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

Hoffmann‐Vold, Anna‐Maria; Bendstrup, Elisabeth; Dimitroulas, Theodoros; Hesselstrand, Roger; Morais, António; Peltomaa, Ritva; Smith, Vanessa; Welling, Joep; Vonk, Madelon C.; Wuyts, Wim

doi:10.1093/rheumatology/keab154

Cited by 13 publications

(8 citation statements)

References 31 publications

(31 reference statements)

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“…[6] Of non-IPF F-ILD subtypes, systemic sclerosis-associated ILD (SSc-ILD) is of particular interest as it presents early in the disease course [7] and impacts both mortality and quality of life. [8,9] Despite their major impact on mortality, quality of life and resource use, in Europe the epidemiological data available for ILDs and particularly their PF forms is scarce. [10,11] Therefore, the primary aim of the PERSEIDS study was to obtain detailed information on the epidemiology of ILDs in six European countries.…”

Section: Introductionmentioning

confidence: 99%

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Epidemiology of interstitial lung diseases and their progressive-fibrosing behaviour in six European countries

et al. 2021

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The PERSEIDS study aimed to estimate incidence/prevalence of interstitial lung diseases (ILDs), fibrosing Interstitial lung diseases (F-ILDs), idiopathic pulmonary fibrosis (IPF), systemic sclerosis-associated ILD (SSc-ILD), other non-IPF F-ILDs and their progressive-fibrosing (PF) forms in six European countries, as current data are scarce.This retrospective, two-phase study used aggregate data (2014–2018). In Phase 1, incident/prevalent cases of ILDs above were identified from clinical databases through an algorithm based on codes/keywords, and incidence/prevalence was estimated. For non-IPF F–ILDs, the relative percentage of subtypes was also determined. In Phase 2, a subset of non-IPF F-ILD cases was manually reviewed to determine the percentage of PF behaviour and usual interstitial pneumonia-like (UIP-like) pattern. A weighted mean percentage of progression was calculated for each country and used to extrapolate incidence/prevalence of progressive-fibrosing ILDs (PF–ILDs).In 2018, incidence/105 person-years ranged between 9.4–83.6(ILDs), 7.7–76.2(F-ILDs), 0.4–10.3(IPF), 6.6–71.7(non-IPF F-ILDs) and 0.3–1.5(SSc-ILD); and prevalence/105 persons ranged between 33.6–247.4(ILDs), 26.7–236.8(F-ILDs), 2.8–31.0(IPF), 22.3–205.8(non-IPF F-ILDs) and 1.4–10.1(SSc-ILD). Among non-IPF F-ILDs, sarcoidosis was the most frequent subtype. PF behaviour and UIP-like pattern were present in a third of non-IPF F-ILD cases each and hypersensitivity pneumonitis showed the highest percentage of progressive behaviour. Incidence of PF-ILDs ranged between 2.1–14.5/105 person-years, and prevalence between 6.9–78.0/105 persons.To our knowledge, PERSEIDS is the first study assessing incidence, prevalence and rate of progression of ILDs across several European countries. Still below the threshold for orphan diseases, the estimates obtained were higher and more variable than reported in previous studies, but differences in study design/population must be considered.

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Section: Introductionmentioning

confidence: 99%

“…Progression of non-IPF F-ILDs has been associated with higher healthcare resource use and worst quality of life [ 6 ]. Of non-IPF F-ILD subtypes, systemic sclerosis-associated ILD (SSc-ILD) is of particular interest as it presents early in the disease course [ 7 ] and impacts both mortality and quality of life [ 8 , 9 ].…”

Section: Introductionmentioning

confidence: 99%

Epidemiology of interstitial lung diseases and their progressive-fibrosing behaviour in six European countries

et al. 2021

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“…In one outpatient study, a team of respiratory care experts, nurses, respiratory therapists, physiotherapists and a dietitian helped to reduce hospitalisations by adopting an early integrated palliative approach, with a focus on early symptom management and advance care planning [69]. Previous studies investigating the unmet needs and preferences of patients and healthcare professionals have highlighted the importance of shared care and multidisciplinary collaboration in management [70][71][72]. A multidisciplinary approach is also considered key for lung transplantation, as a discussion between clinicians and the transplant team can help to improve outcomes before the surgery takes place [73].…”

Section: Supportive Care and Lung Transplantationmentioning

confidence: 99%

Multidisciplinary teams in the clinical care of fibrotic interstitial lung disease: current perspectives

et al. 2022

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Multidisciplinary team (MDT) meetings, involving the integrated collaboration of healthcare professionals, are increasingly used in clinical practice to inform the diagnosis and treatment of interstitial lung diseases (ILDs). Over time, the assessment of patients with ILD has transitioned from discussions among clinicians, radiologists and pathologists to the inclusion of a broader range of clinical data and specialist expertise. Studies have shown that a multidisciplinary approach can have many benefits for the clinical care of patients with ILD by improving the diagnostic confidence for different ILDs and guiding treatment decisions. The utility of MDT discussions for diagnosis, monitoring disease progression and management decisions, will need to be considered based on how it is best positioned in the diagnostic and therapeutic process, as well as the practicality and challenges of its use. There are also uncertainties and heterogeneity concerning the optimal practices of MDT meetings in ILD care. In this review, we describe recent developments refining the approach to MDTs in clinical practice, including who should be involved in the MDTs, when it is most needed, their use in patient management, challenges in their implementation, and ongoing controversies in the field that need further research.

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“…Only a few studies have examined how patients and healthcare professionals (HCPs) experience and perceive diagnostic trajectories and the barriers related to the pre-diagnostic period in patients with ARD-ILD. Previous research has primarily focused on SSc-ILD [ 20 , 21 , 22 ].…”

Section: Introductionmentioning

confidence: 99%

The diagnostic trajectories of Danish patients with autoimmune rheumatologic disease associated interstitial lung disease: an interview-based study

Johansen

Bendstrup

Davidsen

et al. 2023

European Clinical Respiratory Journal

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Background Autoimmune rheumatologic disease associated interstitial lung diseases (ARD-ILD) are rare conditions and the association between ARDs and respiratory symptoms often goes unrecognised by ARD patients and general practitioners (GPs). The diagnostic trajectory from the first respiratory symptoms to an ARD-ILD diagnosis is often delayed and may increase the burden of symptoms and allow further disease progression.The aim of this study was to 1) characterise the diagnostic trajectories of ARD-ILD patients and to 2) identify barriers for obtaining a timely ILD diagnosis based on the experiences and perceptions of both patients and healthcare professionals. Method Semi-structured qualitative interviews were conducted with Danish ARD-ILD patients, rheumatologists, pulmonologists and ILD nurses. Results Sixteen patients, six rheumatologists, three ILD nurses and three pulmonologists participated. Five characteristics of diagnostic trajectories were identified in the patient interviews: 1) early referral to lung specialists; 2) early delay; 3) delay or shortcut depending on specific circumstances; 4) parallel diagnostic trajectories connected late in the process; 5) early identification of lung involvement without proper interpretation. With the exception of early referral to lung specialists, all of the diagnostic trajectory characteristics identified led to delayed diagnosis. Delayed diagnostic trajectories resulted in patients experiencing increased uncertainty. Inconsistent disease terminology, insufficient knowledge and lack of awareness of ARD-ILD among central healthcare professionals and delayed referral to ILD specialists were main contributors to the diagnostic delay identified by the informants. Conclusion Five characteristics of the diagnostic trajectories were identified, four of which led to diagnostic delay of ARD-ILD. Improved diagnostic trajectories can shorten the diagnostic trajectory and increase early access to appropriate specialist medical care. Improved awareness and expertise in ARD-ILD across different medical specialties, especially among GPs, may contribute to more efficient and timely diagnostic trajectories and improved patient experiences.

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

Cited by 13 publications

References 31 publications

Epidemiology of interstitial lung diseases and their progressive-fibrosing behaviour in six European countries

Epidemiology of interstitial lung diseases and their progressive-fibrosing behaviour in six European countries

Multidisciplinary teams in the clinical care of fibrotic interstitial lung disease: current perspectives

The diagnostic trajectories of Danish patients with autoimmune rheumatologic disease associated interstitial lung disease: an interview-based study

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