Impact of X-linked dystonia-parkinsonism on caregiver strain, anxiety and depression

Background: X-linked dystonia-parkinsonism (XDP) is a progressive movement disorder that predominantly affects men from the Panay Islands in the Philippines. Although patient outcomes have been well described, the effect of XDP on caregivers has received far less attention. Objectives: To evaluate caregiver strain, anxiety and depression among primary caregivers of patients with XDP and compare outcomes between caregivers of patients who had and had not undergone deep brain stimulation (DBS). Methods: We conducted a single-centre, cross-sectional study involving 52 dyads of patients with XDP and their caregivers interviewed via videocall. Socio-demographic and clinical information was collected, and caregiver strain and psychological symptoms were assessed using validated online questionnaires. Results: Caregivers (mean age, 43.3 years; 96.2% female) provided an average of 13 h of care daily, most often as spouses. Nearly one-quarter were at risk for caregiver strain, and 21.2% experienced severe strain. Anxiety and depressive symptoms were reported by 53.9% and 40.4% of caregivers, respectively. Older caregiver age was associated with lower strain. Higher strain was associated with frequent unplanned hospitalisations, greater disease severity across multiple XDP domains by the Movement Disorder Society of the Philippines, patient anxiety and depression and the presence of a secondary caregiver. Caregivers of patients who underwent DBS treatment reported fewer depressive symptoms than those caring for patients who had not undergone DBS. Conclusion: Caring for individuals with XDP is associated with substantial physical and psychological burden. These findings point to the need for targeted psychosocial support, caregiver education and better coordination of caregiving roles to reduce strain and improve both caregiver well-being and patient care.