NeuralCipher Research overview
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ContextPatients with progressive neurologic diseases (PNDs) face a prolonged and fluctuating course of illness marked by increasing disability and a range of nonmotor symptoms. However, the impacts of nonmotor symptoms and unmet care needs remain underexplored. Palliative care needs arise from the multifaceted sufferings associated with PNDs, encompassing not only physical pain but also psychological, social, and spiritual distress. Despite recommendations for early palliative care for PNDs to address these multidimensional sufferings, access to such supportive care is often restricted to advanced stages of the disease.ObjectivesThis cross-sectional study aimed to examine palliative care needs, psychological distress, health-related quality of life, and the mediating effects of psychological distress on palliative care needs and health-related quality of life among patients with PNDs.MethodsA total of 210 patients with PNDs (Parkinson's disease or multiple sclerosis) were recruited using convenience sampling from regional neurology outpatient clinics and patient support groups in Hong Kong. Participants responded to Palliative Care Outcome Scale (POS), Hospital Anxiety and Depression Scale (HADS), and EQ-5D-5L surveys.ResultsMost respondents (59.0%) walked without aid, whereas 26.2% required assistance and 14.8% were wheelchair-restricted. The most prevalent palliative care needs were physical symptoms other than pain, psychosocial support, and spiritual burden. A significant portion of participants exhibited possible anxiety (41.1%) or depression (48.6%). Hierarchical regression analysis indicated that mobility, palliative care needs, anxiety, and depression were significantly associated with the health-related quality of life. Anxiety and depression partially mediated the relationship between palliative care needs and quality of life.ConclusionGiven the chronic, fluctuating illness trajectory, early recognition and management of emerging palliative care needs, particularly psychospiritual distress, is crucial for enhancing health-related quality of life for patients with PNDs.
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