Purpose Treat-to-target (T2T) is considered the emerging concept to significantly improve systemic lupus erythematosus (SLE) care and the patients’ outcomes. However and although the success of T2T is largely determined by the involvement of patients, their perspective on T2T has so far not been assessed. It was our aim to investigate patients’ attitude towards T2T.
Methods A new-designed questionnaire of 13 questions on T2T, its acceptance, the need and willingness to participate in a T2T trial and possible obstacles for T2T was distributed among members of the patient organizations of the Netherlands (NL), Austria (AU), Germany (GE) and Bulgaria (BG) via newsletter (GE, AU, BG), personal invitation (NL) and a closed Facebook group (BG).
Results A total of 863 patients (n=316 NL, n=271 GE, n=232 BG, n=44 AU), 93.3% female, 52.2% aged 41–60 years with self-declared diagnosis of SLE completed the questionnaire. 48.4% declared being currently in remission, 13% did not know if they were in remission.
Regarding the satisfaction with the current health status, 56.2% were somewhat to all the way satisfied, 29.3% were not at all or hardly satisfied. 65.5% were satisfied with their current therapeutic treatment, while 14.8% where not at all or hardly satisfied with their treatment. Longer disease duration and Dutch origin were associated with higher satisfaction of both health status (disease duration: estimate 0.15, 95%CI 0.09–0.22, p<0.001; Dutch origin: estimate 0.42, 95%CI 0.27–0.61, p<0.001) and therapeutic treatment (disease duration: estimate 0.11, 95%CI 0.05–0.17, p<0.001; Dutch origin: estimate 0.58, 95%CI 0.40–0.75, p<0.001).
As most important treatment goal, normalization of quality of life was chosen most frequently (37.4%) followed by prevention of organ damage (24.6%) and the absence of disease activity (22.6%).
Regarding shared decision making, the majority reported to be somewhat to all the way involved in treatment decisions (62.1%) while 20,7% where hardly or not at all involved. Dutch patients and patients with longer disease duration reported a stronger involvement in treatment decisions (disease duration: estimate 0.19, 95%CI 0.12–0.26, p<0.001; Dutch origin estimate 0.59, 95%CI 0.39–0.78, p<0.001).
As most difficult decisions in T2T and shared decision making, respondents named the start of new SLE medication (37.9%) and to change medication while feeling good (39.4%). An increase in the dose of glucocorticoids to reach remission was difficult for 22.7%. The perceived advantages and disadvantages of T2T are depicted in figure 1.
Conclusions A substantial number of patients was not satisfied with their health status and therapeutic treatment, whereby Dutch patients and patients with longer disease duration showed higher satisfaction. Reasons and potential biases for this country specific discrepancy remain to be elucidated. Advantages of T2T did overweigh possible disadvantages of T2T with the possibility of more doctors’ visits and the prescription of a new drug as biggest disadvantage. Quality of life named as most important treatment goal emphasizes its importance as outcome parameter.
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