Objective: The study will determine the patient’s quality of life and their subjective psychological well-being by using the Parkinson Disease Questionnaire (PDQ) – 39 and the World Health Organization (WHO) – 5 Index of Well Being Scale.

Background: X-linked Dystonia of Parkinsonism (XDP) or DYT3 Dystonia is a movement disorder unique to adult Filipino men which usually starts a focal dystonia which eventually generalizes and later would develop parkinsonian features (Lee, LV. et al., 2004).  Gastrointestinal dysfunction leading to malnutrition and aspiration pneumonia is the usual cause of the demise (Rosales, RL, 2010); however, the growing number of suicides where important personal and social factors such depression, anxiety, stigmatization and interpersonal relationship should be considered.

Methods: Fifty clinically confirmed XDP patients from the Movement Disorder Registry of Jose R. Reyes Memorial Medical Center and the XDP Registry in Health Centrum Dystonia Clinic in Roxas City, Capiz who consulted from October to November 2016 were included. The PDQ 39 scale and WHO-5 Index of Well Being questionnaires were administered and the quality of life profile and emotional wellbeing of the patients were determined. The PDQ 39 Score, as well as its domains, were correlated with the WHO-5 Index of Well Being score to determine if there is a relationship between the quality of life of the patients and their psychological well-being.

Results: Six out of the eight domains of the PDQ 39 showed median scores while both the social support and cognition domains showed below the median scores (3.7 ± 3.4 and 4.9 ± 3.7 respectively) [Table1]. The eight domains of the PDQ 39 and WHO-5 Index of Well Being Scale scores were subsequently analyzed using the Pearson’s Product Moment Correlation but showed negligible correlation which is also statistically not significant [Table2].

Conclusions: The impairment of quality of life was observed in the physical, social and emotional aspects of the disease. This study suggests that the severity of impairment of the quality of life does not equate to a poor emotional well-being of the individual. There may be other factors of the disease which may significantly affect the emotional well-being of the patient. We are recommending further studies on identifying other factors which may have an impact on the emotional well-being of XDP patients. 

References: Lee, LV. et al. Sex Linked Recessive Dystonia Parkinsonism of Panay, Philippines (XDP). Journal of Clinical Pathology: Molecular Pathology. 2001; 54: 362-368.

Rosales, Raymond L. X-Linked Dystonia Parkinsonism: Clinical Phenotype, Genotype and Therapeutics. Journal of Movement Disorders. 2010; 3: 32-38.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/psychosocial-impact-of-x-linked-dystonia-parkinsonism-xdp-of-panay/