During the ICTHIC webinar “Joint forces: the Patient & the Multi-disciplinary Team working together to improve outcomes in CAT,” Prof Klok gave a lecture on the work of the International Consortium for Health Outcomes Measures (ICHOM) Working Group for Venous Thromboembolism (VTE) (the ICHOM-VTE working group). The group aims to identify a minimum set of health outcomes relevant to patients. These standard sets will guide providers to improve their care in clinical practice.
Here, we summarize the key messages of his speech. You can watch Erik Klok’s speech in the video below, and you can watch the full webinar recording here.
When discussing outcomes and VTE care, especially VTE or cancer-associated thrombosis (CAT) studies, the primary outcomes are bleeding (because of anticoagulant treatments), recurrent VTE, and death.
These are important and strong outcomes that healthcare providers need to consider when deciding on a treatment, but they are not enough.
“In my view, they may not always be sufficient and, in many settings, it’s very difficult to choose between the risk of bleeding and the risk of recurrent VTE. It is a dilemma that cannot be solved by adding both into one combined outcome,” said Prof Klok. “A true net clinical benefit has far more to do with the quality of life and other things that cannot be captured by scoring the risk of bleeding, death, and recurrent VTE.”
Especially when considering the long-term impact of a disease, we need other outcome measures that reflect the quality of life, the most important factor for any treatments given to the patients. This is true for VTE in general, but even more for CAT.
During their journey with cancer, patients go through a series of events, such as medical interventions, treatments, good and bad news, a decline in the body or mental function, which greatly impact their life. Therefore, these factors need to be considered when optimizing cancer and CAT treatment and studies.
To recognize the importance of the patients’ perspectives in ensuring the high-quality, safety, and equity of treatments and studies, patient-reported outcome measures (PROMs) are increasingly used in the healthcare setting. PROMs are standardized questionnaires that collect information on health outcomes directly from patients, including symptoms, health-related quality of life, and functional status. The final aim is to capture the patient experience and integrate it in the hospital and the physician’s daily practice .
PROMs fall into two main categories: generic and condition-specific. Generic PROMs measure health concepts relevant to a wide range of patient groups, enabling aggregation and comparisons across varied conditions and settings. Condition-specific PROMs capture elements of health relevant to a particular patient group or condition. Both PROMs groups are important for understanding and improving patient care at multiple healthcare system levels .
ICHOM and the VTE-ICHOM project
In an attempt to integrate PROMs into the daily care of patients and as main outcomes of major trials, ICHOM (the International Consortium for Health Outcomes Measures), a nonprofit organization, has initiated efforts to develop standard sets of PROMs for various medical conditions .
ICHOM works with healthcare professionals, researchers, and patient representatives worldwide to define the outcomes that matter most to patients and encourages healthcare organizations to measure these outcomes to help improve their services. This, in turn, provides better results for the patients.
The VTE-ICHOM working group (Venous Thromboembolism Working Group), consisting of healthcare professionals and experts, wants to reach an agreement on the set of outcomes most important to patients with VTE and CAT and how to measure these outcomes in clinical practice.
The VTE-ICHOM project aims to develop a minimum standard set of PROMs for VTE that are relevant to the patients and that are currently not included in studies or publications.
The objective of such standard sets is to improve decision-making between providers and patients and facilitate quality comparison and quality improvement. The process starts with discussing the patient’s, the provider’s, and the physician’s perspective on what is important to them. Based on these perspectives, a set of potential outcomes that matters to patients and physicians is created. Finally, the minimum set of the most important outcomes is decided together with how to measure them. The final standard set is then published.
VTE-ICHOM team and output
The VTE-ICHOM team is formed by experts and patients from all continents (except for Australia), and it is chaired by Stephen Black from London and Erik Klok from The Netherlands. All the members have expertise in VTE, CAT, or patient outcomes, and they have regular meetings to define the most valid and optimal outcomes.
Every output is evidence-based: the group searches the literature for evidence on the relevant outcomes and how to measure them. The final outputs of the project are flyers with information, reference guides, and a scientific publication showing every step of the process and the evidence behind the final standard set of outcomes. Moreover, the scientific publication goes through open reviews from patients and healthcare professionals.
The VTE-ICHOM project promotes a shift from thinking from conventional outcomes (VTE, bleeding, death) to patient-relevant outcomes. The set of outcomes produced by the VTE-ICHOM project will standardize and improve care, allowing consistent monitoring of routine clinical practice and the quality of care and outcome comparison in a systematic and meaningful manner.
“I think this is the ultimate way of improving care and increasing our knowledge and, hopefully, in the end, improve our patients’ quality of life,” concluded Prof. Klok.
Watch Erik Klok’s speech
- Churruca K, Pomare C, Ellis LA, et al. Patient-reported outcome measures (PROMs): A review of generic and condition-specific measures and a discussion of trends and issues. Health Expect. 2021;24(4):1015-1024.