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DOI: 10.1055/s-0042-1754390
Measuring Quality of Life after Venous Thromboembolism: Who, When, and How?
Abstract
There is a growing body of evidence revealing that many patients with a history of venous thromboembolism (VTE) suffer from long-lasting sequelae such as post-thrombotic syndrome and post-pulmonary embolism syndrome. These two syndromes are detrimental to patients as they affect their quality of life (QOL). From this perspective, monitoring QOL may play a crucial role to improve quality care in VTE patients. Many studies have explored possible temporal relations between VTE episodes and decreased functional status and/or QOL. However, studies exploring the implementation of QOL and functional status questionnaires in clinical practice are scarce. In this context, we discuss possible perspectives synthetized from available literature regarding in whom, when, and how QOL could be measured in clinical practice.
Publication History
Article published online:
02 September 2022
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References
- 1 Gibbons C, Porter I, Gonçalves-Bradley DC. et al. Routine provision of feedback from patient-reported outcome measurements to healthcare providers and patients in clinical practice. Cochrane Database Syst Rev 2021; 10 (10) CD011589
- 2 Barco S, Valerio L, Ageno W. et al. Age-sex specific pulmonary embolism-related mortality in the USA and Canada, 2000-18: an analysis of the WHO Mortality Database and of the CDC Multiple Cause of Death database. Lancet Respir Med 2021; 9 (01) 33-42
- 3 Sonne-Holm E, Kjærgaard J, Bang LE, Fosbøl E, Carlsen J, Winther-Jensen M. Pulmonary embolism: age specific temporal trends in incidence and mortality in Denmark 1999-2018. Thromb Res 2022; 210: 12-19
- 4 Kahn SR, Hirsch A, Shrier I. Effect of postthrombotic syndrome on health-related quality of life after deep venous thrombosis. Arch Intern Med 2002; 162 (10) 1144-1148
- 5 Sista AK, Klok FA. Late outcomes of pulmonary embolism: the post-PE syndrome. Thromb Res 2018; 164: 157-162
- 6 Tavoly M, Wik HS, Sirnes PA. et al. The impact of post-pulmonary embolism syndrome and its possible determinants. Thromb Res 2018; 171: 84-91
- 7 Nguyen H, Butow P, Dhillon H, Sundaresan P. A review of the barriers to using patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) in routine cancer care. J Med Radiat Sci 2021; 68 (02) 186-195
- 8 Ghanima W, Wik HS, Tavoly M, Enden T, Jelsness-Jørgensen LP. Late consequences of venous thromboembolism: measuring quality of life after deep vein thrombosis and pulmonary embolism. Thromb Res 2018; 164 (C): 170-176
- 9 Asady E, Ghanima W, Jelsness-Jorgensen LP. et al. Health-related quality-of-life questionnaires for deep vein thrombosis and pulmonary embolism: a systematic review on questionnaire development and methodology. Res Pract Thromb Haemost 2021; 5 (05) e12556
- 10 Rumsfeld JS, Alexander KP, Goff Jr DC. et al; American Heart Association Council on Quality of Care and Outcomes Research, Council on Cardiovascular and Stroke Nursing, Council on Epidemiology and Prevention, Council on Peripheral Vascular Disease, and Stroke Council. Cardiovascular health: the importance of measuring patient-reported health status: a scientific statement from the American Heart Association. Circulation 2013; 127 (22) 2233-2249
- 11 Basch E, Deal AM, Dueck AC. et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA 2017; 318 (02) 197-198
- 12 Basch E, Deal AM, Kris MG. et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol 2016; 34 (06) 557-565
- 13 Calvert M, Kyte D, Price G, Valderas JM, Hjollund NH. Maximising the impact of patient reported outcome assessment for patients and society. BMJ 2019; 364: k5267
- 14 Brooks R. EuroQol: the current state of play. Health Policy 1996; 37 (01) 53-72
- 15 Ware Jr JEJ, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992; 30 (06) 473-483
- 16 Kahn SR, Lamping DL, Ducruet T. et al; VETO Study investigators. VEINES-QOL/Sym questionnaire was a reliable and valid disease-specific quality of life measure for deep venous thrombosis. J Clin Epidemiol 2006; 59 (10) 1049-1056
- 17 Launois R, Reboul-Marty J, Henry B. Construction and validation of a quality of life questionnaire in chronic lower limb venous insufficiency (CIVIQ). Qual Life Res 1996; 5 (06) 539-554
- 18 Launois R. HealtCh-related quality-of-life scales specific for chronic venous disorders of the lower limbs. J Vasc Surg Venous Lymphat Disord 2015; 3 (02) 219-27 .e1, 3
- 19 CIVIQ users' guide.. CIVIQ users' guide. Accessed April 1, 2022 at: https://www.civiq-20.com/
- 20 Klok FA, Cohn DM, Middeldorp S. et al. Quality of life after pulmonary embolism: validation of the PEmb-QoL Questionnaire. J Thromb Haemost 2010; 8 (03) 523-532
- 21 Akaberi A, Klok FA, Cohn DM, Hirsch A, Granton J, Kahn SR. Determining the minimal clinically important difference for the PEmbQoL questionnaire, a measure of pulmonary embolism-specific quality of life. J Thromb Haemost 2018; 16 (12) 2454-2461
- 22 Kahn SR, Kearon C, Julian JA. et al; Extended Low-intensity Anticoagulation for Thrombo-embolism (ELATE) Investigators. Predictors of the post-thrombotic syndrome during long-term treatment of proximal deep vein thrombosis. J Thromb Haemost 2005; 3 (04) 718-723
- 23 Utne KK, Tavoly M, Wik HS. et al. Health-related quality of life after deep vein thrombosis. Springerplus 2016; 5 (01) 1278
- 24 Kahn SR, Shbaklo H, Lamping DL. et al. Determinants of health-related quality of life during the 2 years following deep vein thrombosis. J Thromb Haemost 2008; 6 (07) 1105-1112
- 25 Klok FA, van Kralingen KW, van Dijk APJ. et al. Quality of life in long-term survivors of acute pulmonary embolism. Chest 2010; 138 (06) 1432-1440
- 26 Tavoly M, Utne KK, Jelsness-Jørgensen LP. et al. Health-related quality of life after pulmonary embolism: a cross-sectional study. BMJ Open 2016; 6 (11) e013086
- 27 Chuang LH, Gumbs P, van Hout B. et al. Health-related quality of life and mortality in patients with pulmonary embolism: a prospective cohort study in seven European countries. Qual Life Res 2019; 28 (08) 2111-2124
- 28 Kahn SR, Akaberi A, Granton JT. et al. Quality of life, dyspnea, and functional exercise capacity following a first episode of pulmonary embolism: results of the ELOPE cohort study. Am J Med 2017; 130 (08) 990.e9-990 .e21
- 29 Valerio L, Barco S, Jankowski M. et al. Quality of life 3 and 12 months following acute pulmonary embolism: analysis from a prospective multicenter cohort study. Chest 2021; 159 (06) 2428-2438
- 30 Barco S, Schmidtmann I, Ageno W. et al; HoT-PE Investigators; HoT-PE Trial Investigators are. Survival and quality of life after early discharge in low-risk pulmonary embolism. Eur Respir J 2021; 57 (02) 2002368
- 31 Janssen MF, Szende A, Cabases J, Ramos-Goñi JM, Vilagut G, König HH. Population norms for the EQ-5D-3L: a cross-country analysis of population surveys for 20 countries. Eur J Health Econ 2019; 20 (02) 205-216
- 32 Højen AA, Gorst-Rasmussen A, Lip GYH. et al. Use of psychotropic drugs following venous thromboembolism in youth. A nationwide cohort study. Thromb Res 2015; 135 (04) 643-647
- 33 Kahn SR, Ducruet T, Lamping DL. et al. Prospective evaluation of health-related quality of life in patients with deep venous thrombosis. Arch Intern Med 2005; 165 (10) 1173-1178
- 34 Kahn SR. The post-thrombotic syndrome. Published online 2016:6
- 35 van Es J, den Exter PL, Kaptein AA. et al. Quality of life after pulmonary embolism as assessed with SF-36 and PEmb-QoL. Hematology Am Soc Hematol Educ Program 2016; Dec 2; 2016 (01) 413-418
- 36 Lukas PS, Krummenacher R, Biasiutti FD, Begré S, Znoj H, von Känel R. Association of fatigue and psychological distress with quality of life in patients with a previous venous thromboembolic event. Thromb Haemost 2009; 102 (06) 1219-1226
- 37 Giustozzi M, Valerio L, Agnelli G. et al. Sex-specific differences in the presentation, clinical course, and quality of life of patients with acute venous thromboembolism according to baseline risk factors. Insights from the PREFER in VTE. Eur J Intern Med 2021; 88: 43-51
- 38 Hunter R, Lewis S, Noble S, Rance J, Bennett PD. “Post-thrombotic panic syndrome”: a thematic analysis of the experience of venous thromboembolism. Br J Health Psychol 2017; 22 (01) 8-25
- 39 Rochat M, Méan M, Limacher A. et al. Quality of life after pulmonary embolism: validation of the French version of the PEmb-QoL questionnaire. Health Qual Life Outcomes 2014; 12: 174
- 40 Keller K, Tesche C, Gerhold-Ay A. et al. Quality of life and functional limitations after pulmonary embolism and its prognostic relevance. J Thromb Haemost 2019; 17 (11) 1923-1934
- 41 Tavoly M, Jelsness-Jørgensen LP, Wik HS, Roaldsnes C, Sandset PM, Ghanima W. Quality of life after pulmonary embolism: first cross-cultural evaluation of the pulmonary embolism quality-of-life (PEmb-QoL) questionnaire in a Norwegian cohort. Qual Life Res 2015; 24 (02) 417-425
- 42 Rolving N, Brocki BC, Andreasen J. Coping with everyday life and physical activity in the aftermath of an acute pulmonary embolism: a qualitative study exploring patients' perceptions and coping strategies. Thromb Res 2019; 182: 185-191
- 43 Kahn SR, Partsch H, Vedantham S, Prandoni P, Kearon C. Subcommittee on Control of Anticoagulation of the Scientific and Standardization Committee of the International Society on Thrombosis and Haemostasis. Definition of post-thrombotic syndrome of the leg for use in clinical investigations: a recommendation for standardization. J Thromb Haemost 2009; 7 (05) 879-883
- 44 Ambrosetti M, Abreu A, Corra U. et al. Secondary prevention through comprehensive cardiovascular rehabilitation: from knowledge to implementation. 2020 update. A position paper from the Secondary Prevention and Rehabilitation Section of the European Association of Preventive Cardiology. Eur J Prev Control 2021; 28 (05) 460-495
- 45 Rolving N, Brocki BC, Bloch-Nielsen JR. et al. Effect of a physiotherapist-guided home-based exercise intervention on physical capacity and patient-reported outcomes among patients with acute pulmonary embolism: a randomized clinical trial. JAMA Netw Open 2020; 3 (02) e200064
- 46 Haukeland-Parker S, Jervan Ø, Johannessen HH. et al. Pulmonary rehabilitation to improve physical capacity, dyspnea, and quality of life following pulmonary embolism (the PeRehab study): study protocol for a two-center randomized controlled trial. Trials 2021; 22 (01) 22
- 47 Launois R, Le Moine JG, Lozano FS, Mansilha A. Construction and international validation of CIVIQ-14 (a short form of CIVIQ-20), a new questionnaire with a stable factorial structure. Qual Life Res 2012; 21 (06) 1051-1058
- 48 Chan EKH, Edwards TC, Haywood K, Mikles SP, Newton L. Implementing patient-reported outcome measures in clinical practice: a companion guide to the ISOQOL user's guide. Qual Life Res 2019; 28 (03) 621-627
- 49 Boon GJAM, Barco S, Bertoletti L. et al. Measuring functional limitations after venous thromboembolism: optimization of the Post-VTE Functional Status (PVFS) Scale. Thromb Res 2020; 190: 45-51