Patient and Physician Perspectives on Systemic Sclerosis–Associated Interstitial Lung Disease

Abstract

Systemic sclerosis–associated interstitial lung disease is challenging to diagnose and treat. Patients and physicians can perceive the disease differently and have different views on its management. Communication issues between them can lead to suboptimal disease management. Despite a clear need for improvement in the speed and accuracy of the diagnostic workup, the heterogeneity of clinical symptoms renders the process long and challenging. When considering treatment options, physicians may be more focused on the evidence supporting a particular treatment or on a patient’s pulmonary function test results, as opposed to the realities of the patient’s difficulties with symptoms or the psychosocial effects of systemic sclerosis–associated interstitial lung disease. Disease management plans should be determined by the patient’s own preferences and goals as well as the objective clinical situation. Health care providers must consider their patients as partners on a journey in which treatment decisions are reached jointly. This review will focus on the perspectives of physicians and patients in relation to the diagnosis and management of systemic sclerosis–associated interstitial lung disease. Similarities and differences in these perspectives will be identified, and strategies for achieving optimal disease management will be proposed.

Information preferences about treatment options in diffuse cutaneous systemic sclerosis: A Delphi consensus study

“…These findings are in line with patient perceptions about essential outcomes of treatment in SSc and other rheumatic diseases, which showed that quality of life and daily functioning were highly prioritized. 16,17 There were three rounds and a live online meeting needed to reach agreement on the items, which reflects the different views of individual patients on this subject. Furthermore, no agreement was reached on items about infertility and disease relapse, which are relatively common adverse events for CYC and SCT with considerable impact on quality of life.…”

“…These findings are in line with patient perceptions about essential outcomes of treatment in SSc and other rheumatic diseases, which showed that quality of life and daily functioning were highly prioritized. 16 , 17 …”

Educational aspects of rare and orphan lung diseases

“…Patient education is a valuable component of disease management, and may enhance shared decision making and communication, increase concordance with treatment, reduce anxiety, and help patients to feel more in control [ 37 ]. Educated patients are more likely to use healthcare services in a responsible way and obtain higher benefits from treatment [ 38 , 39 ].…”

“…However, educating patients is more challenging than educating healthcare professionals, as the patients’ own health issues, diverse backgrounds, and language can create significant barriers [ 42 ]. Furthermore, the complex aetiology and heterogeneity of some diseases make it even more difficult to provide accurate, tailored disease education to patients [ 37 , 43 ]. A personalized approach, taking into account the individual’s goals, personal preferences, cultural beliefs and lifestyle is needed [ 26 ].…”

Identifying unmet needs in SSc-ILD by semi-qualitative in-depth interviews

“…To secure implementation of these recommendations in daily clinical practice, it is important to identify remaining unmet needs in all phases of the patient journey [ 9–12 ]. These include pre-diagnostic, diagnostic and post-diagnostic phases, as experienced by healthcare providers (HCPs) and patients themselves [ 13 ]. It is well-known from other life-threatening diseases that actively involving patients in therapeutic decision-making is crucial for self-management and compliance [ 14 ].…”