台灣不同地區漢生病病患日常生活能力與生活品質探討

Activity of Daily Living and Life Quality of Patients With Hansen’s Disease in Taiwan

背景：台灣漢生病的發生率雖己達到世界衛生組織所訂的標準，但在疾病的污名下患者日常生活能力與生活品質一直未受到應有的重視。
目的：探討台灣地區分別居住在機構、村落式與社區的漢生病患者年齡、性別、婚姻、教育、健康狀況等基本屬性及日常生活能力、功能性日常生活能力與其生活品質現況。
方法：採橫斷式研究，以結構性問卷訪查台灣分別居住在療養機構大樓、療養區村落與機構外社區的漢生病患者1084名，問卷包括基本屬性調查表、日常生活能力量表（BADL）、工具性日常生活能力量表(IADL)及生活品質量表。研究前經行政院衛生署北區聯盟人體試驗委員會審查通過並獲得患者簽署研究同意書後，進行研究相關資料收集。
結果：共有497位個案完整參與本研究，平均年齡為71.93（± 12.8），其中以機構內個案住民最高76.97（± 7.41）、男性人數約為女性的3倍、平均慢性病罹病數為2.05（± 1.33），以機構內個案住民2.70（± 1.50）最高。在日常生活能力方面，社區式個案的BADL與IADL能力均最好，而機構式個案能力最差，而機構式個案在BADL中個案在個人衛生、洗澡走動與上下樓梯的執行能力較低。IADL則是在烹煮、購物、洗衣與搭車等能力較差。日常生活能力均隨年齡與疾病數增加而降低（p < .001）。患者的生活品質在中等程度，以心理層面得分較差，不同地區以村落式個案的生活品質最好，社區式個案最差。
結論：漢生病病患已高齡化，患者ADL、IADL失能狀況、生活照護需求與目前居家老人相近。建議漢生病患應加強漢生病病患肢體功能復健作業與自我照顧能力監測，機構與村落式個案由於有照護上責任可增聘護理佐理人員協助個案生活照護，但社區式個案照護有待於醫療政策後續探討。如何針對漢生病病患失能部份與生活品質得分偏低項目進行改善作業，是提高漢生病患者生活品質最重要的契機。

Background: Hansen’s Disease incidence in Taiwan has declined to the goal set by the World Health Organization. However, this population does not receive adequate attention due to the stigma attached to the disease.
Purpose: The purpose of this study was to investigate the demographic characteristics, activities of daily living, and quality of life of patients with Hansen’s Disease in Taiwan.
Methods: A cross-sectional design was used. A structured questionnaire that incorporated a personal data survey form, basic activity of daily living (BADL) form, instrument ability of daily activity of living (IADL) form and quality of life (QOL) survey was used to collect data. Patients with Hansen’s Disease in Taiwan who lived in the institution, rural villages, and communities were invited to participate.
Results: Four hundred and ninety-seven participants with an average age of 71.93 (± 12.8) years participated in this study. Institutionalized participants (76.97 ± 7.41) were older than those in the other two groups. Participants were found to have in general more than one chronic disease (2.05 ± 1.33), with more chronic diseases found amongst institutionalized subjects (2.70 ± 1.23). Activities of daily living scores were generally higher for urban community dwellers than those who were institutionalized. Relatively low BADL scores for personal hygiene, bathing, walking and climbing stairs were noted, as were poor IADL scores for cooking, shopping, washing clothes and riding public transportation. Results found that activities of daily living declined with participant age (p < .001). The QOL score was mid-range, while the mental dimension of QOL was poorer than the physical dimension. Higher QOLs were observed in participants who lived in villages, while poorer QOLs were observed in participants who lived in communities.
Conclusions: The results of this study indicated activities of daily living scores declined among Hansen’s Disease patients with age. In order to promote quality of life among patients with Hansen’s Disease, several suggestions for health policy with regard to Hansen’s Disease patients are raised in this paper, including helping maintain daily living activity functions in Hansen’s Disease patients, hiring more assistants and nurses to help Hansen’s Disease patients maintain daily living activities and personal hygiene, and enhancing living environment quality and medical service appropriateness.