Survey Results Highlight Need for More Parent Education About Respiratory Syncytial Virus

Two national surveys—one of parents with children who have had respiratory syncytial virus (RSV) and one of health care providers who treat children with RSV—have revealed the burden of the disease beyond treating the immediate symptoms.

RSV is a highly contagious seasonal virus that affects the airways and lungs, and it can be very serious for infants and young children. It is the leading cause of hospitalization for infants younger than 1 year of age in the United States, and nearly 58,000 infants and young children are hospitalized because of RSV each year. Notably, infants younger than 1 year of age are 16 times more likely to be hospitalized for RSV than for the flu.

According to the survey findings, the impact of RSV includes serious financial challenges, strained relationships, and mental health concerns, which highlights a clear need for preventive interventions against RSV and greater disease awareness. The survey polled 340 parents who have had a child sick with RSV, whereas the provider survey polled 175 health care providers who treat infants and young children with the virus.

According to the parent survey, 67% said their child was hospitalized with RSV, 49% of whom were admitted to the intensive care unit and 40% of whom were put on ventilators. Notably, 68% said that watching their child suffer affected their mental health. Furthermore, 69% of parents felt guilty that they could not do more to prevent their child’s experience with RSV.

More than one-third said the burden of RSV placed a strain on their relationship with their partner and more than two-thirds said that RSV presented their family with a financial burden or crisis. Financial challenges included medical bills (39%), loss of potential income (32%), caregiver or childcare costs (27%), transportation costs (24%), and costs for meals or hotels during treatment (14%).

The costs of a child’s RSV experience can be significant. According to the survey results, 24% of respondents estimated the total related costs to be between $1501 and $3000.

“This sample of parents had significant emotional, social, and financial impact from their child(ren) having RSV,” said Suzanne Staebler, DNP, APRN, NNP-BC, FAANP, FAAN, a professor and leader in health policy and clinical neonatology, in the report. “Yet, based on the limited demographic data collected, one could argue that most of them do not suffer from multiple [social determinants of health]. RSV disease burden on parents and families can be anticipated to be more profound for parents that have to navigate/overcome the presents of multiple [social determinants of health].”

Additionally, 43% of parents had never heard of RSV before their child’s illness, illustrating the need for educational efforts. Of the 57% who had heard of RSV, more than half knew “only a little.” When parents found out that there was no treatment for RSV and that only supportive care could be done for their child, 48% said they felt angry, 46% felt helpless, and 37% felt frustrated, according to the survey results.

Findings from the health care provider survey show that providers are making efforts to educate patients, with 86% of respondents saying that they include RSV education as part of routine care and 99% agreeing that parents need more information about RSV. Further, 48% of providers said it was difficult to decide whether to send an infant or child with RSV to the emergency department, and nearly one-third said they have been reluctant to test for RSV because no treatment exists.

According to parents, the most common age for RSV diagnoses was between 7 and 12 months. The most common duration of illness was 4 to 6 days, during which time 89% of parents took their child to see a medical professional between 1 and 3 times.

RSV treatment also has a social burden, with more than half of respondents having to rely on family members and friends to help with childcare, transportation, and other responsibilities. Siblings of children with RSV also felt the strain, with 42% of parents saying they struggled to care for their other children when one had RSV and 42% saying that their other children were distressed watching their sibling struggle with RSV.

Even after RSV subsides, respiratory risks remain for many young patients. RSV is the leading cause of bronchiolitis and pneumonia among infants, and it increases patients’ long-term risks of developing asthma, according to the report. The surveyed parents indicated that 28% of the children developed asthma, 28% developed bronchitis, 19% developed pneumonia, 19% developed respiratory tract infections, and 8% developed other related conditions.

“Parents and the public need more evidence-based information about RSV,” Staebler said in the report. “The health care and public health communities must rally to disseminate information related to RSV prevention and early diagnosis so that the public knows just as much about RSV as they do influenza.”

REFERENCE

The Indirect Impact of RSV: RSV Parent & Provider Survey Results. Alliance for Patient Access and National Coalition for Infant Health. January 11, 2023. Accessed January 17, 2023. https://admin.allianceforpatientaccess.org/wp-content/uploads/2023/01/AfPA-and-NCfIH_The-Indirect-Impact-of-RSV_Survey-Report_Jan-2023.pdf