may lead to intensive care unit admissions with use of supportive care such as mechanical ventilation. It may further result in long-term complications such as recurrent wheezing, reduced pulmonary function and asthma. Moreover, RSV-related hospitalisations can be associated with a significant burden on the entire family, leading to considerable stress and increased loss of work productivity.
Aim of the ResQ Family project
Until today, there is only little information available on how severe RSV infection leading to hospitalisation of the infant impacts the quality of life of affected families. For the ResQ Family project, an online questionnaire will be used to survey parents or caregivers of children up to 24 months currently or recently hospitalised (length of hospital stay of at least 12 hours and hospital admission no longer than 4 weeks ago) due to RSV infection.
The aim of the ResQ Family project is to find out how infant RSV hospitalisation impacts the quality of life of affected children and their families. The goal is further to provide scientific evidence on the burden of RSV and raise awareness among all relevant stakeholders including healthcare professionals and patient representatives, decision-makers and the general public. The project will run until June 2024. Data collection will take place during the RSV season from fall 2022 to spring 2023 in four European countries: France, Germany, Italy, and Sweden.
EFCNI Project Team:
Dr Christina Tischer Senior Project Manager and Project Coordinator
Ilona Trautmannsberger Junior Project Manager
Dr Johanna Kostenzer Head of Scientific Affairs
Prof Luc Zimmermann Senior Medical Director
Silke Mader Chairwoman of the Executive Board
The team of EFCNI is leading the ResQ Family project. It will be conducted in close collaboration with renowned international experts, scientific advisors and parent representatives. International and local partners in the respective countries support the project. For further information, please contact: research@efcni.org
External Scientific Advisory Board (ESAB) members:
Prof Christian Apfelbacher Institute of Social Medicine and Health Systems Research (ISMHSR), Otto-von-Guericke University Magdeburg, Magdeburg, Germany
Dr Philippe Beutels Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium
Dr Brigitte Essers Maastricht University Medical Centre, The Netherlands
Prof Ulrike Ravens-Sieberer Department of Child and Adolescent Psychiatry, Psychotherapy and Psychosomatics, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany
Project Expert Group (PEG) members:
Prof Kajsa Bohlin Department of Neonatology, Karolinska University Hospital/ Karolinska Institutet, Stockholm, Sweden
Prof Louis Bont Department of General Pediatrics and Pediatric Infectious Diseases, Wilhelmina Children’s Hospital, University Medical Center, Utrecht, The Netherlands
Prof Daniele de Luca Division of Pediatrics and Neonatal Critical Care, A. Béclère Medical Center, Paris Saclay University Hospitals, APHP, Paris, France
Katarina Eglin Bundesverband “Das frühgeborene Kind” e.V. (BVDfK), Frankfurt (Main), Germany
Prof Susanna Esposito Paediatric Clinic, Pietro Barilla Children’s Hospital, University of Parma, Parma, Italy
Prof Fabio Midulla Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Rome, Italy
Prof Raffaella Nenna Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Rome, Italy
Dr Barbara Plagg Institute of General Practice and Public Health, Provincial College for Health Professions Claudiana, Bolzano, Italy
Audrey Reynaud SOS Préma, Boulogne Billancourt, France
Karl Rombo Riksförbundet Svenska Prematurförbundet, Stockholm, Sweden
Dr Sven-Arne Silfverdal Department of Clinical Sciences, Umeå University, Umeå, Sweden
Prof Catherine Weil-Olivier Pediatrics, University of Paris, 7 Denis Diderot, Paris, France
Prof Sven Wellmann Clinic for Paediatric and Young Adult Medicine, Klinik St. Hedwig Regensburg, Regensburg, Germany
Dr Martin Wetzke Clinic for Pediatric Pneumology, Allergology and Neonatology, Hannover Medical School (MHH), Hannover, Germany
On 28 April 2022, EFCNI hosted the first digital RSV expert roundtable of the new research project “ResQ Family”. A team of key experts in RSV and quality of life research, including researchers, neonatologists, paediatricians and parent representatives met online for the first time to discuss the project and study design. The results of this expert exchange will feed into an online questionnaire which will be used to survey caregivers of affected infants up to 2 years of age. Our sincere thanks go to all experts for their valuable contributions.
PARENT BOOKLET “RSV – WHY ALL PARENTS OF INFANTS SHOULD BE AWARE OF RESPIRATORY SYNCYTIAL VIRUS!” It is important for parents to be informed about all aspects of their child’s health and well-being, but also about potential risks and effective preventive measures to protect their child. On that account, we have – together with experts in the field of neonatology and paediatrics, RSV and infectious diseases – created this parent booklet which provides specific and understandable information on the important yet sometimes underrecognised topic: “RSV – Why all parents of infants should be aware of Respiratory Syncytial Virus” . The booklet summarises what you as parents should know about RSV to help you take the right measures for your baby’s health: It provides you with easy-to-understand information about RSV and its symptoms, illustrated with helpful infographics. Valuable first-hand advice from parents and doctors shows how to recognise an infection and what you as parents can do yourself to protect your child from RSV. Download your booklet copy here and enjoy reading!
RSV INFOGRAPHICS Here you will find simply illustrated information on facts and questions about RSV:
- What you should know about RSV
- What are the signs and symptoms of RSV in infants?
- Five steps to protect your baby from RSV disease
- What to consider after an RSV infection
Please feel free to download and share these infographics to educate and create awareness of this still underrecognised disease that can affect all infants.
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Transparency: EFCNI received a research grant from Sanofi in support of this independent study.
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