Google Scholar, Kahn SR, Ginsberg JS: Relationship between deep venous thrombosis and the postthrombotic syndrome. Thromb Res. Recently, a large group of patients with persistent dyspnea, poor physical capacity, and reduced health-related quality of life (HRQoL) following pulmonary embolism (P 10.1207/s15327906mbr0102_10. 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). J Thromb Haemost 2009; 7: 1044–6. See this image and copyright information in PMC. Patient Prefer Adherence. We successfully validated the French version of the PEmb-QoL questionnaire in patients with PE. The long-term natural course in patients surviving an acute VTE event can be complicated by recurrent episodes of VTE, bleeding complications caused by anticoagulation treatment, the post-thrombotic syndrome and in rare cases, chronic thromboembolic pulmonary hypertension [4],[5]. Notably, items 6 (Interference with normal social activities), 8 (Intensity of breathlessness), and 9 g-i (Burden to family and friends, Afraid to exert yourself, Limited in taking a trip) were not taken into account in these three dimensions because these did not contribute significantly to either of them. As an alternative, items 6, 8, 9 g-i could be grouped into the dimension on which they loaded highest, i.e. 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].Besides the transient discomfort related to acute VTE, health-related quality of life is substantially influenced by the development of VTE-related complications []. Riva N, Borg Xuereb C, Makris M, Ageno W, Gatt A. 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. To estimate the overall impact of PE on quality of life, we developed a PEmb-QoL summary score. PubMed  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 … statement and This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. Blood. 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. 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. Of 242 patients with PE screened, 61 could not be reached, 42 refused to participate, 20 had dementia, 8 lived in a nursing home, 6 were unable to speak French, and 3 lived abroad, leaving a final study sample of 102 patients. We used standard statistical tests and criteria to evaluate the acceptability, reliability, and validity of the PEmb-QoL [6],[14],[16]. Epub 2009 Dec 15. Intra-class correlation coefficients for the test-retest analysis were high, ranging between 0.85 for social limitations and 0.96 for emotional complaints (Table 5). 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. 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]. Background: Even though quality of life (QoL) has becomeakeycomponentofmedicalcare,thereisnoinstrument available that specifically measures QoL after pulmonary embolism (PE). Dimension scores were then transformed to a scale from 0–100 to make them comparable across dimensions, with higher scores indicating worse outcome. 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). -, Kahn SR, Ginsberg JS. The PEmb-QoL assesses pulmonary signs and symptoms in addition to limitations in daily activities, and emotional and social complaints [9] , [10] . Introduction. 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. Quality of life in long-termsurvivorsof acute pulmonary embolism. Radiology 1992, 185: 381–387. Chest 2010;138:1432–40. The scores vary from 0 to 100 for each dimension, with higher values indicating better health [18],[19]. USA.gov. Patients with a prior history of pulmonary embolism (PE) were identified from the thrombosis registry at Østfold Hospital Trust, Fredrikstad, Norway. 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. Background. Background Early discharge of patients with acute low-risk pulmonary embolism (PE) requires validation by prospective trials with clinical and quality of life outcomes. 2008;359:2804–2813. Summary. PEmb-QoL dimensions were moderately well correlated between themselves (0.53 ≤ r ≤0.83), with the highest correlation being between intensity of complaints and frequency of complaints (r = 0.83) and between intensity of complaints and emotional complaints (r = 0.75). Additional file 1: The French version of the PEmb-QoL questionnaire. The local ethics committee (Commission cantonale (VD) d’éthique de la recherche sur l’être humain) approved the study and all patients provided written consent. 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). The authors declare that they have no competing interests. We decided that a time period of ten days between the repeated distributions of the questionnaires was long enough to prevent recall bias but short enough to ensure that a clinical change in the symptoms being measured was unlikely to occur. All authors read and approved the final manuscript. -the Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire-, based on symptoms as reported by 10 interviewed participants with severe complaints following PE. 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. Because acceptability affects the quality of the data obtained, it was assessed by examining completeness of data and score distribution. Life After a Pulmonary Embolism Having a pulmonary embolism (PE) can be a shocking and traumatic experience. PubMed  Because the factor analysis in the validation study by Klok et al. Only one dimension, work related problems, had a substantial ceiling effect, with 18% of patients scoring the maximum score (lowest possible quality of life) in this dimension. 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. We performed a forward and backward translation of the English version of the PEmb-QoL into French. National Center for Biotechnology Information, Unable to load your collection due to an error, Unable to load your delegates due to an error. In a second step, we averaged these transformed scores (except items Q2 and Q3) to obtain an overall summary score. doi: 10.1001/archinte.164.1.17. PubMed  Cite this: Addressing quality-of-life issues after an acute pulmonary embolism - Medscape - Jul 30, 2010. We successfully validated the French version of the PEmb-QoL questionnaire in patients with PE. Introduction Acute pulmonary embolism (PE) is a frequent life-threatening event and an important cause of hospitalisation, morbidity and mortality worldwide. Cite this article. Altman DG: Practical statistics for medical research. J Thromb Haemost. a systematic review on the quality of factor analysis of the SF-36. Assessing Sleep-Related Safety Behaviors: Adaptation and Validation of a French Version of the Sleep-Related Behaviors Questionnaire in a Nonclinical Sample. Ware JE Jr, Kosinski M, Dewey JE: How to score - Version 2 of the SF-36 Health Survey (Standard and Acute Forms). J Clin Epidemiol 2007, 60: 34–42. 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. The median (range) time between occurrence of the index PE and study enrollment was 15 (5–23) months. Quality of life after pulmonary embolism: validation of the … Standardized dimension and summary scores of the SF-36 questionnaire were calculated using the U.S. 1998 reference population [20]. We also performed an exploratory factor analysis. Thus, the French version of the PEmb-QoL questionnaire met standard criteria of reliability and validity for use as a patient-reported measure of outcome in patients with PE, as previously shown for the Dutch version of the questionnaire. Bern Open Repository and Information System, Konstantinides S. Acute pulmonary embolism. Criteria for acceptability included <15% floor and ceiling effects for dimensions and summary score [14]. In a first step, two independent native French speakers, of whom one was a naïve translator without medical background, performed a forward translation from the original English version into French. Overall, these correlations supported a good convergent validity. The effect of acute pulmonary embolism (PE) on patient quality of life (QoL) has been previously studied using both the generic Short Form 36 (SF-36) instrument as well as the more disease-specific pulmonary embolism quality of life (PEmb-QoL) instrument [1, 2].Klok et al. We regarded an item-total correlation >0.2 and an average inter-item correlation >0.3 as good [23]. Eligible, consenting patients received a baseline PEmb-QoL and a French language version of the Short-Form Health Survey (SF-36) questionnaire per mail [17]. Epub 2018 Nov 21. eCollection 2019. METHODS The multinational Home Treatment of Pulmonary Embolism (HoT-PE) single-arm management trial investigated early discharge followed by ambulatory treatment with rivaroxaban. A pulmonary embolism (PE) is the sudden blockage of a blood vessel in the lungs by an embolus. 1. 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). Originally developed in Dutch and English, we sought to prospectively validate the psychometric properties of a French version of the PEmb-QoL. Background: While the importance of patients' quality of life (QoL) in heart failure is increasingly been acknowledged and has become a treatment target, the burden of an acute pulmonary embolism (PE) on patient' QoL has received little attention thus far. Recently, the Pulmonary Embolism Quality of Life (PEmb-QoL) Questionnaire has been developed to address this gap. Quality of life after pulmonary embolism: validation of the French version of the PEmb-QoL questionnaire. Part of 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. Limited information on the long-term course of PE patients is available so far. N Engl J Med 2004, 350: 2257–2264. In conclusion, despite the presence of some floor and ceiling effects, the French version of the PEmb-QoL questionnaire meets standard criteria of reliability and validity for use as a patient-reported measure of quality of life and symptoms in patients with PE. 2010 Mar;8(3):523-32. doi: 10.1111/j.1538-7836.2009.03726.x. Article  (PDF 179 KB), http://creativecommons.org/licenses/by/4.0, http://creativecommons.org/publicdomain/zero/1.0/, https://doi.org/10.1186/s12955-014-0174-4. The study was stopped for efficacy after … 2008;168:425–430. 10.1016/j.jclinepi.2006.03.012. https://doi.org/10.1186/s12955-014-0174-4, DOI: https://doi.org/10.1186/s12955-014-0174-4. This article is published under license to BioMed Central Ltd. California Privacy Statement, Health-related quality of life (HRQoL) after deep vein thrombosis (DVT) has been extensively studied. 2007;5(Suppl 1):310–317. In a first step, we transformed all item scores to a scale ranging from 0 to 100. A PE can become life-threatening. 2004;164:17–26. Overall, 41 participants (40%) answered ‘I do not work’ for the question Q4a. EQ-5D-5L was 0.89±0.12 3 weeks after enrolment and improved to 0.91±0.12 at 3 months (p<0.0001). 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. 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]. Although clinical trials have demonstrated short-term benefit of catheter-based therapies to improve right ventricular (RV) dysfunction following acute pulmonary embolism (PE), 1–4 a paucity of data regarding long-term RV remodeling, functional status, and quality of life exists to guide integration of these revascularization strategies into evidence-based clinical practice. 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). Health Qual Life Outcomes. Multivariate Behav Res 1966, 1: 245–276. The PEmb-QoL is a validated 40-item questionnaire to quantify health-related quality of life in patients having experienced pulmonary embolism (PE). -, 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. 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. By using this website, you agree to our Correspondence to This study primarily aimed to evaluate the QoL of patients with acute PE in comparison to population norms and to patients with other cardiopulmonary diseases, using a … While instruments to measure disease-specific quality of life exist for patients with DVT [6], the Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire was only recently developed to specifically address health-related quality of life in patients having experienced PE [7],[8]. After rotation, the three factors accounted for 35%, 22%, and 19% of the total variance, respectively. 10.1023/A:1015291021312, Kahn SR, Shbaklo H, Lamping DL, Holcroft CA, Shrier I, Miron MJ, Roussin A, Desmarais S, Joyal F, Kassis J, Solymoss S, Desjardins L, Johri M, Ginsberg JS: Determinants of health‐related quality of life during the 2 years following deep vein thrombosis. Objective: To evaluate the validity of the PEmb-QoL questionnaire. Arch Intern Med 2004, 164: 17–26. The scales of Q1, Q4, Q5, and Q9 were reversed, with a low point score indicating a better quality of life. PubMed Google Scholar. Background Early discharge of patients with acute low-risk pulmonary embolism (PE) requires validation by prospective trials with clinical and quality of life outcomes. 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]. Methods The multinational Home Treatment of Pulmonary Embolism (HoT-PE) single-arm management trial investigated early discharge followed by ambulatory treatment with rivaroxaban. 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. Study of indices of changes of physical abilities, psychic state and social adaptation of an individual defined as quality of life are important in treatment of patients with PE. The PREFER in VTE registry, a prospective, observational study conducted in seven European countries, was used. 10.1001/archinternmed.2007.69, PubMed Central  The SF-36 also provides a physical and mental health summary score. Ware JE Jr: SF-36 health survey update. Google Scholar, Cohn DM, Nelis EA, Busweiler LA, Kaptein AA, Middeldorp S: Quality of life after pulmonary embolism: the development of the PEmb-QoL questionnaire.  |  We could not exclude the possibility that the Likert scale used did not have a large enough range to accommodate the distribution of the data or that there was a social desirability bias (i.e., patients thought it made them look better if they reported high quality of life). Spine (Phila Pa 1976) 2000, 25: 3186–3191. Construct validity refers to the extent to which PEmb-QoL scores relate to other measures in a manner consistent with theoretically derived hypotheses [14]. N Engl J Med. Patient outcomes after deep vein thrombosis and pulmonary embolism: the Worcester Venous Thromboembolism Study. … Recently, the Pulmonary Embolism Quality of Life (PEmb-QoL) Questionnaire has been developed to address this gap. Med Care 1992, 30: 473–483.  |  Background: Early discharge of patients with acute low-risk pulmonary embolism (PE) requires validation by prospective trials with clinical and quality of life outcomes. 2019 Jun 19;13:969-979. doi: 10.2147/PPA.S207498. QualityMetric, Incorporated, Lincoln, Rhode Island; 2001. Google Scholar, de Vet HC, Ader HJ, Terwee CB, Pouwer F: Are factor analytical techniques used appropriately in the validation of health status questionnaires? COVID-19 is an emerging, rapidly evolving situation. 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. Terms and Conditions, Background: 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. All item-total correlation values were >0.2, ranging from 0.53 to 0.92 (data not shown for individual items). Arch Intern Med. HHS Responses are rated on a Likert response scale. Our hypothesis was that correlation with age, gender, and clinical characteristics would be weak. N Engl J Med. -. Background. © 2021 BioMed Central Ltd unless otherwise stated. Quality of life after pulmonary embolism: Prospective validation of the German version of the PEmb-QoL questionnaire. The impact on RV remodeling, functional status, and quality of life over the long-term remains unclear. Indeed, floor effects >15% were also observed in all six dimensions in the Norwegian version of the PEmb-QoL [10]. The confirmation of PE was based on either a high-probability ventilation-perfusion lung scan or a positive computed tomography scan [12],[13]. doi: 10.1056/NEJMoa032274. Our results show that the PEmb-QoL is a valuable tool for assessing health-related quality of life after PE in French-speaking patients. Little is known about the quality of life following pulmonary embolism (PE). We performed a forward and backward translation of the English version of the PEmb-QoL into French. Baseline characteristics were shown as proportions or medians and ranges, as appropriate. Health and Quality of Life Outcomes To cite this article: Cohn DM, Nelis EA, Busweiler LA, Kaptein AA, Middeldorp S. Quality of life after pulmonary embolism: the development of the PEmb-QoL questionnaire. 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