修格蘭氏症候群病人之求醫經驗

The Health-Seeking Experience of Patients With Sjögren’s Syndrome

背景：修格蘭氏症候群（Sjögren’s syndrome）因症狀多元，病人常依據症狀求診，求醫過程跨越不同科別，常致多年後才被診斷，而造成病人長期生活上的困擾。
目的：本研究旨在探討修格蘭氏症候群病人之求醫經驗。
方法：採質性研究方法，以立意取樣方式訪談14位修格蘭氏症候群病人，資料採內容分析法進行分析。
結果：可歸納為4個主題：(1)惱人的症狀；(2)確診困難；(3)擔憂藥物副作用；及(4)面對疾病。從疾病初期全身不適之惱人症狀引發參與者到處求醫，於漫長的求醫過程中，醫師未明確告知疾病診斷，致內心相當煎熬，又因疾病因素須終生服藥，擔心藥物副作用傷身，而出現自行調藥行為，透過自己不斷摸索如何與疾病和平共存，心態從否認到釋懷，面對疾病並接受，生病歷程中領悟到要好好照顧自己，學會放下。
結論／實務應用：醫療人員倘若能提升對此疾病的認識，讓病人及早轉診到風濕免疫科，及早診斷，以減輕病人到處求醫的痛苦，讓病人能保有正常的工作和生活品質。

Background: The multiple symptoms of Sjögren's syndrome lead patients affected by this disease to seek medical advice from different medical disciplines and specialists. Diagnoses are often made many years after initial onset, resulting in mental and physical exhaustion and misunderstandings.
Purpose: This study was designed to explore the health-seeking experiences of patients with Sjögren's syndrome.
Methods: Qualitative research methods and purposive sampling were used. Fourteen patients with Sjögren's syndrome were interviewed by the first author, and the collected data were analyzed using content analysis.
Results: Four themes were revealed from the data, including: (1) distressing symptoms; (2) difficulty in diagnosis; (3) concerns about drug side effects; and (4) facing the disease. The participants initially sought medical attention when they began experiencing early onset symptoms that caused discomfort or annoyance. Their doctors' failure to provide proper diagnoses during the long health-seeking process caused a great deal of suffering to the participants. Although related medications should be taken for life, the participants reported taking lower-than-prescribed dosages out of fear of side-effects. The participants explored their process of coping with the disease, which began with denial and ended with acceptance. By learning from their health-seeking process, participants realized that they needed to take proper care of themselves, adapt to life with their disease, and control related symptoms.
Conclusions/ Implications for Practice: To facilitate the early diagnosis of Sjögren's syndrome, healthcare professionals should improve their awareness of this condition and refer patients with related symptoms to rheumatologists and immunologists. Effective early diagnosis and treatment can help these patients reduce the time and effort involved in unproductive doctor’s visits, allowing them to better continue as productive members of society and to maintain a good quality of life.