The main objective of this study was to find gaps between patients’ and physicians’ perceptions and to understand factors affecting treatment satisfaction in patients with SSc. Among the main findings, the symptom most patients found troublesome was RP, and patients felt that RP was less responsive to treatment than physicians thought. The major gap between patient and physician perceptions of problematic symptoms in SSc was for malaise. In addition, there were differences between patient and physician perceptions of treatment responsiveness for reflux esophagitis, dysphagia, diarrhea, constipation, and having pain. In addition to perceived treatment responsiveness, some patient background factors influenced treatment dissatisfaction.

The problematic symptoms revealed herein are similar to previous reports from other countries. RP and malaise were the patients’ most commonly reported symptoms, which is consistent with an earlier report [11]. Although hand dysfunction [14] was not considered in this study, symptoms such as skin tightening, puffy fingers, and joint movement difficulty affecting hand function were prevalent. Indeed, it has been shown that musculoskeletal involvement of the hands is a significant source of morbidity, impacting the quality of life in patients with SSc [15].

There was a noticeable difference in how patients and physicians viewed malaise as a problematic symptom. Because malaise can result from various conditions [16,17,18] when patients complain of feeling “tired”, physicians may attribute this to underlying complications, such as anemia and malnutrition, or may not give this symptom importance in the context of SSc. It is important for physicians to understand that malaise is a problematic symptom for patients and to consider that pulmonary, gastrointestinal, or other symptoms may be the cause.

This study also revealed a large gap between physicians and patients regarding the perception of treatment responsiveness. In particular, for symptoms such as reflux esophagitis, diarrhea, and pain, treatment satisfaction was particularly low in patients with poor improvement in symptoms. Gaps in treatment responsiveness perceptions may arise because treatment efficacy is often inadequate, even when patients are treated using current guidelines [7, 9, 19, 20]. Several problems have emerged with these guidelines [21]. First, the items described in the guidelines did not align with patients' expressed needs. In our study, many patients indicated that malaise was a significant problem, yet most guidelines focus on organ-specific issues and fail to address the patient’s subjective symptoms. Second, prioritizing the results of randomized controlled trials (RCTs) in guideline development can create a disconnect between evidence-based recommendations and real-world clinical practice. For example, in an RCT of iloprost for Raynaud’s phenomenon, side effects like headache and nausea occurred in 40% of patients [22]. These side effects may lead to reduced patient satisfaction with treatment, despite the positive efficacy data in clinical trials. Third, the drug dosages recommended in the guidelines do not always align with the unique needs of patients with SSc. For example, proton pump inhibitors are commonly prescribed for gastroesophageal reflux disease, but there is no established dosage specific to patients with SSc. These discrepancies between guideline recommendations and the actual patients’ experiences could contribute to the awareness gap between physicians and patients.

There are few drugs approved specifically for treating complications arising with SSc; rather, drugs approved for individual symptoms are employed, possibly with dosages and usages that are not necessarily suitable for SSc. Future research should consider dosages and usage instructions for medications targeting various complications in patients with SSc, such as RP and gastrointestinal symptoms. It may also be important to review appropriate treatment goals and methods from the patient’s perspective.

The study also identified factors that influenced treatment satisfaction. Patients who have had SSc for less than 1 year had less satisfaction with their treatment. This may be because they were pessimistic about recovery not being as great as they had expected through treatment or because of a sense of hopelessness or shock around their condition, which has no specific cure. In addition, younger patients with RP, malaise, and skin ulcers were less satisfied with treatment, possibly because these symptoms interfere with work and family life, as reported previously [23].

Some reports indicate systemic complications such as respiratory, circulatory, and gastrointestinal systems develop early in SSc [24, 25]. It has also been reported that younger patients at disease onset are more likely to have diffuse forms of the disease [26]. The higher frequency of complications at onset and the impact on lifestyle may have contributed to lower treatment satisfaction in younger patients. Physicians conducting early and thorough examinations of these patients could possibly improve patient satisfaction with treatment. This implies that patient management impacts satisfaction regardless of disease severity. Treatment satisfaction was lower for patients who wished they had sought medical attention earlier. Patients with SSc often delay seeking medical help, which may result in treatment being less effective. Early and accurate diagnosis of SSc is vital not only for improving prognosis but also for patient satisfaction.

This study had some limitations. Initially, we estimated the participation of 200 physicians; however, since we did not conduct a formal case design for this study, the final sample included only 129 physicians. However, we consider that the distribution of physicians who responded to the questionnaire, which covered all regions of Japan, sufficiently addresses concerns regarding representativeness. Patients or their representatives responded about their individual cases, whereas physicians may have responded thinking of the patient population as a whole, resulting in differences in perspectives. That is, physicians who responded to the survey were unlikely to answer with a specific patient in mind. Additionally, when a patient’s representative completed the questionnaire, they may not have correctly reflected the patient’s perspective. Because of the nature of the survey, the patient and physician population were highly interested in disease management and may not represent all patients and physicians in real-world settings. Recall bias may be present, and patients may have responded to strongly memorable items based on past experiences and information received from others. However, we believe this bias is minimal, as there have not been any significant issues related to the pathology or treatment of SSc that have garnered widespread media attention in recent years. The results may also have been impacted by the fact that treatment interventions were already in place. Additionally, there may have been "more debilitating" symptoms than the researchers anticipated. Patients may not have understood the medical terminology correctly when responding, and the terminology and style of the questions may have influenced their answers. It is not clear whether there are racial differences in the symptoms of SSc. Still, it is possible that the features of Japanese patients or peculiarities of Japanese medical systems might have influenced the result.