[The Health-Seeking Experience of Patients With Sjögren's Syndrome].

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.

Changes in hepatitis B virus surface antibody titer and risk of hepatitis B reactivation in HBsAg-negative/HBcAb-positive patients undergoing biologic therapy for rheumatic diseases: a prospective cohort study.

BACKGROUND: Our aim was to investigate dynamic changes in hepatitis B virus (HBV) surface antibody (HBsAb) titer and the associated risk of HBV reactivation and clinical course in patients with HBV surface antigen negative/core antibody positive (HBsAg-/HBcAb+) serostatus during antirheumatic therapy with biologic agents. METHODS: In a prospective study from January 2013 to June 2017, we monitored the HBV serostatus of HBsAg-/HBcAb+ patients undergoing biologic therapy for rheumatic diseases. From HBsAb titers at baseline and subsequent time points, we calculated the person-years (PY) contributed by patients with different HBsAb levels: < 10 mIU/mL (negative); 10-100 mIU/mL (low); and > 100 mIU/mL (high). We analyzed the incidence of detectable HBV DNA and HBV reactivation in each group, and documented the clinical courses of patients. RESULTS: Among 380 participants, 83 (21.8%) had baseline HBsAb < 10 mIU/mL, 156 (41.1%) HBsAb 10-100 mIU/mL, and 141 (37.1%) HBsAb > 100 mIU/mL. Total PY at study end were 169.3 PY from the HBsAb-negative group, 362.7 PY from the low-titer group, and 285.8 PY from the high-titer group. Seventeen patients had detectable HBV DNA, with respective incidence rates in negative, low- and high-titer groups of 4.7/100 PY, 2.5/100 PY, and 0/100 PY. Two HBsAb-negative patients subsequently developed HBV reactivation, an incidence of 1.2/100 PY. CONCLUSIONS: The risk of HBV reactivation varied with HBsAb titer, which changed during biologic therapy. Neither HBV DNA nor reactivation were detected in patients with HBsAb > 100 mIU/mL, whereas HBV DNA without reactivation occurred periodically in patients with HBsAb 10-100 mIU/mL; HBsAb-negative serostatus was associated with a risk of HBV reactivation.

Frequency of Lost to Follow-Up and Associated Factors for Patients with Rheumatic Diseases.

OBJECTIVE: To determine the frequency of lost to follow-up (LTFU) in the setting of usual care for outpatients with rheumatic diseases including RA, SLE, AS, and Ps/PsA, to explore the associated demographic factors, and to investigate the reasons for being LTFU from the original medical care. METHODS: Patients registered between May 2011 and January 2014 at the rheumatology outpatient department of a medical center were included. Those who did not attend their scheduled appointment were defined as LTFU. Univariate and multivariate logistic regression were used to analyze the factors for being LTFU. RESULTS: A total of 781 patients were enrolled, including 406 patients with RA, 174 with SLE, 136 with AS, and 65 with Ps/PsA. The frequency of LTFU was 23.9%, 25.9%, 35.3%, and 35.4%, respectively. The frequency of LTFU was significantly different between the four rheumatic diseases (p = 0.028). In multivariate logistic regression analysis, an older age increased being LTFU in the patients with RA (OR 1.02; 95% CI 1.00-1.04; p = 0.033), but reduced being LTFU in those with Ps/PsA (OR 0.96; 95% CI 0.92-0.99; p = 0.021). Female patients with SLE and Ps/PsA were more likely to be LTFU, although this did not reach statistical significance (p = 0.056 and 0.071, respectively). The most common reason for being LTFU was moving to other district hospitals from the original medical center due to convenience for the patients with RA and SLE, and stopping medication due to minimal symptoms for the patients with AS and Ps/PsA. CONCLUSIONS: The frequency of LTFU in patients with rheumatic diseases is high. Associated demographic factors included older age in RA, female gender in SLE and Ps/PsA, and younger age in Ps/PsA, with various reasons for being LTFU. Recognizing these associated factors and reasons for being LTFU may help to improve the attendance of patients and the quality of medical care.