Congenital cytomegalovirus: Infant developmental trajectories and parent experiences

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PROJECT SUMMARY Infants born with congenital cytomegalovirus (cCMV) are at heightened risk long-term sequelae such as intellectual disability, sensorineural hearing loss and cerebral palsy. Most prior work has examined development in infants with cCMV using disease severity at birth to predict broadly defined long-term outcomes (e.g. “normal” vs. “abnormal” development) largely ignoring environmental or psychosocial influences that may shape long-term outcomes. Maternal stress and poorer coping skills, in general, are two such influences that have been associated with poorer developmental outcomes in at-risk infants. Examining developmental trajectories in infants with cCMV may allow for a more nuanced appreciation of the emergence or lessening of developmental delays, along with correlating maternal experiences. A better understanding of cCMV infant development, mothers’ stressors, experiences and perceived needs may yield proximal targets for intervention, as in other conditions, to improve outcomes of infants with cCMV. Examining cCMV infant developmental trajectories, their relationship with maternal stress, well-being and parenting experiences are critical to creating disease-specific anticipatory guidance, interventions and support systems that may improve infant outcomes. Therefore we will recruit and retain a birth cohort of 100 mother-infant dyads, and measure infant development longitudinally across the first 12 months of infancy to address the following aims: Aim 1) To identify distinct trajectories of development in infants with cCMV, and to determine whether trajectories are associated with baseline characteristics of the infant, and mother; Aim 2) To determine whether developmental trajectory membership is associated with maternal stress and well-being measured by self-report instruments; and Aim 3) To examine mothers’ experiences of parenting an infant with cCMV through sequential, repeated unstructured qualitative interviews from birth to 12 months of age. Study PI, Dr. Pesch, is a developmental and behavioral pediatrician whose recent research and clinical work has centered around the diagnosis and treatment of cCMV. With the support of an interdisciplinary tem of mentors and an advisor, Dr. Pesch will gain experiences in the measurement of infant development using a virtual platform, the recruitment and retention of a rare disease cohort, insider research methods to minimize bias and family resilience theory. This K23 supported research training will increase the understanding of the developmental trajectories of infants with cCMV, and the relationships of those trajectories with maternal stress and well-being. These findings will lead to a future maternal empowerment intervention for mothers of infants with cCMV to improve infant developmental outcomes.