ResQ Family: Impact of Respiratory Syncytial Virus (RSV) Hospitalisation on Quality of Life of Families – A Multi-Country Study

NEW PUBLICATION RELEASED: RESQ FAMILY DESCRIPTIVE PAPER

Following the launch of the ResQ Family Study in 2022/23, we are very delighted to present our latest publication: The Multifaceted Burden of Respiratory Syncytial Virus (RSV) Infections in Young Children on the Family: A European Study

This publication provides an overview of the overall and country-specific descriptive findings on the impact of an RSV-induced infant hospitalisation on the entire family and outlines not only RSV-related symptoms but also parenteral health-related quality of life dimensions. Besides, country-specific results focusing on parenteral feelings in relation to the child’s health status, health literacy and disease awareness, and the quality of communication and support structures from healthcare providers are also addressed. For further information please click the button below.

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 Head of Scientific Affairs and Research

Ilona Trautmannsberger Project Manager

Prof Luc Zimmermann Senior Medical Director

Silke Mader Chairwoman of the Executive Board

Catherina Witte Head of Communications

Ina Adamek  Communications Manager

Laura Staudt Graphic Designer

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 Danièle 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

ResQ Family Study Protocol

To learn more about the background and methods of the study, we kindly invite you to take a look at the ResQ Family study protocol, which provides the scientific basis of the project. It defines the study design and objectives, describes the involvement of relevant stakeholders such as affected parents but also healthcare professionals and researchers experienced with RSV and explains the recruitment of the study population. For further information, please click on the button below!

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.

We ended the year 2022 hosting another digital update call with our ResQ Family study group. The goal of this expert exchange was to further strengthen our recruitment strategy in all four participating countries and expand our network. Our sincere thanks go to all experts for their valuable contributions and we look forward to advancing this important research in 2023!

We started the new year 2024 coming together with our expert group for an update on the ResQ Family project. Together, we discussed planned publication, communication and dissemination activities and defined upcoming milestones and tasks for 2024. As RSV-related hospitalisations will continue to represent a significant challenge for the healthcare system in the future, it is important to keep raising awareness of the relevance of the disease to ultimately improve future care of affected families. Our sincere thanks go to all experts for their valuable contributions and to all affected families who participated in the survey. We are excited to continue working on this important project! 

Since the launch of the ResQ Family study in September 2022, the ResQ Family team attended several national and international conferences and congresses to explain the aim of the study, to inform about the progress of the project and to present some first results. Below you can find an overview of the various conferences and congresses in which we have actively participated with our research project. 

EFCNI’s Parent Organisation Summit (POS), 2022 

At the Parent Organisation Summit (POS) in Freising in May 2022, the project was internally introduced to our corporate partners and international network of patient and parent organisations. In their presentation, Dr Christina Tischer, Head of Scientific Affairs and Research, and project manager Ilona Trautmannsberger, pointed out the global burden of RSV in children and emphasised the necessity to provide scientific evidence on the impact on quality of life of families experiencing hospitalisation of their child due to RSV infection.  

12th International RSV Symposium Belfast (RSV2022), 2022

At RSV2022 in Belfast in September 2022, the ResQ Family project was officially presented to the public and the recruitment process for the survey was launched on the EFCNI communication channels. Dr Christina Tischer attended the symposium with a poster presentation to introduce the research project to the experts on-site. Participants had the chance to learn more about the study aim and objectives, study design, methodology as well as project milestones. 

7th ReSViNET Conference (RSVVW23), 2023

In February 2023, Dr Christina Tischer and Ilona Trautmannsberger travelled to Lisbon, Portugal, to attend the 7th ReSViNET conference on novel RSV preventive and therapeutic interventions with a poster presentation. Experts on-site were invited to find out more about the methodology of this project and to gain an insight into the first quantitative and qualitative results of the study. Besides, this networking event offered the opportunity to raise awareness for the recruitment of further survey participants. 

EFCNI’s Parent Organisation Summit (POS), 2023

At the Parent Organisation Summit (POS) 2023, the current project status and milestones were presented, and Dr Christina Tischer and Ilona Trautmannsberger gave the audience first insights into preliminary study results concerning patient characteristics, parental health related quality of life as well as health literacy and support structures. Besides, the emotional quote of PEG member Dr Barbara Plagg was presented, summarising the worries and concerns of affected families.  

Congress of joint European Neonatal Societies (jENS), 2023

As the data analysis process has advanced, Dr Christina Tischer presented further results of the ResQ Family study as well as a preliminary conclusion at the jENS congress in Rome in September 2023. Based on the results analysed, an initial call to action was published, highlighting the need for greater disease awareness and the importance of prevention measures among healthcare professionals, patient representatives and decision-makers.  

Excellence in Pediatrics (EiP), 2023

ResQ Family project manager Ilona Trautmannsberger gave a presentation at the Excellence in Pediatrics (EiP) congress in Paris in November 2023 and provided further insights into the impact of RSV related hospitalisations of infants on different dimensions of quality of life of affected families. Findings that were presented were related to RSV symptoms and parental worry about symptoms, parental feelings in relation to the child’s health status during hospitalisation as well as health literacy and general family support. 

Further conferences and congresses with ResQ Family contribution will follow in 2024! 

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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[2] Díez-Gandía E et al. The impact of childhood RSV infection on children’s and parents’ quality of life: a prospective multicenter study in Spain. BMC Infect Dis. 2021 Sep 6;21(1):924. doi: http://doi.org/10.1186/s12879-021-06629-z

[3] Lapillonne A et al. Impact on parents of bronchiolitis hospitalization of full-term, preterm and congenital heart disease infants. BMC Pediatr 12, 171 (2012). doi: http://doi.org/10.1186/1471-2431-12-171

[4] Leidy NK et al. The impact of severe respiratory syncytial virus on the child, caregiver, and family during hospitalization and recovery. Pediatrics. 2005 Jun;115(6):1536-46. doi: http://doi.org/10.1542/peds.2004-1149

[5] Li Y et al. Global, regional, and national disease burden estimates of acute lower respiratory infections due to respiratory syncytial virus in children younger than 5 years in 2019: a systematic analysis. Lancet. 2022 May 28;399(10340):2047-2064. doi: https://doi.org/10.1016/S0140-6736(22)00478-0

[6] Mazur NI et al. Respiratory Syncytial Virus Network (ReSViNET). Lower respiratory tract infection caused by respiratory syncytial virus: current management and new therapeutics. Lancet Respir Med. 2015 Nov;3(11):888-900. doi: https://doi.org/10.1016/S2213-2600(15)00255-6

[7] Mazur NI et al. Respiratory syncytial virus trials and beyond. Lancet Infect Dis. 2015 Dec;15(12):1363-5. doi: http://doi.org/10.1016/S1473-3099(15)00304-7

[8] Rha B et al. Respiratory Syncytial Virus-Associated Hospitalizations Among Young Children: 2015-2016. Pediatrics. 2020 Jul;146(1):e20193611. doi: http://doi.org/10.1542/peds.2019-3611

[9] Shi T et al. RSV Global Epidemiology Network. Global, regional, and national disease burden estimates of acute lower respiratory infections due to respiratory syncytial virus in young children in 2015: a systematic review and modelling study. Lancet. 2017 Sep 2;390(10098):946-958. doi: http://doi.org/10.1016/S0140-6736(17)30938-8

[10] Varni JW et al. The PedsQL Family Impact Module: preliminary reliability and validity. Health Qual Life Outcomes. 2004 Sep 27;2:55. doi: http://doi.org/10.1186/1477-7525-2-55

[11] Wang X et al. Respiratory Syncytial Virus-Associated Hospital Admissions and Bed Days in Children <5 Years of Age in 7 European Countries. The Journal of infectious diseases. 2022. doi: http://doi.org/10.1093/infdis/jiab560

[12] Zhang S et al. Cost of Respiratory Syncytial Virus-Associated Acute Lower Respiratory Infection Management in Young Children at the Regional and Global Level: A Systematic Review and Meta-Analysis. The Journal of infectious diseases. 2020. doi: http://doi.org/10.1093/infdis/jiz683

Transparency: EFCNI received a research grant from Sanofi in support of this independent study.

In collaboration with:

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