Self-Reported Anxiety, Depression and Coping in Parents of Children with Phenylketonuria

Limited published research has evaluated mental health in parents of children with phenylketonuria (PKU) and their coping strategies. We aimed to assess anxiety, depression and coping in parents of Tunisian children treated for PKU. We conducted a cross-sectional study in the reference center for the management of inherited metabolic diseases in Tunisia. We used the Hospital Anxiety and Depression (HAD) scale and the Brief-COPE. Dependent variables were anxiety, depression, HAD Depression (HADD) and Anxiety (HADA) scores, and coping scores. Linear regression and logistic binary regression were used for multivariate analysis. Sixty-five parents from 42 families participated. 62% and 57% of them had anxiety and depression, respectively. Parental female gender (p = 0.049), rural origin (p = 0.005) and agitation in children with PKU (p = 0.031) were associated with anxiety. Parental age under 35 years (p = 0.043), agitation in children with PKU (p = 0.012) and behavioral disengagement (p = 0.003) were associated with higher HADA scores. Parents used problem focused (5.64 ± 1.34) more often than emotion focused coping (4.55 ± 0.90). Female gender was associated with emotion-focused coping (p = 0.042) and religion (p = 0.018). Motor disability in children with PKU was associated with humor (p = 0.047) and negatively associated with religion (p = 0.037). Psychological follow-up was associated with venting (p = 0.039). A low education level was negatively associated with self-blame (p = 0.024). Our study provided preliminary data which could be used to develop a targeted psychological support strategy for parents at risk for anxiety and depression not only in Tunisia but also in comparable populations where newborn screening for PKU is not available.