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ResQ Family: Impact of Respiratory Syncytial Virus hospitalisation on Quality of life of Families

Dear parent, dear caregiver,

Thank you for your interest in the study "ResQ Family: Impact of Respiratory Syncytial Virus (RSV) hospitalisation on Quality of life of Families – a multi-country study". We kindly ask you today as a parent or caregiver of a child experiencing or having recently experienced hospitalisation due to Respiratory Syncytial Virus (RSV) infection in Germany, France, Italy or Sweden to participate in this survey.

RSV is the most common cause of paediatric bronchiolitis and pneumonia – which are both a type of lower respiratory tract infection. Globally it accounts for 2.2 million hospitalisations in infants below 12 months of age (in 2019). By the age of two years nearly all infants will be infected with RSV at least once. While most RSV cases are mild, we can’t predict which infants could get seriously ill and end up in hospital. When the RSV infection takes a severe course it might have in particular considerable impact on the health-related quality of life of families. However, until now, there is currently no adequate information on how infection and hospitalisation due to RSV in infants impacts affected families in a holistic manner.

With this survey, we aim to collect your valuable insight on how you and your family experienced the RSV episode of your child – at home and in the hospital setting.

Having unique, first-hand insights on the burden of RSV and its impact on affected families will provide scientific evidence and finally help us raise awareness among healthcare professionals and patient representatives, decision-makers and the general public.

Our study focuses on children up to 24 months with a hospital stay due to RSV infection of at least 12 hours in total. The hospital admission should not be longer than 4 weeks ago. Since we need to cover a wide range of possible disease manifestations caused by RSV, some of the questions might cause distress considering your personal situation and experience. You may of course stop your participation at any time. Ideally the parent or caregiver who has taken care of the child most of time during hospitalisation fills in the questionnaire. Completing the survey will take no longer than 20 minutes.
Ethics and data use: EFCNI handles your data lawfully and confidentially, in accordance with the General Data Protection Regulation (GDPR). No person-related data will be stored or published. Your data will be evaluated anonymously, it will not be passed on to third parties and will not be used for any other purpose than the one mentioned above. SurveyMonkey, the tool used for this survey, grants compliance with the GDPR and the Privacy Shield. In accordance with the GDPR, you have the right to information, the right to delete your data and can withdraw this declaration of consent at any time. The Ethics Committee of Maastricht UMC+ officially waived the need for ethics approval.

This research is carried out by the Scientific Affairs Department of the European Foundation for the Care of Newborn Infants (EFCNI) (www.efcni.org) and covers four European countries: Germany, France, Italy and Sweden. For this study, EFCNI collaborates with representatives of parent organisations, ReSViNET (Respiratory Syncytial Virus Network), ESPR (European Society for Paediatric Research), and UENPS (Union of European Neonatal & Perinatal Societies).

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

If you have any questions, comments or concerns regarding the study please contact: research@efcni.org

Thank you for your participation and support!
European Foundation for the Care of Newborn Infants (EFCNI)

Question Title

I confirm to have read and understood the information provided above and consent to the use of my de-identified data.

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