Alcachupas Aljeirou, Bellosillo Krisverlyn, Catolico Wynlee Rhm, Davis Mark Cullen, Diaz Alyssa, Doyongan Yvette Karla, Eduarte Reczy, Gersava Emerald, Intrepido Mary Bernadette, Laluma Maugri Grace Kristi, Lavalle Candra Carmelli, Millan Jeffrey Jr
College of Medicine, West Visayas State University, Iloilo City, PHL.
Cureus. 2022 Jan 28;14(1):e21699. doi: 10.7759/cureus.21699. eCollection 2022 Jan.
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.
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.
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.
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.
本研究旨在描述X连锁肌张力障碍-帕金森综合征（XDP）患者在年龄、婚姻状况、家庭年收入和教育程度方面的人口统计学特征；描述其身体、心理和社会表现；确定并描述应对机制；确定目标、愿望和需求；以及确定生活经历对XDP患者生活质量的相互作用和影响。
本定性现象学研究在班乃岛进行。采用目的抽样法。研究人员采用深度访谈、观察和三角验证作为数据收集方法的一部分。数据逐字转录，留作内容分析，并在确定主题后按适当的单元格类别进行编码。
10名居住在班乃岛、年龄在30至65岁之间的男性患者参与了本研究。疾病表现包括肢体肌张力障碍、眼睑痉挛、躯干扭转、口下颌症状、斜颈和发音障碍，导致日常生活活动受限。否认是被诊断为XDP后最常见的初始反应。社会表现受到家庭和社区的极大影响。金钱和药物是患者确定的主要需求，他们希望家人有更美好的未来。患者的生活质量总体下降。
XDP极大地影响了患者的身体、心理和社会方面。应对疾病及其影响被认为在个人生活质量认知中起着重要作用。
