# Understanding the burden of congenital cytomegalovirus (cCMV) infection: concept elicitation interviews with caregivers of pediatric cCMV patients and development of a conceptual disease model

## TL;DR

This study explores how congenital cytomegalovirus (cCMV) affects children and their caregivers, highlighting emotional, physical, and social impacts.

## Contribution

The study introduces a conceptual disease model based on caregiver experiences to improve clinical care and outcome assessments for cCMV.

## Key findings

- All caregivers reported increased healthcare needs for their child with cCMV.
- Emotional functioning was the greatest impact for about half of the caregivers.
- Caregivers reported patient impacts across emotional, physical, and social domains.

## Abstract

Congenital cytomegalovirus (cCMV) is the most common congenital infection worldwide. cCMV can result in long-term impairments such as hearing loss and developmental delay. The study objective was to understand the caregiver experience of cCMV and caregiver-reported perceptions of the experience for cCMV patients.

This non-interventional, cross-sectional study interviewed 25 caregivers of patients (aged 4 months to 17 years) with confirmed cCMV in the United States. Semi-structured qualitative interviewing methods were used to elicit descriptions of cCMV symptoms and their impact on the patient as perceived by the caregiver. Separate questions assessed the caregiver burden of a patient with cCMV. Transcripts were analyzed using an iterative coding process to identify key concepts.

All caregivers reported increased healthcare needs for their child with cCMV. Other caregiver-reported patient impacts spanned multiple domains including emotional, physical and social functioning, education and communication. For example, a child with cCMV-related communication/hearing difficulties experiencing sadness or social isolation, or with cCMV-related seizures resulting in worry or apprehension. The caregiver impacts of caring for a child with cCMV also covered multiple domains including emotional, role and social functioning, work, sleep, and family planning. Emotional functioning was considered the greatest impact by approximately half of caregivers.

These results advance understanding of experiences related to cCMV for caregivers and caregiver-reported perceptions of the patient experience. This may help healthcare professionals improve routine clinical practice for families affected by cCMV. The results and conceptual model may also support the development of a disease-specific clinical outcome assessment tool.

The online version contains supplementary material available at 10.1007/s11136-025-04142-3.

Cytomegalovirus is a common virus, usually mild in healthy adults, that can be passed to an unborn baby during pregnancy (congenital cytomegalovirus). Some babies born with congenital cytomegalovirus have long-term health problems, such as hearing loss or learning disabilities. This study interviewed 25 parents caring for children with congenital cytomegalovirus in the United States to explore the impact of the disease on the lives of patients and caregivers.

Impacts of congenital cytomegalovirus on the children, as reported by the caregivers, included emotional (e.g., anxiety, fear, worry), physical (e.g., needing devices to assist hearing) or social effects (e.g., social withdrawal), or difficulties with education or communication.

All caregivers reported emotional impacts such as feelings of shock, anxiety, and fear, sometimes lasting a long time as parents worried about potential future impacts of congenital cytomegalovirus on their child. These results help to understand the impacts of congenital cytomegalovirus on the lives of patients and their families.

The online version contains supplementary material available at 10.1007/s11136-025-04142-3.