Venous thromboembolism (VTE) encompasses deep vein thrombosis (DVT) and pulmonary embolism (PE). With an incidence of 1 to 2 per 1000 adults annually and a case fatality rate of up to 10% when VTE occurs as PE, it is the third most common cause of cardiovascular death in the world after myocardial infarction and stroke.1.Raskob G.E. Angchaisuksiri P. Blanco A.N. et al.ISTH steering Committee for World Thrombosis day. Thrombosis: a major contributor to global disease burden.Arterioscler Thromb Vasc Biol. 2014; 34: 2363-2371Crossref PubMed Scopus (9) Google Scholar, 2.Cohen A.T. Agnelli G. Anderson F.A. et al.Venous thromboembolism (VTE) in Europe. The number of VTE events and associated morbidity and mortality.Thromb Haemost. 2007; 98: 756-764Crossref PubMed Google Scholar, 3.Stevens S.M. Woller S.C. Kreuziger L.B. et al.Antithrombotic therapy for VTE disease: second update of the CHEST guideline and expert panel report.Chest. 2021; 160: e545-e608https://doi.org/10.1016/j.chest.2021.07.055Abstract Full Text Full Text PDF PubMed Scopus (124) Google Scholar Hence, VTE is a major public health issue and public health agencies promote active research in VTE. However, despite major advances in the understanding of pathophysiology and treatment modalities, the prognosis of VTE has not changed over the past 20 years and management remains challenging.1.Raskob G.E. Angchaisuksiri P. Blanco A.N. et al.ISTH steering Committee for World Thrombosis day. Thrombosis: a major contributor to global disease burden.Arterioscler Thromb Vasc Biol. 2014; 34: 2363-2371Crossref PubMed Scopus (9) Google Scholar, 2.Cohen A.T. Agnelli G. Anderson F.A. et al.Venous thromboembolism (VTE) in Europe. The number of VTE events and associated morbidity and mortality.Thromb Haemost. 2007; 98: 756-764Crossref PubMed Google Scholar, 3.Stevens S.M. Woller S.C. Kreuziger L.B. et al.Antithrombotic therapy for VTE disease: second update of the CHEST guideline and expert panel report.Chest. 2021; 160: e545-e608https://doi.org/10.1016/j.chest.2021.07.055Abstract Full Text Full Text PDF PubMed Scopus (124) Google Scholar, 4.Konstantinides S.V. Meyer G. Becattini C. et al.ESC scientific document group. 2019 ESC guidelines for the diagnosis and management of acute pulmonary embolism developed in collaboration with the European Respiratory Society (ERS).Eur Heart J. 2020; 41: 543-603Crossref PubMed Scopus (1428) Google Scholar Anticoagulant therapy, the mainstay of VTE treatment, drastically reduces the risk of early VTE recurrence and death, but it exposes patients to a substantial risk of bleeding.3.Stevens S.M. Woller S.C. Kreuziger L.B. et al.Antithrombotic therapy for VTE disease: second update of the CHEST guideline and expert panel report.Chest. 2021; 160: e545-e608https://doi.org/10.1016/j.chest.2021.07.055Abstract Full Text Full Text PDF PubMed Scopus (124) Google Scholar, 4.Konstantinides S.V. Meyer G. Becattini C. et al.ESC scientific document group. 2019 ESC guidelines for the diagnosis and management of acute pulmonary embolism developed in collaboration with the European Respiratory Society (ERS).Eur Heart J. 2020; 41: 543-603Crossref PubMed Scopus (1428) Google Scholar In this setting, the main well defined and standardized outcomes addressed in treatment clinical trials during the 50 past years were recurrent VTE (non‐fatal and fatal recurrences), bleeding (major and clinically relevant non‐major bleeding), and mortality of all causes. Despite major improvement in antithrombotic management, the prognosis of patients with VTE remains poor in more than 50% of cases for the following reasons. First, at 3 to 6 months of anticoagulant therapy, 30% of patients will have developed chronic and irreversible sequelae due to incomplete thrombus resolution, which are associated with impaired quality of life and a potential increased mortality: at least one quarter of patients will develop chronic thromboembolic disease and approximately 4% (incident and prevalent) chronic thromboembolic pulmonary hypertension after PE, while patients after a DVT face a 30% risk of post‐thrombotic syndrome.3.Stevens S.M. Woller S.C. Kreuziger L.B. et al.Antithrombotic therapy for VTE disease: second update of the CHEST guideline and expert panel report.Chest. 2021; 160: e545-e608https://doi.org/10.1016/j.chest.2021.07.055Abstract Full Text Full Text PDF PubMed Scopus (124) Google Scholar, 4.Konstantinides S.V. Meyer G. Becattini C. et al.ESC scientific document group. 2019 ESC guidelines for the diagnosis and management of acute pulmonary embolism developed in collaboration with the European Respiratory Society (ERS).Eur Heart J. 2020; 41: 543-603Crossref PubMed Scopus (1428) Google Scholar, 5.Becattini C. Giustozzi M. Cerdà P. Cimini L.A. Riera‐Mestre A. Agnelli G. Risk of recurrent venous thromboembolism after acute pulmonary embolism: role of residual pulmonary obstruction and persistent right ventricular dysfunction. A meta‐analysis.J Thromb Haemost. 2019; 17: 1217-1228Abstract Full Text Full Text PDF PubMed Scopus (20) Google Scholar In addition to these major issues, there is growing evidence that more than one third will develop post‐traumatic stress syndrome or even depression.6.Haxaire C. Tromeur C. Couturaud F. Leroyer C. A qualitative study to appraise patients and family members perceptions, knowledge, and attitudes towards venous thromboembolism risk.PLoS One. 2015; 10Crossref Scopus (8) Google Scholar, 7.Mahé I. Chidiac J. Pinson M. et al.Patients experience of living with cancer associated thrombosis in France (Le PELICAN).Thromb Res. 2020; 194: 66-71Abstract Full Text Full Text PDF PubMed Scopus (10) Google Scholar, 8.Klok F.A. Cohn D.M. Middeldorp S. et al.Quality of life after pulmonary embolism: validation of the PEmb‐QoL questionnaire.J Thromb Haemost. 2010; 8: 523-532Abstract Full Text Full Text PDF PubMed Scopus (73) Google Scholar, 9.Hunter R. Noble S. Lewis S. Bennett P. Long‐term psychosocial impact of venous thromboembolism: a qualitative study in the community.BMJ Open. 2019; 9Crossref Scopus (41) Google Scholar Second, VTE was historically mainly considered an acute condition, for which 3 months of anticoagulation was proposed for the majority of patients, but in the past 20 years this paradigm has changed: VTE is now more often recognized as a chronic disease (or condition, with genetic or associated acquired risk factors) in a high proportion of patients rather than an acute isolated phenomenon. In more than 50% of cases, patients not only have chronic sequelae but they have an increased risk of recurrent VTE, persisting over the lifetime.3.Stevens S.M. Woller S.C. Kreuziger L.B. et al.Antithrombotic therapy for VTE disease: second update of the CHEST guideline and expert panel report.Chest. 2021; 160: e545-e608https://doi.org/10.1016/j.chest.2021.07.055Abstract Full Text Full Text PDF PubMed Scopus (124) Google Scholar, 4.Konstantinides S.V. Meyer G. Becattini C. et al.ESC scientific document group. 2019 ESC guidelines for the diagnosis and management of acute pulmonary embolism developed in collaboration with the European Respiratory Society (ERS).Eur Heart J. 2020; 41: 543-603Crossref PubMed Scopus (1428) Google Scholar, 10.Couturaud F. Sanchez O. Pernod G. et al.Six months vs extended Oral anticoagulation after a first episode of pulmonary embolism: the PADIS‐PE randomized clinical trial.Jama. 2015; 314: 31-40Crossref PubMed Scopus (188) Google Scholar, 11.Khan F. Rahman A. Carrier M. et al.Long term risk of symptomatic recurrent venous thromboembolism after discontinuation of anticoagulant treatment for first unprovoked venous thromboembolism event: systematic review and meta‐analysis.BMJ. 2019; 366: l4363Crossref PubMed Scopus (116) Google Scholar In patients with unprovoked VTE (no clinical circumstances), if anticoagulation is stopped beyond the initial 3 to 6 months of treatment, more than one third will develop recurrent VTE, with an almost unchanged case fatality rate reaching up to 10% when recurrence occurred as PE.10.Couturaud F. Sanchez O. Pernod G. et al.Six months vs extended Oral anticoagulation after a first episode of pulmonary embolism: the PADIS‐PE randomized clinical trial.Jama. 2015; 314: 31-40Crossref PubMed Scopus (188) Google Scholar, 11.Khan F. Rahman A. Carrier M. et al.Long term risk of symptomatic recurrent venous thromboembolism after discontinuation of anticoagulant treatment for first unprovoked venous thromboembolism event: systematic review and meta‐analysis.BMJ. 2019; 366: l4363Crossref PubMed Scopus (116) Google Scholar As a consequence, international guidelines recommend treating patients with a first episode of unprovoked VTE “indefinitely.”3.Stevens S.M. Woller S.C. Kreuziger L.B. et al.Antithrombotic therapy for VTE disease: second update of the CHEST guideline and expert panel report.Chest. 2021; 160: e545-e608https://doi.org/10.1016/j.chest.2021.07.055Abstract Full Text Full Text PDF PubMed Scopus (124) Google Scholar, 4.Konstantinides S.V. Meyer G. Becattini C. et al.ESC scientific document group. 2019 ESC guidelines for the diagnosis and management of acute pulmonary embolism developed in collaboration with the European Respiratory Society (ERS).Eur Heart J. 2020; 41: 543-603Crossref PubMed Scopus (1428) Google Scholar However, such practice exposes patients to a substantial linear increase in the risk of bleeding (up to 10% per year risk of relevant bleeding during the first years of follow‐up, with a case fatality rate of 10% to 20% for major bleeding12.Lecumberri R. Alfonso A. Jiménez D. et al.RIETE investigators. Dynamics of case‐fatalilty rates of recurrent thromboembolism and major bleeding in patients treated for venous thromboembolism.Thromb Haemost. 2013; 110: 834-843Crossref PubMed Scopus (90) Google Scholar that could ultimately exceed the risk of recurrent VTE). Furthermore, proposing indefinite anticoagulation in all patients with unprovoked VTE exposes two thirds of patients to an unjustified risk of bleeding, because they would never have developed recurrent VTE if anticoagulation had been stopped. In this context, personalized medicine remains a major objective to propose the most effective and the least harmful treatment for an individual patient. In addition to new treatments, the discovery of more accurate, discriminant, and time‐dependent biomarkers, based on a variety of “omics” and enhanced mathematical models, is a key but not sufficient issue. Indeed, guidelines of anticoagulant management after unprovoked VTE recommend only a binary choice: either stopping treatment at 3 months, or extending it indefinitely.3.Stevens S.M. Woller S.C. Kreuziger L.B. et al.Antithrombotic therapy for VTE disease: second update of the CHEST guideline and expert panel report.Chest. 2021; 160: e545-e608https://doi.org/10.1016/j.chest.2021.07.055Abstract Full Text Full Text PDF PubMed Scopus (124) Google Scholar, 4.Konstantinides S.V. Meyer G. Becattini C. et al.ESC scientific document group. 2019 ESC guidelines for the diagnosis and management of acute pulmonary embolism developed in collaboration with the European Respiratory Society (ERS).Eur Heart J. 2020; 41: 543-603Crossref PubMed Scopus (1428) Google Scholar However, from the patient’s perspective, these two options might induce anxiety, either due to the fear of having a recurrence after stopping treatment, or fear of bleeding if an anticoagulant is continued. At 3 months of treatment, about 30% of patients have symptoms of post‐traumatic stress syndrome and often prefer to prolong treatment.6.Haxaire C. Tromeur C. Couturaud F. Leroyer C. A qualitative study to appraise patients and family members perceptions, knowledge, and attitudes towards venous thromboembolism risk.PLoS One. 2015; 10Crossref Scopus (8) Google Scholar, 7.Mahé I. Chidiac J. Pinson M. et al.Patients experience of living with cancer associated thrombosis in France (Le PELICAN).Thromb Res. 2020; 194: 66-71Abstract Full Text Full Text PDF PubMed Scopus (10) Google Scholar, 8.Klok F.A. Cohn D.M. Middeldorp S. et al.Quality of life after pulmonary embolism: validation of the PEmb‐QoL questionnaire.J Thromb Haemost. 2010; 8: 523-532Abstract Full Text Full Text PDF PubMed Scopus (73) Google Scholar, 9.Hunter R. Noble S. Lewis S. Bennett P. Long‐term psychosocial impact of venous thromboembolism: a qualitative study in the community.BMJ Open. 2019; 9Crossref Scopus (41) Google Scholar Furthermore, perceptions and preferences are likely to change over time with the perception of the treatment as less convenient. In real‐life studies, only 20% of patients with an indication for indefinite anticoagulation remain on anticoagulant therapy at 1 year of follow‐up.13.Ageno W. Samperiz A. Caballero R. et al.RIETE investigators. Duration of anticoagulation after venous thromboembolism in real world clinical practice.Thromb Res. 2015; 135: 666-672Abstract Full Text Full Text PDF PubMed Scopus (62) Google Scholar Alternatives “to stop or extend indefinitely” management should be elaborated with patients to increase adherence, flexibility, and acceptability of the therapeutic management and follow‐up modalities over time. Although guidelines recommend integrating patients’ preference during the decision‐making process, patients’ preference regarding treatment options are currently poorly defined and rarely taken in account. To date, there are no determined specific items or dedicated scales to evaluate patients’ perception on the risk of recurrent VTE or bleeding. In addition, some important socio‐economic aspects and health‐care system specificities are also not considered. Specific tools designed to facilitate shared decision‐making on the optimal management of unprovoked VTE beyond 3 months are currently unavailable. In other words, patient‐centered medicine represents a major objective given the widespread impact of VTE disease. Such an approach is urgently needed, for patients eligible for extended treatment but also for patients with cancer‐associated VTE for whom the intensity of the “major” outcomes (death, recurrent VTE, bleeding) and that of patients’ perspectives are compounded. In this issue of Journal of Thrombosis and Haemostasis, two major works address and highlight the issue of the optimal outcomes that should be evaluated in clinical trials, not only to improve the prognosis of VTE in regard to physiological outcomes, but also regarding patients’ perspectives. In the study of Tobias Tritschler et al., as the first step in developing a core outcome set (COS) for VTE treatment studies, they conducted a scoping review to generate an inclusive list of unique outcomes that have been reported in VTE treatment studies, and classified them in terms of domains, which are groups of closely related outcome measures.14.Tritschler T, Cusano E, Langlois N, et al. Identification of outcomes in clinical studies of interventions for venous thromboembolism in non‐pregnant adults: a scoping review. J Thromb Haemost. 2022;20:2313‐2322. doi:10.1111/jth.15787.Google Scholar Among 240 publications reporting on 165 studies that evaluated nine categories of current pharmacological and nonpharmacological treatments for VTE, they identified 205 unique outcomes that were grouped into 48 outcome domains. Not surprisingly, recurrent VTE (61% of studies), major bleeding (53%), and death (43%) were the most frequently reported outcomes, whereas life impacts on individuals with VTE (10%) or impacts on society in terms of resource use and costs of VTE treatment (<10%) were less often studied. This first approach constitutes a first step to elaborate COS for future VTE treatment studies and to extent the relevancy of clinical trial results to physicians (i.e., not only physicians specialized in vascular diseases), patients, and different stakeholders. In the second study performed by Leanne Genge et al., part of a larger initiative to develop COS for VTE, a scoping review of published qualitative studies aiming to understand the physical, psychological, and emotional impact of VTE as reflected from patients’ perspectives was conducted.15.Genge L, Krala A, Tritschler T et al. Evaluation of patients' experience and related qualitative outcomes in venous thromboembolism: a scoping review. J Thromb Haemost 2022;20:2323‐2341. doi:10.1111/jth.15788.Google Scholar Among 4944 citations, they included 28 studies, performed across 13 countries. Seven major themes were identified. The first theme, “acute impacts: an unforeseen blow,” describes the initial shock experienced by patients, which evolved into “sustained psychological distress” as participants had time to process the severity of this disease. “Life is changed” describes the complex ways in which VTE disrupted patients’ daily routines and planned life trajectory. “Challenges of thrombosis management” describes the burden of anticoagulation, which is recognized as a necessary inconvenience. Patients desire to understand the cause of VTE and make efforts to cope with and take control over disease in the “balancing coping and control” theme. “Negative experience with the medical system” describes the overall unpleasant journey through diagnosis and management of VTE, and the final theme, VTE in the “context of other conditions,” explores how an underlying provoking factor may impact the experience of VTE. These findings are original as they focused mostly on the socio‐anthropological analysis of the patients’ perspective, going beyond well‐described psychological and even psychiatric complications. Although not taking into account potential changes in patients’ perceptions over long‐term follow‐up (the time dependence of psychological and social markers is an important issue), the results of this study set up outcomes that could be used to develop a comprehensive COS for VTE treatment studies. In conclusion, a rising awareness is emerging in the scientific and medical community specialized in VTE that social sciences and humanities are a key component of patient care and that patient‐centered medicine represents a major issue, in complement to personalized medicine, to improve the overall impact of VTE. The two articles published in this issue of Journal of Thrombosis and Haemostasis provide a preliminary foundation to structure future interviews and priority settings with multiple stakeholders to create a COS for VTE treatment studies. Further steps will consist of the development of shared decision‐making models, as these models respond not only to the ethical and social trend of a health democracy, but also to the very practical imperative of increasing adherence and acceptability to treatment in the context of chronic disease. Dr. Couturaud had full access to all the data in the study and takes responsibility for the integrity of the editorial content. Manuscript concept and design: F. Couturaud. Analysis and interpretation of data: all. Drafting of the manuscript: all. Critical revision of the manuscript for important intellectual content: all. Final approval of the manuscript: all. Administrative, technical, or material support: all. All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Dr. Couturaud reports having received research grant support from Bayer and Bristol‐Myers Squibb/Pfizer and fees for board memberships or symposia from Bayer, Bristol‐Myers Squibb/Pfizer, Sanofi, Leopharma, and Astra Zeneca and having received travel support from Bayer, Bristol‐Myers Squibb/Pfizer, and Leo Pharma. Dr. Tromeur declares she has no conflicts of interest related to this research. Dr. Leroyer reports having received research grant support from Pfizer and fees for board memberships or symposia from Bayer, GSK, and Astra Zeneca. No other potential conflict of interest relevant to this article was reported.