Crawford R, Doward L, Conroy R, Saretsky T, Sinha A. Living with congenital cytomegalovirus: a conceptual model of impact for patients and caregivers. Poster presented at the 2019 Pediatric Academic Societies (PAS) Meeting; April 28, 2019. Baltimore, MD.

Background: Congenital cytomegalovirus (cCMV) is a common congenital infection. Associated sensory/neurological sequalae are a major cause of impairment, which can be permanent and life-threatening. The caregiver/patient perspective of living with cCMV disease (cCMVd) is not well understood. This study is a review of published literature and unsolicited patient-reported information (PRI) from social media to develop a conceptual model of the health-related quality of life (HRQoL) impact of cCMVd.

Design/Methods: A targeted PubMed search and a social media review of patient/caregiver PRI shared on cCMV-specific and parenting websites identified key concepts of importance to patients/caregivers on the impact of cCMVd-associated sequelae on patient/caregiver HRQoL to generate a conceptual model.

Results: Majority of published studies were clinical/epidemiological, reporting primarily on prevalence or severity of sequalae at life stages from birth to adulthood. Severe sequalae, categorized to include brain damage, neurological abnormalities, extreme microcephaly, and organ damage, spanned all life stages. The most commonly reported moderate sequala was hearing loss. Published articles provided limited data on HRQoL impacts. cCMV-positive children with long-term sensory, neurocognitive, or motor impairments (cCMV+LTI) showed poorer HRQoL (i.e. lower scores) on the Pediatric Quality of Life Inventory than cCMV-negative children with long-term impairments (cCMV-LTI): cCMV+LTI = 75.8, cCMV-LTI = 84.4, P < 0.05. Parents of cCMV+LTI children also reported greater daily life impairments and worse mental health than parents of cCMV-LTI children. The social media review included 61 posts; unique post contributors included 2 female patients (aged 24 and 36 yrs) and 60 family members (M = 2, F = 56, unk = 2). PRI data yielded insights into patient/caregiver perceptions of sequalae. While hearing loss was the most prevalent sequela reported (57.4%), it was considered manageable with minimal impact on patients’ HRQoL. Caregivers reported feelings of guilt, fear, and exhaustion. A conceptual model of HRQoL (Fig 1) was generated from PubMed and PRI data.

Conclusion(s): The combined published literature and PRI data provided valuable insight into the HRQoL impact of cCMVd on patients and caregivers. However, the review demonstrates the need for conducting further qualitative work to fully understand the humanistic burden of living with cCMVd.

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