Development of an international standard set of outcome measures for patients with venous thromboembolism: an International Consortium for Health Outcomes Measurement consensus recommendation

Gwozdz, Adam; Jong, Cindy M.M. de; Fialho, Luz Sousa; Likitabhorn, Theerawich; Sossi, F; Jaber, P Blancarte; Højen, Anette Arbjerg; Arcelus, Juan I.; Auger, William R.; Ay, Cihan; Gazzana, Marcelo Basso; Bayley, Julie; Bertoletti, Laurent; Cate‐Hoek, Arina J. ten; Cohen, Alexander T.; Connors, Jean M.; Galanaud, Jean‐Philippe; Labropoulos, Nicos; Langlois, Nicole; Meissner, Mark H.; Noble, Simon; Nossent, Esther J.; Lovatón, Paula Ponce de León; Robert‐Ebadi, Helia; Rosovsky, Rachel; Smolenaars, Noa; Toshner, Mark; Tromeur, Cécile; Wang, Kang-Ling; Westerlund, Eli; Wit, Kerstin de; Black, Stephen; Klok, Frederikus A.

doi:10.1016/s2352-3026(22)00215-0

Cited by 25 publications

(10 citation statements)

References 42 publications

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“…76 Recently, a standardized set of outcome measures for patients with VTE has been developed, with outcomes and outcome measures selected by international patient representatives and VTE experts through a modified Delphi process. 18 This consensus recommendation includes the outcomes that are deemed most important to patients with VTE to measure during follow-up after the VTE diagnosis. One of the core outcomes considered important is functional limitations, which is recommended to be measured by the PVFS scale.…”

Section: Clinical Applicationmentioning

confidence: 99%

“…15 Integrating such an instrument in VTE care fits well with the increasing recognition of patient-centered outcome measures in clinical practice and the shift toward value-based healthcare. [16][17][18] Since it is crucial to gain a better understanding of patients' perspectives and the impact of VTE, there is also the prevailing concept that clinical trials should evaluate outcomes that are most important to patients. Thus far, trials in VTE have focused most frequently (almost exclusively) on objective binary primary outcomes such as bleeding, recurrent VTE, and mortality.…”

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confidence: 99%

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The Post–Venous Thromboembolism Functional Status Scale: From Call to Action to Application in Research, Extension to COVID-19 Patients, and Its Use in Clinical Practice

Jong

Boon

et al. 2023

Semin Thromb Hemost

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A broad spectrum of long-term sequelae may be present in venous thromboembolism (VTE) survivors, affecting their quality of life and functioning. To monitor recovery and improve the prognosis of patients with persistent functional limitations, the development of a new outcome measure that could better capture the consequences of VTE was an unmet need. Starting as a call to action, the Post-VTE Functional Status (PVFS) scale was developed to meet this need. The PVFS scale is an easy-to-use clinical tool to measure and quantify functional outcomes after VTE by focusing on key aspects of daily life. As the scale was considered useful in coronavirus disease 2019 (COVID-19) patients as well, the Post-COVID-19 Functional Status (PCFS) scale was introduced early in the pandemic after slight adaptation. The scale has been well incorporated into both the VTE and COVID-19 research communities, contributing to the shift of focus toward patient-relevant functional outcomes. Psychometric properties have been evaluated, mainly for the PCFS scale but recently also for the PVFS scale, including validation studies of translations, showing adequate validity and reliability. In addition to serving as outcome measure in studies, guidelines and position papers recommend using the PVFS and PCFS scale in clinical practice. As broad use of the PVFS and PCFS scale in clinical practice is valuable to capture what matters most to patients, widespread implementation is a crucial next step. In this review, we discuss the development of the PVFS scale and introduction in VTE and COVID-19 care, the incorporation of the scale in research, and its application in clinical practice.

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Section: Clinical Applicationmentioning

confidence: 99%

mentioning

confidence: 99%

The Post–Venous Thromboembolism Functional Status Scale: From Call to Action to Application in Research, Extension to COVID-19 Patients, and Its Use in Clinical Practice

Jong

Boon

et al. 2023

Semin Thromb Hemost

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“…A recent paper of the European Society of Cardiology and European Respiratory Society, however, underlined the importance of measuring the long-term impact of pulmonary embolisms, and the need to use patient-reported outcomes for this purpose [ 30 ]. Moreover, an initiative to support the improvement of pulmonary embolism care has been undertaken by the International Consortium for Health Outcome Measurement with the development of a standard set of patient-centered venous thromboembolism outcomes [ 31 , 32 ].…”

Section: Consequences Of Pulmonary Embolismmentioning

confidence: 99%

Long-Term Management of Pulmonary Embolism: A Review of Consequences, Treatment, and Rehabilitation

Højen

Nielsen

Overvad

et al. 2022

JCM

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The concept of pulmonary embolism is evolving. Recent and emerging evidence on the treatment of specific patient populations, its secondary prevention, long-term complications, and the unmet need for rehabilitation has the potential to change clinical practice for the benefit of the patients. This review discusses the recent evidence from clinical trials, observational studies, and guidelines focusing on anticoagulation treatment, rehabilitation, emotional stress, quality of life, and the associated outcomes for patients with pulmonary embolism. Guidelines suggest that the type and duration of treatment with anticoagulation should be based on prevalent risk factors. Recent studies demonstrate that an anticoagulant treatment that is longer than two years may be effective and safe for some patients. The evidence for extended treatment in cancer patients is limited. Careful consideration is particularly necessary for pulmonary embolisms in pregnancy, cancer, and at the end of life. The rehabilitation and prevention of unnecessary deconditioning, emotional distress, and a reduced quality of life is an important, but currently they are unmet priorities for many patients with a pulmonary embolism. Future research could demonstrate optimal anticoagulant therapy durations, follow-ups, and rehabilitation, and effective patient-centered decision making at the end of life. A patient preferences and shared decision making should be incorporated in their routine care when weighing the benefits and risks with primary treatment and secondary prevention.

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“…Previous statements highlight that the chronic complications actually experienced following acute PE go well beyond the implications of clinically measured outcomes such as RV dysfunction and pulmonary hypertension [ 4 , 9 , 10 ]. Therefore, valuable information concerning patients’ well-being would be lost if information acquisition is channeled only through the narrow scope of clinical and paraclinical evaluations [ 11 ]. Direct formal inquiry of patients’ experiences through adequately validated patient-reported outcome (PRO) measures also confers the advantage of negating interobserver variability and is, thus, potentially more reliable than when such experiences are informally inquired, interpreted, and reported by third parties [ 12 ].…”

Section: Introductionmentioning

confidence: 99%

“…Pulmonary embolism quality of life (PEmb-QoL) questionnaire is the first and currently the only disease-specific PRO instrument for patients with a history of PE. The questionnaire was developed in Dutch, cross-culturally validated in several other languages, and is part of the recently developed core set of outcome measures for patients with PE [ 11 , [15] , [16] , [17] , [18] , [19] , [20] ]. Our study aimed to prepare the first Persian-translation PEmb-QoL, provide an ad hoc evaluation of its psychometric properties, and adjust its structure based on a Persian-speaking PE patient population in Iran.…”

Section: Introductionmentioning

confidence: 99%

Cross-cultural validity of the Pulmonary Embolism Quality of Life questionnaire in the quality of life survey after pulmonary embolism: A Persian-speaking cohort

Mehdizadeh¹,

Salehi²,

Moosavi³

et al. 2023

Research and Practice in Thrombosis and Haemostasis

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Development of an international standard set of outcome measures for patients with venous thromboembolism: an International Consortium for Health Outcomes Measurement consensus recommendation

Cited by 25 publications

References 42 publications

The Post–Venous Thromboembolism Functional Status Scale: From Call to Action to Application in Research, Extension to COVID-19 Patients, and Its Use in Clinical Practice

The Post–Venous Thromboembolism Functional Status Scale: From Call to Action to Application in Research, Extension to COVID-19 Patients, and Its Use in Clinical Practice

Long-Term Management of Pulmonary Embolism: A Review of Consequences, Treatment, and Rehabilitation

Cross-cultural validity of the Pulmonary Embolism Quality of Life questionnaire in the quality of life survey after pulmonary embolism: A Persian-speaking cohort

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