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Background <p>Connective tissue diseases (CTDs) and rheumatoid arthritis (RA) share the pulmonary complication of interstitial lung disease (ILD). However, real-world data on patient perspectives and experience regarding screening and evaluations for ILD following CTD/RA diagnosis are limited. We conducted an international, cross-sectional online survey of patients self-reporting as having confirmed CTDs and RA to understand their experience of lung manifestations and ILD screening and/or evaluations.</p> Methods <p>Respondents aged ≥18 years with self-reported CTDs/RA with and without ILD were engaged across Africa and Turkey, Europe, Japan and the Americas.</p> Results <p>Of 2,225 respondents, 54% were from Europe and 82% were female. Mean ± standard deviation (SD) age was 55 ± 11.6 years. Mean (SD) time from first symptoms to diagnosis with CTD/RA was 14.78 ± 11.37 years. On average, respondents experienced a delay of about 2 years before they were diagnosed with CTD/RA after experiencing their first symptoms. Mean (SD) time from CTD/RA diagnosis to diagnosis with lung conditions was 9.61 ± 10.09 years. Lung screening/evaluations were reported to have been done by 70% of all respondents, mostly as a general or routine status check (39%). Chest high-resolution computed tomography (HRCT) and pulmonary function tests (PFTs) were the most recalled tests to evaluate the lungs for ILD (both 50%), especially among respondents with systemic sclerosis (73% and 87%, respectively). Among respondents who recalled lung evaluation by chest HRCT scan or PFTs, tests were carried out every 1–2 years. Most survey respondents (87%) rated lung screening/evaluations as important.</p> Conclusions <p>The survey demonstrated mixed experiences of evaluations for lung manifestations and ILD among patients with CTDs/RA, attributable to differences in the risk of developing ILD and limited clinical guidance for evaluating for ILD in CTDs/RA. Despite their mixed experiences, most respondents showed a positive attitude towards lung evaluations, which could be leveraged to ensure regular, proactive screening and evaluation for ILD to improve patient outcomes. Overall, findings from this survey highlight opportunities to improve physician awareness and standardisation of practice for enhanced patient care.</p>

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Patient reports of evaluations for interstitial lung disease in patients with connective tissue diseases and rheumatoid arthritis: an international survey

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月11日

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  • Oliver Distler,
  • Katy Antonopoulou,
  • Ilaria Galetti,
  • Mary J. Wheatley,
  • Rohit Aggarwal,
  • Yannick Allanore,
  • Paul Emery,
  • Yuko Kaneko,
  • Michael Kreuter,
  • Flora Bery-Janusko,
  • Lizette Moros,
  • Anna-Maria Hoffmann-Vold

摘要

Background

Connective tissue diseases (CTDs) and rheumatoid arthritis (RA) share the pulmonary complication of interstitial lung disease (ILD). However, real-world data on patient perspectives and experience regarding screening and evaluations for ILD following CTD/RA diagnosis are limited. We conducted an international, cross-sectional online survey of patients self-reporting as having confirmed CTDs and RA to understand their experience of lung manifestations and ILD screening and/or evaluations.

Methods

Respondents aged ≥18 years with self-reported CTDs/RA with and without ILD were engaged across Africa and Turkey, Europe, Japan and the Americas.

Results

Of 2,225 respondents, 54% were from Europe and 82% were female. Mean ± standard deviation (SD) age was 55 ± 11.6 years. Mean (SD) time from first symptoms to diagnosis with CTD/RA was 14.78 ± 11.37 years. On average, respondents experienced a delay of about 2 years before they were diagnosed with CTD/RA after experiencing their first symptoms. Mean (SD) time from CTD/RA diagnosis to diagnosis with lung conditions was 9.61 ± 10.09 years. Lung screening/evaluations were reported to have been done by 70% of all respondents, mostly as a general or routine status check (39%). Chest high-resolution computed tomography (HRCT) and pulmonary function tests (PFTs) were the most recalled tests to evaluate the lungs for ILD (both 50%), especially among respondents with systemic sclerosis (73% and 87%, respectively). Among respondents who recalled lung evaluation by chest HRCT scan or PFTs, tests were carried out every 1–2 years. Most survey respondents (87%) rated lung screening/evaluations as important.

Conclusions

The survey demonstrated mixed experiences of evaluations for lung manifestations and ILD among patients with CTDs/RA, attributable to differences in the risk of developing ILD and limited clinical guidance for evaluating for ILD in CTDs/RA. Despite their mixed experiences, most respondents showed a positive attitude towards lung evaluations, which could be leveraged to ensure regular, proactive screening and evaluation for ILD to improve patient outcomes. Overall, findings from this survey highlight opportunities to improve physician awareness and standardisation of practice for enhanced patient care.