quality of life after pulmonary embolism

Background We aimed to evaluate health-related quality of life (QOL), dyspnea, and functional exercise capacity during the year following the diagnosis of a first episode of pulmonary embolism. J Thromb Haemost 2010, 8: 523–532. Median transformed scores were 9.4 (interquartile range [IQR] 3.1-21.9) for frequency of complaints (FC), 15.4 (IQR 3.8-41.7) for activities of daily living limitations (AL), 0.0 (IQR 0.0-50.0) for work-related problems (WP), 0.0 (IQR 0.0-25.0) for social limitations (SL), 20.0 (IQR 10.0-40.0) for intensity of complaints (IC), 14.0 (IQR 6.0-34.0) for emotional complaints (EC), and 14.7 (IQR 5.9-36.3) for the PEmb-QoL summary score (PEmb). 2020 Jan-Feb;18(1):107-119. doi: 10.1080/15402002.2018.1546178. First, only 42% of potentially eligible persons with PE completed the questionnaires, mostly, because they were unreachable or refused to participate. We did a correlation analysis using SF-36 component scores to assess convergent validity of the PEmb-QoL dimension and overall summary scores. Purpose: The aim of the current study was to translate and test the psychometrical properties of the disease-specific pulmonary embolism quality-of-life questionnaire (PEmb-QoL). [8] already observed such floor and ceiling effects in some of the PEmb-QoL dimensions, we presumed that the floor and ceiling effects were not specifically related to the French version of the PEmb-QoL questionnaire. Klok FA, Cohn DM, Middeldorp S, Scharloo M, Büller HR, van Kralingen KW, Kaptein AA, Huisman MV. Because the factor analysis in the validation study by Klok et al. Results: Background: Most pulmonary embolism (PE) research has focused on outcomes such as mortality and PE recurrence.Patient-centered outcomes such as persistent dyspnea, impaired quality of life (QOL) and reduced walking capacity after PE have been largely unstudied. Because both questionnaires were developed to assess health-related quality of life, we assumed that the two measures would be correlated in a moderate range, one being a disease-specific and the other a generic health-related quality of life questionnaire. Acute venous thromboembolism (VTE), defined as deep vein thrombosis (DVT) and/or pulmonary embolism (PE), is common and has a high impact on morbidity, mortality, and costs of care [1],[2]. It covers six health dimensions: frequency of complaints, activities of daily living limitations, work-related problems, social limitations, intensity of complaints, and emotional complaints. We successfully validated the French version of the PEmb-QoL questionnaire in patients with PE. A similar observation had been made by Klok et al. The correlation between intensity of complaints and bodily pain was clinically also plausible. Mathilde Rochat. Quality of life after pulmonary embolism: validation of the … Recently, a large group of patients with persistent dyspnea, poor physical capacity, and reduced health-related quality of life (HRQoL) following pulmonary embolism (P Although quality of life (QoL) is recognized as an important indicator of the course of a disease, it has rarely been addressed in studies evaluating the outcome of care for patients with pulmonary embolism (PE). Ware JE Jr: SF-36 health survey update. Klok FA, van KralingenKW, van Dijk AP, et al. Summary.  |  The exploratory factor analysis suggested three underlying dimensions: limitations in daily activity (items 4b-m, 5a-d), symptoms (items 1a-h and 7), and emotional complaints (items 9a-f and j). As described in the initial publication [8], the PEmb-QoL dimension scores were calculated by taking the mean of the constituting items. To our knowledge, studies evaluating the quality of life (QoL) in patients with a history of acute pulmonary embolism (PE) are not available, even though QoL is a key outcome component of medical care and a predictor of disease-specific prognosis. Cite this: Addressing quality-of-life issues after an acute pulmonary embolism - Medscape - Jul 30, 2010. The PEmb-QoL is a validated 40-item questionnaire to quantify health-related quality of life in patients having experienced pulmonary embolism (PE). 10.1111/j.1538-7836.2009.03341.x, Klok FA, Cohn DM, Middeldorp S, Scharloo M, Buller HR, van Kralingen KW, Kaptein AA, Huisman MV: Quality of life after pulmonary embolism: validation of the PEmb-QoL Questionnaire. 2007;5(Suppl 1):310–317. N Engl J Med. Epub 2009 Dec 15.  |  It covers six domains: frequency of complaints (eight items), activities of daily life (ADL) limitations (13 items), work-related problems (four items), social limitations (one item), inten- PubMed  2019 Aug 28;12:741-752. doi: 10.2147/PRBM.S216617. Methods: The multinational Home Treatment of Pulmonary Embolism (HoT-PE) single-arm management trial investigated early discharge followed by ambulatory treatment with rivaroxaban. MR and MM collected the data. The exceptionally high floor effect (66%) of social limitations could be explained by the fact that this dimension consists of a single question only. 2008;359:2804–2813. Recently, the Pulmonary Embolism Quality of Life (PEmb‐QoL) Questionnaire has been developed to address this gap. In addition to dealing with what can be a very painful condition, you may also feel scared about how it could affect your health and worried that it could happen again. It covers six health dimensions: frequency of complaints, activities of daily living limitations, work-related problems, social limitations, intensity of complaints, and emotional complaints. The high score correlations between the PEmb-QoL and the SF-36 and the low correlation between PEmb-QoL scores and patient characteristics supported convergent and discriminant validity, respectively. 10.1001/jama.1990.03440200057023, Remy-Jardin M, Remy J, Wattinne L, Giraud F: Central pulmonary thromboembolism: diagnosis with spiral volumetric CT with the single-breath-hold technique—comparison with pulmonary angiography. 10.1056/NEJMoa032274. Life After a Pulmonary Embolism Having a pulmonary embolism (PE) can be a shocking and traumatic experience. For those that survive the pulmonary embolism there is the possibility of decreased life expectancy and the development of complications that can impair quality of life. Criteria for acceptability included <15% floor and ceiling effects for dimensions and summary score [14]. Background Pulmonary embolism (PE) reduces quality of life (QOL). Life After a Pulmonary Embolism Having a pulmonary embolism (PE) can be a shocking and traumatic experience. Given that patients in our cohort were older (63 vs. 56 years) and less likely to have cardiopulmonary comorbidity (13% vs. 20%) and obesity (13% vs. 39%) than patients in the study by Klok et al. Summary. We used patient medical records to collect the following baseline characteristics for all enrolled patients: age, gender, cardiopulmonary comorbidity (defined as any cardiac disease with systolic or diastolic ventricular dysfunction or any obstructive or restrictive pulmonary disease), active cancer (defined as cancer with ongoing oncologic or palliative treatment within the previous six months), obesity (defined as body mass index more than 30 kg/m2), history of prior VTE, and the time interval between the index PE and study inclusion. Second, we could not ascertain the number of missing items per patient because missing items were completed by participants following contact by phone with a study collaborator. doi: 10.1056/NEJMcp0804570. PubMed  Cookies policy. Cohn DM, Nelis EA, Busweiler LA, Kaptein AA, Middeldorp S. PMID: 19320823 [PubMed - indexed for MEDLINE] Publication Types: Letter; Research Support, Non-U.S. Gov't; MeSH Terms. 10.1097/00007632-200012150-00014, CAS  This overall score met standard criteria of acceptability, reliability, reproducibility, and validity for use as a summary patient-reported measure of outcome in patients with acute PE. Qual Life Res 2005, 14: 1203–1218. 10.1111/j.1538-7836.2009.03726.x, van Es J, den Exter PL, Kaptein AA, Andela CD, Erkens PM, Klok FA, Douma RA, Mos IC, Cohn DM, Kamphuisen PW, Huisman MV, Middeldorp S: Quality of life after pulmonary embolism as assessed with SF-36 and PEmb-QoL. Google Scholar, Pengo V, Lensing AW, Prins MH, Marchiori A, Davidson BL, Tiozzo F, Albanese P, Biasiolo A, Pegoraro C, Iliceto S, Prandoni P: Incidence of chronic thromboembolic pulmonary hypertension after pulmonary embolism. Bern Open Repository and Information System, Konstantinides S. Acute pulmonary embolism. Quality of life after pulmonary embolism: validation of the French version of the PEmb-QoL questionnaire. All questionnaires were returned by participants (response rate 100%). The aim of the current study was to translate and test the psychometrical properties of the disease-specific pulmonary embolism quality-of-life questionnaire (PEmb-QoL). QualityMetric, Incorporated, Lincoln, Rhode Island; 2001. 10.1148/radiology.185.2.1410342, Terwee CB, Bot SD, de Boer MR, van der Windt DA, Knol DL, Dekker J, Bouter LM, de Vet HC: Quality criteria were proposed for measurement properties of health status questionnaires. While the importance of patients’ quality of life (QoL) in chronic cardiac or pulmonary disease is uncontroversial, the burden of an acute pulmonary embolism … doi: 10.1001/archinternmed.2007.69. N Engl J Med. Part of Patients were asked to complete and return both questionnaires using a pre-stamped return envelope. Dimension scores were then transformed to a scale from 0–100 to make them comparable across dimensions, with higher scores indicating worse outcome. Dyspnea, quality of life and walking capacity during 1 year follow-up after a first episode of pulmonary embolism: results of the E.L.O.P.E. Methods The multinational Home Treatment of Pulmonary Embolism (HoT-PE) single-arm management trial investigated early discharge followed by ambulatory treatment with rivaroxaban. A similar approach was used in previous studies examining discriminant validity of a similarly structured quality of life questionnaire for DVT [6],[16]. In case a patient returned an incomplete questionnaire, a study collaborator contacted the patient by telephone to complete all missing items. The scores vary from 0 to 100 for each dimension, with higher values indicating better health [18],[19]. Introduction Acute pulmonary embolism (PE) is a frequent life-threatening event and an important cause of hospitalisation, morbidity and mortality worldwide. Blood. Our hypothesis was that correlation with age, gender, and clinical characteristics would be weak. The PEmb-QoL questionnaire contains nine questions (40 items) covering six dimensions: frequency of complaints (Q1, 8 items), activities of daily living limitations (Q4, 13 items), work-related problems (Q5, 4 items), social limitations (Q6, 1 item), intensity of complaints (Q7 and Q8, 1 item each), and emotional complaints (Q9, 10 items). Either way, further validations of this adapted PEmb-QoL questionnaire would be necessary. Ceiling effects were ≤2% for all dimensions except for work-related problems (18%). Methods This was a prospective multicenter cohort study of 100 patients with acute pulmonary embolism recruited at 5 Canadian hospitals from 2010-2013. Quality of life after pulmonary embolism as assessed with SF-36 and PEmb-QoL By Josien van Es, Paul L. den Exter, Ad A. Kaptein, Cornelie D. Andela, Petra M. G. Erkens, Frederikus A. Klok, Renee A. Douma, Inge C. M. Mos, Danny M. Cohn, Pieter W. Kamphuisen, Menno V. Huisman and Saskia Middeldorp eCollection 2019. The PEmb-QoL, originally developed in Dutch and translated into English, is a 40-item questionnaire that measures the impact of PE on quality of life from the patient’s perspective over the past four weeks [7],[8]. The scales of Q1, Q4, Q5, and Q9 were reversed, with a low point score indicating a better quality of life. https://doi.org/10.1186/s12955-014-0174-4, DOI: https://doi.org/10.1186/s12955-014-0174-4. French-speaking consecutive adult patients with an acute, objectively confirmed PE admitted to the emergency department of a Swiss university hospital between 08/2009 and 09/2011 were recruited telephonically. National Center for Biotechnology Information, Unable to load your collection due to an error, Unable to load your delegates due to an error. 1. We contacted 33 participants (32%) by phone to complete missing items. McGraw-Hill, New York; 1994. Konstantinides S: Acute pulmonary embolism. The postal questionnaire will contain questions on disease symptoms, comorbidity, health-related quality of life (Pulmonary Embolism Quality of Life Questionnaire,16 EQ-5D,13 anxiety and depression (Hospital anxiety and depression scale14), dyspnoea, major bleeding complications, recurrent events and healthcare utilisation (readmissions, visits to physicians, clinics and emergency departments). A PE can become life-threatening. Article  Background: Even though quality of life (QoL) has become a key component of medical care, there is no instrument available that specifically measures QoL after pulmonary embolism (PE). Quality of life in long-termsurvivorsof acute pulmonary embolism. Construct validity refers to the extent to which PEmb-QoL scores relate to other measures in a manner consistent with theoretically derived hypotheses [14]. Aims and objectives. Quality of life after pulmonary embolism: first cross-cultural evaluation of the pulmonary embolism quality-of-life (PEmb-QoL) questionnaire in a Norwegian cohort Tijdschrift: Quality of Life Research > Uitgave 2/2015 Auteurs: Background: Even though quality of life (QoL) has become a key component of medical care, there is no instrument available that specifically measures QoL after pulmonary embolism (PE). We chose a sample size of 100 patients to validate the French version of the PEmb-QoL questionnaire, which is in accordance with methodological recommendations [14],[15] and a previous similar validation study [16]. J Vasc Surg 2003, 37: 410–419. [8] did not explore the appropriate number of latent factors (underlying dimensions) but rather sought to confirm the pre-specified structure of the questionnaire based on six dimensions, we explored the number of underlying dimensions and grouping of items in an exploratory factor analysis. Google Scholar, de Vet HC, Ader HJ, Terwee CB, Pouwer F: Are factor analytical techniques used appropriately in the validation of health status questionnaires? Background: It is well known that measurement properties of QoL questionnaires adapted for a different population may differ from their original version due to differing translational, cultural, and methodological factors [11],[21],[24]. Arch Intern Med. 2018 Jun;166:86-91. doi: 10.1016/j.thromres.2018.04.020. Relationship between deep venous thrombosis and the postthrombotic syndrome. Introduction. Finally, we were not able to assess responsiveness of the PEmb-QoL questionnaire, that is, its ability to detect a clinically meaningful change over time [8]. Background: Even though quality of life (QoL) has become a key component of medical care, there is no instrument available that specifically measures QoL after pulmonary embolism (PE). Depending on the underlying cause of the pulmonary embolism, patients remain on anticoagulation medication for several weeks to months after treatment to prevent clots from redeveloping, with periodic checkups for incidence of bleeding. Objectives: To assess the long-term risk for adverse events after PE.. Methods: Consecutive patients diagnosed with PE between January 2001 and July 2007, and patients in whom PE was ruled out from a previous study were followed until July 2008 for the occurrence of … [8] showed that items designated to social limitations and intensity of complaints had higher loadings in other dimensions, suggesting that these two dimensions might not be justifiable. Overall, 102 patients were enrolled in the study. In a second step, two naïve English speakers performed a backward translation into English. All dimensions had floor effects, ranging from 13% for emotional complaints (Q9) to 66% for social limitations (Q6) (Table 2). 3rd edition. Female sex and cardiopulmonary disease were associated with poorer disease-specific and generic quality of life; older age, with faster worsening of generic quality of life. The Pulmonary Embolism Quality of Life questionnaire (PEmb-QoL) is a 40-item questionnaire to measure health-related quality of life in patients with pulmonary embolism. -, Pengo V, Lensing AW, Prins MH, Marchiori A, Davidson BL, Tiozzo F, Albanese P, Biasiolo A, Pegoraro C, Iliceto S, Prandoni P, Thromboembolic Pulmonary Hypertension Study Group Incidence of chronic thromboembolic pulmonary hypertension after pulmonary embolism. Objective: To evaluate the validity of the PEmb‐QoL questionnaire. Multivariate Behav Res 1966, 1: 245–276. Med Care 1992, 30: 473–483. Additional file 1: The French version of the PEmb-QoL questionnaire. Depending on the underlying cause of the pulmonary embolism, patients remain on anticoagulation medication for several weeks to months after treatment to prevent clots from redeveloping, with periodic checkups for incidence of bleeding. The PEmb-QoL dimensions activities of daily living limitations, work-related problems, social limitations, and intensity of complaints showed higher correlations with the SF-36 Physical Component Summary, whereas frequency of complaints and emotional complaints had higher correlations with the SF-36 Mental Component Summary (Table 6). To examine floor and ceiling effects, we calculated the proportion of patients who achieved the lowest or highest possible score per dimension and in the overall PEmb-QoL summary score. The French version of the PEmb-QoL showed good reliability (internal consistency, item–total and inter-item correlations), reproducibility (test-retest reliability), and validity (convergent, discriminant) in French-speaking patients with PE. To estimate the overall impact of PE on quality of life, we developed a PEmb-QoL summary score. Returned an incomplete questionnaire, a Norwegian version of the PEmb-QoL is a lack information... 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