Psychosocial Functioning of Youth with Hereditary Polyposis Syndromes and Their Caregivers

To evaluate psychosocial functioning among youth with hereditary polyposis syndromes (HPS) and their caregivers.

Data on health-related quality of life (HRQOL), illness uncertainty (Child Illness Uncertainty Scale/Parent Illness Uncertainty Scale), caregiver psychological distress, and caregiver-perceived blame/fault were collected as part of standard care visits to a multidisciplinary polyposis clinic.

Psychosocial data were obtained from 33 youth ages 8-18 and 63 caregivers. About 15% of youth and 13% of caregivers endorsed elevated illness uncertainty. HRQOL was poorest in emotional and school functioning. Mean (±SD) caregiver distress scores were 1.03 ± 1.59 and mean blame/fault scores were 2.56 ± 2.53, with 21% of caregivers feeling at fault for their child's HPS. Significant correlations were found between child- and caregiver-reported illness uncertainty (r = 0.52, P < .01) and caregiver perceived fault was significantly correlated with caregiver distress (r = 0.26, P = .04). Caregivers with a shared diagnosis endorsed feeling at fault for their child's HPS diagnosis and endorsed significantly greater distress. Caregivers of youth with minority status endorsed significantly greater distress (H(4) = 10.54, P = .03) and caregiver perceived fault was higher for male youth.

Findings suggest that youth with HPS are at risk of poor HRQOL and elevated illness uncertainty, and caregivers similarly show elevated risk for psychological distress, perceived fault for the youth's HPS diagnosis, and elevated illness uncertainty. Some socioeconomic factors also have significant implications for caregiver's overall functioning. These findings highlight the need for psychosocial functioning to be a primary target and consideration in HPS care.