Time from symptom onset to final diagnosis of pulmonary arterial hypertension in Polish patients

Bylica, Jan; Waligóra, Marcin; Owsianka, Izabella; Król, J; Podolec, Piotr; Kopeć, Grzegorz

doi:10.33963/kp.15344

Cited by 3 publications

(7 citation statements)

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“…In either case, automating TTE interpretation would likely improve the diagnostic pathway. 28 The number of specialist visits in this study is in line with previous data 13 , 16 including the DELAY study, which reported 3.0 (SD: 2.1) specialist reviews before patients were seen at an expert PH center, 8 and a study of 40 patients with CTEPH, in which patients were found to visit a median of 4 (IQR 4–5) different physicians (GPs and specialists) for a median of 13 (IQR 10–18) consultations before receiving a final PH/PAH diagnosis. 39 However, it is not clear from our data if the visits were with different specialists.…”

Section: Discussionsupporting

confidence: 91%

“…6,8,11,22 A 2019 analysis of a Polish registry found a slightly shorter median interval of 1.5 years, suggestive of improvement; however, 92% of patients were in WHO FC III/IV at diagnosis. 16 The REVEAL registry also found 72% of PAH patients were in WHO FC III/IV at diagnosis. 17 It is important to acknowledge the limitation that our data are based on administrative codes rather than clinical data.…”

Section: Discussionmentioning

confidence: 98%

“…Registry data from Australia, France, New Zealand and the USA between 2002 and 2017 have shown the average time from symptom onset to PAH diagnosis to be 2.3–3.9 years 6,8,11,22 . A 2019 analysis of a Polish registry found a slightly shorter median interval of 1.5 years, suggestive of improvement; however, 92% of patients were in WHO FC III/IV at diagnosis 16 . The REVEAL registry also found 72% of PAH patients were in WHO FC III/IV at diagnosis 17 .…”

Section: Discussionmentioning

confidence: 99%

“…Several registries have investigated the delay in diagnosis, but very few studies have characterized the patients' diagnostic journey. 6 , 8 , 16 …”

Section: Introductionmentioning

confidence: 99%

“…Several registries have investigated the delay in diagnosis, but very few studies have characterized the patients' diagnostic journey. 6,8,16 Large nationwide healthcare insurance claims and EHR databases are valuable and comprehensive sources of data collected during real-world clinical practice. Importantly, the use of this type of database allows a relatively large sample of patients with rare diseases such as PAH, compared with individual disease-specific assets.…”

Section: Introductionmentioning

confidence: 99%

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Time to diagnosis of pulmonary hypertension and diagnostic burden: A retrospective analysis of nationwide US healthcare data

et al. 2023

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The main aim of this analysis was to investigate time from symptom onset (chronic unexplained dyspnoea [CUD]) to diagnosis of Group 1 pulmonary hypertension (PH)—pulmonary arterial hypertension (PAH)—and to characterize healthcare resource utilization leading up to diagnosis using a nationwide US claims and an electronic health record (EHR) database from Optum © . Eligible patients were ≥18 years old at first CUD diagnosis (index event) and had a PAH diagnosis on or after index date. Based on administrative codes, PAH was defined as right heart catheterization (RHC), ≥ 2 PAH diagnoses (1 within a year of RHC), and ≥1 post‐RHC prescription for PAH treatment. All values are median (1st quartile–3rd quartile) unless otherwise stated. Of 854,722 patients with CUD in the claims database, 582 (0.1%) had PAH. Time from CUD to PAH diagnosis was 2.26 (0.73–4.22) years. PAH patients experienced 3 (2–4) transthoracic echocardiograms (TTEs), 6 (3–12) specialist visits, and 2 (1–4) hospitalizations during the diagnostic interval. Almost one‐third of patients (29%) waited 10 months or more to have a TTE. Findings from the EHR database were broadly similar. Resource utilization during the diagnostic interval was also analyzed in an overall PH cohort: findings were generally similar to the PAH cohort (2 [1–3] TTEs, 4 [2–9] specialist visits and 2 [1–4] hospitalizations). These data indicate a delay in the diagnostic pathway for PAH, and illustrate the burden associated with PAH diagnosis.

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Section: Discussionsupporting

confidence: 91%

Section: Discussionmentioning

confidence: 98%

Section: Discussionmentioning

confidence: 99%

“…Several registries have investigated the delay in diagnosis, but very few studies have characterized the patients' diagnostic journey. 6 , 8 , 16 …”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Time to diagnosis of pulmonary hypertension and diagnostic burden: A retrospective analysis of nationwide US healthcare data

et al. 2023

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Association of delayed diagnosis of pulmonary arterial hypertension with its prognosis

Kubota¹,

Miyanaga²,

Akao³

et al. 2024

Journal of Cardiology

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The diagnostic journey of pulmonary arterial hypertension patients: results from a multinational real-world survey

Small,

Perchenet,

Bennett

et al. 2024

Ther Adv Respir Dis

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Background: Pulmonary arterial hypertension (PAH) is a life-threatening, progressive disease often diagnosed late in its course. Objectives: To present patient-reported data that were captured within a large, multinational, point-in-time survey of PAH-treating physicians and their patients to better understand the diagnostic journey. Design: Cross-sectional survey conducted in five European countries (EU5), Japan and the USA. Methods: PAH-treating pulmonologists, cardiologists, rheumatologists or internists (USA only) completed a patient record form (PRF) for the next four consecutive adult PAH patients they saw; these patients filled in a patient self-completion (PSC) form on an anonymous, voluntary basis. Our report focuses on patient data; data are from PSC forms unless stated otherwise. Results: Physician-reported PRFs and self-completed PSC forms were obtained for 1152 and 572 patients, respectively. Patients’ mean (SD) age was 59.1 (14.0) years, 55.6% were female, and 57.3% had idiopathic PAH. Patient-reported data showed an average delay of 17.0 months between symptom onset and PAH diagnosis. This is longer than physicians estimated (13.8 months): this disparity may be partly due to the time taken by patients to consult a physician about their symptoms [9.6 months overall, longest in the USA (15.3 months)]. Most patients (71.6%) initially consulted primary care physicians about their symptoms and 76.4% of patients were referred to a specialist. Misdiagnoses occurred in 40.9% of patients [most frequent in the USA (51.3%), least common in Japan (27.6%)] and they saw an average of 2.9 physicians overall (3.5 in EU5 versus 2.0 in Japan/USA) before being diagnosed. Diagnosis was most often made by cardiologists (50.4%) or pulmonologists (49.3%). Conclusion: Our data suggest that diagnostic delay in PAH results from patient- and physician-related factors, which differ across regions and include lack of awareness of PAH on both sides. Development of better screening strategies may help address this barrier to timely PAH diagnosis.

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Time from symptom onset to final diagnosis of pulmonary arterial hypertension in Polish patients

Cited by 3 publications

References 0 publications

Time to diagnosis of pulmonary hypertension and diagnostic burden: A retrospective analysis of nationwide US healthcare data

Time to diagnosis of pulmonary hypertension and diagnostic burden: A retrospective analysis of nationwide US healthcare data

Association of delayed diagnosis of pulmonary arterial hypertension with its prognosis

The diagnostic journey of pulmonary arterial hypertension patients: results from a multinational real-world survey

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