Time taken from primary care referral to a specialist centre diagnosis of idiopathic pulmonary fibrosis: an opportunity to improve patient outcomes?

Brereton, Christopher J.; Wallis, Tim; Casey, Michelle; Fox, Lynn; Pontopiddan, Katarina; Laws, D. Richard; Graves, Jennifer; Titmuss, Vanessa; Kearney, Sarah G.; Evans, Sian; Grove, A; Hamid, Samreen; Richeldi, Luca; O’Reilly, Katherine Ma; Fletcher, Sophie; Jones, Mark G.

doi:10.1183/23120541.00120-2020

Cited by 20 publications

(22 citation statements)

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“…In this Finnish study only referral letters to tertiary care centres were evaluated, which may explain the higher percentage. However, in the United Kingdom and Ireland the time to secondary care respiratory clinic visit [47 days (25–84)] was significantly less than the time to an ILD specialist clinic visit [290 days (133–773)] ( 16 ). Given differences in the structure and complexities of healthcare systems, it is difficult to compare data from different countries.…”

Section: Discussionmentioning

confidence: 99%

“…Similarly, Pritchard et al found an association between dyspnoea and a shorter time to hospital referral, which was not observed for lung crackles or chronic cough ( 8 ). Other factors that may contribute to a delayed diagnosis include presence of specific comorbidities, male sex, increased body mass index, older age, previous inhalation therapy use, preserved diffusing capacity and better St. George's Respiratory Questionnaire scores ( 5 , 7 , 16 , 17 ). Lastly, abnormal chest imaging is one of the main reasons to initiate a hospital referral from primary care ( 8 , 18 ) and naming ILD on the thoracic CT radiologic report doubled the likelihood of a referral to a pulmonologist within 6 months ( 8 ).…”

Section: Discussionmentioning

confidence: 99%

“…However, to date, only a few studies have explored the reasons for diagnostic delays using data reported by pulmonary fibrosis patients (9)(10)(11)(12)(13). Most analyses are based on retrospective data obtained from healthcare records (5,7,8,(14)(15)(16)(17)(18).…”

Section: Introductionmentioning

confidence: 99%

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Patient Reported Experiences and Delays During the Diagnostic Pathway for Pulmonary Fibrosis: A Multinational European Survey

et al. 2021

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Introduction: Pulmonary fibrosis includes a spectrum of diseases and is incurable. There is a variation in disease course, but it is often progressive leading to increased breathlessness, impaired quality of life, and decreased life expectancy. Detection of pulmonary fibrosis is challenging, which contributes to considerable delays in diagnosis and treatment. More knowledge about the diagnostic journey from patients' perspective is needed to improve the diagnostic pathway. The aims of this study were to evaluate the time to diagnosis of pulmonary fibrosis, identify potential reasons for delays, and document patients emotions.Methods: Members of European patient organisations, with a self-reported diagnosis of pulmonary fibrosis, were invited to participate in an online survey. The survey assessed the diagnostic pathway retrospectively, focusing on four stages: (1) time from initial symptoms to first appointment in primary care; (2) time to hospital referral; (3) time to first hospital appointment; (4) time to final diagnosis. It comprised open-ended and closed questions focusing on time to diagnosis, factors contributing to delays, diagnostic tests, patient emotions, and information provision.Results: Two hundred and seventy three participants (214 idiopathic pulmonary fibrosis, 28 sarcoidosis, 31 other) from 13 countries responded. Forty percent of individuals took ≥1 year to receive a final diagnosis. Greatest delays were reported in stage 1, with only 50.2% making an appointment within 3 months. For stage 2, 73.3% reported a hospital referral within three primary care visits. However, 9.9% reported six or more visits. After referral, 76.9% of patients were assessed by a specialist within 3 months (stage 3) and 62.6% received a final diagnosis within 3 months of their first hospital visit (stage 4). Emotions during the journey were overall negative. A major need for more information and support during and after the diagnostic process was identified.Conclusion: The time to diagnose pulmonary fibrosis varies widely across Europe. Delays occur at each stage of the diagnostic pathway. Raising awareness about pulmonary fibrosis amongst the general population and healthcare workers is essential to shorten the time to diagnosis. Furthermore, there remains a need to provide patients with sufficient information and support at all stages of their diagnostic journey.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Patient Reported Experiences and Delays During the Diagnostic Pathway for Pulmonary Fibrosis: A Multinational European Survey

et al. 2021

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“…A prospective study of 129 patients with IPF evaluated at a US tertiary care center found that a greater time from onset of dyspnea to evaluation at the tertiary care center was associated with an increased risk of mortality, after adjustment for age, sex, FVC, payer, and educational attainment [ 19 ]. Among 247 patients with IPF from two specialist ILD centers in the UK, patients who were reviewed at a specialist center within 12 months of referral had higher FVC and lower mortality than patients who waited longer to be reviewed [ 20 ]. Three-year survival was significantly higher among 144 patients with non-IPF ILDs who received care at a specialized ILD clinic supported by a multidisciplinary team than in a historical cohort of 127 patients whose care was provided by pulmonologists without subspecialty training in ILD or at general clinics without specialized nursing support [ 21 ].…”

Section: Discussionmentioning

confidence: 99%

Associations between resources and practices of ILD centers and outcomes in patients with idiopathic pulmonary fibrosis: data from the IPF-PRO Registry

et al. 2022

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Background Performance benchmarks for the management of idiopathic pulmonary fibrosis (IPF) have not been established. We used data from the IPF-PRO Registry, an observational registry of patients with IPF managed at sites across the US, to examine associations between the characteristics of the enrolling sites and patient outcomes. Methods An online survey was used to collect information on the resources, operations, and self-assessment practices of IPF-PRO Registry sites that enrolled ≥ 10 patients. Site variability in 1-year event rates of clinically relevant outcomes, including death, death or lung transplant, and hospitalization, was assessed. Models were adjusted for differences in patient case mix by adjusting for known predictors of each outcome. We assessed whether site-level heterogeneity existed for each patient-level outcome, and if so, we investigated potential drivers of the heterogeneity. Results All 27 sites that enrolled ≥ 10 patients returned the questionnaire. Most sites were actively following > 100 patients with IPF (70.4%), had a lung transplant program (66.7%), and had a dedicated ILD nurse leader (77.8%). Substantial heterogeneity was observed in the event rates of clinically relevant outcomes across the sites. After controlling for patient case mix, there were no outcomes for which the site variance component was significantly different from 0, but the p-value for hospitalization was 0.052. Starting/completing an ILD-related quality improvement project in the previous 2 years was associated with a lower risk of hospitalization (HR 0.60 [95% CI 0.44, 0.82]; p = 0.001). Conclusions Analyses of data from patients with IPF managed at sites across the US found no site-specific characteristics or practices that were significantly associated with clinically relevant outcomes after adjusting for patient case mix. Trial registration ClinicalTrials.gov, NCT01915511. Registered 5 August 2013, https://clinicaltrials.gov/ct2/show/NCT01915511

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“…Surprisingly, in a primary care quality study, more than three-quarters of PFTs were invalid, according to the quality criteria of the American Thoracic Society and European Respiratory Society ( 8 ). A better understanding of pulmonary function parameters in final-year medical students and future physicians presents an opportunity to expedite diagnosis of respiratory diseases and therefore improve patient outcomes ( 9 ).…”

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confidence: 99%

Instructional Training Compared with Self-Study for Pulmonary Function Test Interpretation

et al. 2021

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Background Pulmonary diseases have considerable prognostic relevance for all-cause mortality. Most patients with lung diseases such as chronic obstructive pulmonary disease are treated by general practitioners. Understanding the clinical consequences such as pulmonary hyperinflation or reduced diffusion capacity is important for the management and prognosis of patients with chronic respiratory disorders. Therefore, the interpretation of pulmonary function testing (PFT) results needs to see more emphasis in the medical education curriculum. Objective To develop PFT training for final-year medical students and to compare the efficacy of instructional training to self-reliant textbook study. Methods A two-armed randomized control trial compares learning outcomes in PFT interpretation. A total of 25 final-year medical students were selected at random into the 1 ) instructional training group or 2 ) self-reliant textbook study group on PFT interpretation. The learning time for both groups was 2 hours. The duration of the written pre- and post-training examinations was 60 minutes each. Both exams had a knowledge section (30 questions, maximum 120 points) and a skills section (11 case studies, maximum 75 points). Results The instructional training group acquired significantly more knowledge and, in particular, higher skill levels when compared with the self-reliant reading group. In the reading group, knowledge scores increased from 48 to 60% (12%) and skills scores increased from 14 to 22% (8%), whereas in the instructional group, knowledge increased from 47 to 71% (24%) and skills from 18 to 58% (40%). A multivariate analysis (Pillai’s Trace: 0.633; P < 0.001) as well as follow-up univariate analyses reveal that these differences are statistically significant (knowledge: F = 8.811, df = 1, P = 0.007; skills F = 33.965, df = 1, P < 0.001). Interestingly, there was no significant group effect in the pure knowledge gain about respiratory disorders per se. Conclusion The self-reliant study group was less able to translate their newly acquired knowledge into interpretation of comprehensive PFT reports. A mandatory 2-hour instructional training greatly enhances the students’ knowledge and skills about PFT interpretation. Obligatory PFT instructional training should therefore be included in the students’ curriculum.

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Time taken from primary care referral to a specialist centre diagnosis of idiopathic pulmonary fibrosis: an opportunity to improve patient outcomes?

Cited by 20 publications

References 9 publications

Patient Reported Experiences and Delays During the Diagnostic Pathway for Pulmonary Fibrosis: A Multinational European Survey

Patient Reported Experiences and Delays During the Diagnostic Pathway for Pulmonary Fibrosis: A Multinational European Survey

Associations between resources and practices of ILD centers and outcomes in patients with idiopathic pulmonary fibrosis: data from the IPF-PRO Registry

Instructional Training Compared with Self-Study for Pulmonary Function Test Interpretation

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