Patient preferences for the treatment of systemic sclerosis-associated interstitial lung disease: a discrete choice experiment

Abstract

Objectives Treatments for systemic sclerosis-associated interstitial lung disease (SSc-ILD) differ in attributes, i.e. mode of administration, adverse events (AEs) and efficacy. As physicians and patients may perceive treatments differently, shared decision-making can be essential for optimal treatment provision. We therefore aimed to quantify patient preferences for different treatment attributes. Methods Seven SSc-ILD attributes were identified from mixed-methods research and clinician input: mode of administration, shortness of breath, skin tightness, cough, tiredness, risk of gastrointestinal AEs (GI-AEs), and risk of serious and non-serious infections. Patients with SSc-ILD completed an online discrete choice experiment (DCE) in which they were asked to repeatedly choose between two alternatives characterized by varying severity levels of the included attributes. The data were analysed using a multinomial logit model; relative attribute importance and maximum acceptable risk measures were calculated. Results Overall, 231 patients with SSc-ILD completed the DCE. Patients preferred twice-daily oral treatments and 6–12-monthly infusions. Patients’ choices were mostly influenced by the risk of GI-AEs or infections. Improvement was more important in respiratory symptoms than in skin tightness. Concerning trade-offs, patients accepted different levels of increase in GI-AE risk: +21% if it reduced the infusions’ frequency; +15% if changing to an oral treatment; up to + 37% if it improved breathlessness; and up to + 36% if it reduced the risk of infections. Conclusions This is the first study to quantitatively elicit patients’ preferences for treatment attributes in SSc-ILD. Patients showed willingness to make trade-offs, providing a firm basis for shared decision-making in clinical practice.

Heterogeneity of determining disease severity, clinical course and outcomes in systemic sclerosis-associated interstitial lung disease: a systematic literature review

“…In summary, the large heterogeneity of definitions of SSc-ILD 'progression', 'severity' and 'outcome' emphasise the need for further studies to develop standardised, consensus definitions, in which also patients' perspective must be included. 62 The results of the present SLR may represent the basis for the development process to create a disease-specific model to define progression of SSc-ILD, anchored to a predetermined specific definition of severe SSc-ILD. Overall, this initiative will aim at a better understanding of the variability of the course of SSc-ILD, thus allowing an accurate stratification of patients with SSc-ILD, timely treatment initiation and development of treatments goals.…”

Recent advances in the management of systemic sclerosis-associated interstitial lung disease

“…In short, patients preferred twice-daily oral treatments and 6-to-12-monthly infusions, and choices were mostly influenced by the risk of GI-AEs or infections. Concerning trade-offs, patients accepted different levels of increase in GI-AE risk: +21% if it reduced the infusion frequency; +15% if changing to an oral treatment; +37% if it improved breathlessness and +36% if it reduced the risk of infections [21 ▪ ].…”

“…Rituximab was considered an treatment escalation option in cases where nintedanib, MMF or CYC were not appropriate choices or after inadequate initial treatment responses [3 ▪▪ ]. We were also very recently reminded that treatment choices should always involve the patient [21 ▪ ]. This important study quantitatively addressed patients’ preferences for treatment in 231 SSc-ILD patients.…”

Die interstitielle Lungenerkrankung bei systemischer Sklerose

“…Im klinischen Alltag treffen die meisten Experten individuelle Einzelfallentscheide unter Berücksichtigung der Evidenz und der eigenen Erfahrung [74], aber auch der Wünsche und Vorstellungen der Patienten [75]. Höhere Dosen von Glukokortikosteroiden ▶Tab.…”

“…Im klinischen Alltag treffen die meisten Experten individuelle Einzelfallentscheide unter Berücksichtigung der Evidenz und der eigenen Erfahrung 74 , aber auch der Wünsche und Vorstellungen der Patienten 75 . Höhere Dosen von Glukokortikosteroiden sollten aufgrund der Gefahr der renalen Krise nicht regelhaft eingesetzt werden und werden allgemein nicht empfohlen 56 .…”