Caregiver's burden and quality of life in mitochondrial disease

A child's health inevitably affects the parents' psychologic health and quality of life, especially for mothers of disabled children. Caregiver burden and health-related quality of life were investigated in mothers of children with mitochondrial disease, compared with mothers of children with intractable epilepsy. Mothers of children with mitochondrial disease (n = 33) and intractable epilepsy (n = 32) were recruited. The Zarit Burden Inventory, the Medical Outcomes Short Form 36, short version of the World Health Organization Quality of Life, Beck Depression Inventory, and Beck Anxiety Inventory were administered to all participants. Except for duration of illness and number of previous hospitalizations, there was no significant difference in recorded variables between the two groups. Mothers of children with mitochondrial disease had significantly higher caregiver burden and poorer health-related quality of life, particularly related to role limitations, vitality, and mental health. They also had greater levels of depression and anxiety. After adjustment for all covariates, caregiver anxiety was the most important factor affecting overall caregiver burden. With mitochondrial disease, the possibility of maternal inheritance and scarcity of information about the disease might increase anxiety and thus eventually also the caregiver burden. Accurate information about rare diseases provided to caregivers could be helpful in reducing their anxiety.