Study Shows RSV Hospitalizations Cause Caregivers Missed Work, Emotional Distress, Financial Concerns and Family Disruption
Waltham, Mass., May 15, 2019— Sobi, an international biopharmaceutical company transforming the lives of people affected by rare diseases, announced the publication of data demonstrating the impact of hospitalizations due to respiratory syncytial virus (RSV) on caregivers of high-risk preterm infants in the U.S. The study, which was published in the journal Clinical Pediatrics, showed that these caregivers experienced missed work, diminished work productivity, emotional stress, disruption of family routine and financial concerns, many of which persisted at least one month following hospital discharge.
The study was a secondary analysis of data collected during the SENTINEL1 study, representing observational findings from 43 hospitals across the U.S. on preterm infants born at 29-35 weeks gestation and aged less than 12 months who did not receive immunoprophylaxis for RSV and were subsequently hospitalized for RSV disease during the 2014-2015 RSV season. A subset of 212 infants’ caregivers provided feedback on perceived infant stress, perceived infant health, and productivity impairment. Data were collected at hospital discharge through one-month post discharge.
At hospital discharge, responding caregivers reported their mean stress level over the past 7 days was 5.8 on a scale of 1 to 7, where 7 was “very stressful,” while the level of stress they perceived for their infant was 5.5. These numbers improved over time, but stress was still present for both (caregiver: 2.4; infant: 2.1) at 1 month post discharge. The mean caregivers’ stress was consistently higher than the caregivers’ perception of infant stress over time. Regarding work productivity, at discharge 91% of mothers and 81% of fathers reported overall productivity loss. These numbers also improved over time, but overall productivity remained impaired for 31% of mothers and 18% of fathers at 1 month post discharge. The study also collected qualitative feedback through open-ended questions, which resulted in 742 comments with emotional impacts (i.e., stress, worry, and fear) being the most common theme.
“Despite the fact that RSV is the leading cause of infant hospitalizations in the U.S., there has been a dearth of information about how these hospitalizations impact the infants’ caregivers. This study provides insight into the burdens these families face, from the terror of watching a baby struggle to breathe to the devastation of being fired from a job because of the time off needed to be by their baby’s side in the hospital. As physicians, we need to be cognizant of the impact of a disease like this not only on the patient but across the family unit,” said Pia Pannaraj, M.D., MPH, Associate Professor of Clinical Pediatrics and Molecular Microbiology and Immunology at Keck School of Medicine, University of Southern California; attending physician at Children’s Hospital Los Angeles in the Division of Infectious Diseases; and author of the paper.
SENTINEL1 represents the largest study ever conducted in the U.S. of preterm infants hospitalized with laboratory-confirmed severe RSV disease. This secondary analysis study was published in Clinical Pediatrics in April 2019 and is available online via open access.
About Respiratory Syncytial Virus (RSV)
Respiratory syncytial virus (RSV) is the most common cause of lower respiratory tract infection (LRTI) in infants and young children worldwide and is the most common cause of infant hospitalization in the U.S. Preterm infants are at higher risk of being hospitalized for an LRTI resulting from RSV infection than infants born at term. There is currently no specific treatment approved for RSV once it is contracted, other than supportive care while the disease runs its course, making the availability of RSV prophylaxis a critical public health priority.1
About Sobi in North America
As the North American affiliate of international biopharmaceutical company Sobi™, our team is committed to Sobi’s vision of providing sustainable access to innovative therapies and transforming the lives of people affected by rare diseases. We bring something rare to rare diseases – a belief in the strength of focus, the power of agility and the potential of the people we are dedicated to serving. Our product portfolio includes multiple approved treatments, focused on immunology and genetics/metabolism. With North American headquarters in the Boston area, Canadian headquarters in the Toronto area, and field sales, medical and market access representatives spanning North America, our growing team has a proven track record of commercial excellence. More information is available at www.sobi-northamerica.com. For more information about Sobi, visit www.sobi.com.
- Adamko DJ, Friesen M. Why does respiratory syncytial virus appear to cause asthma? Journal of Allergy and Clinical Immunology. 2012;130(1):101-102. doi:10.1016/j.jaci.2012.05.024.
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