Abstract
Objective: This study aims to describe the demographic profile in terms of age, marital status, annual family income, and educational attainment; to describe the physical, psychological, and social manifestations; to determine and describe coping mechanisms; to determine the goals, aspirations, and needs; and to determine the interaction and impact of the lived experiences on the quality of life of X-linked dystonia-parkinsonism (XDP) patients.Methods: This qualitative-phenomenological study was conducted in the island of Panay. Purposive sampling was utilized. The researchers utilized in-depth interviews, observation, and triangulation as part of the data collection methods. The data were transcribed verbatim, kept for content analysis, and coded in their appropriate cell categories after themes were identified.Results: Ten male patients who were residents of Panay and aged 30-65 years old participated in this study. Disease manifestations included limb dystonia, blepharospasm, truncal torsion, oromandibular symptoms, torticollis, and dysphonia, contributing to limitations in performing activities of daily living. Denial was the most common initial reaction after being diagnosed with XDP. Social manifestations were greatly affected by family and community. Money and medications were the primary needs identified by the patients with hopes of a better future for their families. There was an overall deterioration in the quality of life of the patients.Conclusions: XDP greatly affected the physical, psychological, and social aspects of the patients. Coping with the disease and its effects has been thought to play an important role in the perception of one’s quality of life.
Highlights
X-linked dystonia-parkinsonism (XDP), locally known as “lubag,” is a monogenic disease with a high prevalence rate among adult men of Filipino descent, especially those with ancestries from the island ofPanay
This study aimed to describe the biopsychosocial aspect of patients with XDP and its implications on quality of life (QoL)
This study concludes that QoL is a fluid state that can encompass both positive and negative aspects of life at the same time
Summary
X-linked dystonia-parkinsonism (XDP), locally known as “lubag,” is a monogenic disease with a high prevalence rate among adult men of Filipino descent, especially those with ancestries from the island of. It is a movement disorder characterized by sustained or spasmodic, involuntary, patterned, and repetitive muscle contractions, which result in physical deformities that are disabling and permanent [1]. In XDP, the physical manifestations influence the patient’s overall health, including the emotional, psychological, social, and spiritual aspects [2]. The accompanying social stigma attributed to the varying mild to severely grotesque physical deformities leads to interpersonal impairments. This disease has no known cure; definite symptomatic relief could only be achieved through costly measures. The disease will predictably continue to surface among male, and rarely female, members of these families for generations [3,4,5]
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