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. 2025 May 23:9:a26007707.
doi: 10.1055/a-2600-7707. eCollection 2025.

First Experiences of Patients and Healthcare Professionals with Routine Use of Patient-Reported Outcome Measures for Venous Thromboembolism

Cindy M M de Jong  1 , Sophie N M Ter Haar  1 , Willem Jan W Bos  2   3 , Paul L den Exter  1 , Menno V Huisman  1 , Marlon H C Kosterink  4 , Thijs E van Mens  1 , Frederikus A Klok  1
Affiliations

First Experiences of Patients and Healthcare Professionals with Routine Use of Patient-Reported Outcome Measures for Venous Thromboembolism

Cindy M M de Jong et al. TH Open. .

Abstract

Background: Venous thromboembolism (VTE) can considerably limit patients' functioning and quality of life. Using patient-reported outcome measures (PROMs), the full impact of VTE on individual patients can be captured.

Methods: To evaluate the experiences of patients and healthcare professionals with the routine use of PROMs for VTE patients visiting the outpatient clinic, a mixed-methods study was performed at Leiden University Medical Center, the Netherlands. VTE PROMs were incorporated into routine care since March 2023, through a digital application sending patients invitations to complete PROMs. Quantitative and qualitative data were obtained from semi-structured interviews with patients and involved healthcare professionals. The NoMAD (normalization measure development) questionnaire was used to assess the implementation process from the professionals' perspective. Patients aged ≥18 years who experienced VTE and completed PROMs at two follow-up time points during ≥3 months follow-up and VTE patients who did not complete PROMs at both time points were asked to participate.

Results: Eight patients (five completed PROMs; three did not) and four professionals were interviewed. Both patients and professionals experienced the use of PROMs as neutral to predominantly positive (lower limit 3 on a scale of 1-5). All professionals valued the effects of PROMs on their work. Most patients felt the questionnaires contained too many questions. Suggestions to improve the completion rate, accessibility, PROMs content, and the digital tool were shared.

Conclusion: PROMs were believed to provide additional value during preparation for the appointment and during the consultation. The first experiences of patients and professionals, tending toward positive, can be used to improve PROMs application and support implementation in routine thrombosis care.

Keywords: implementation science; patient outcome assessment; patient-centered care; patient-reported outcome measures; venous thromboembolism.

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Conflict of interest statement

Conflict of Interest P.L.D.E. reports consulting fees from AstraZeneca and Amgen, all paid to the institution. F.A.K. reports grants or contracts from Bayer, BMS, BSCI, MSD, Leo Pharma, Actelion, VarmX, the Netherlands Organisation for Health Research and Development, the Dutch Thrombosis Association, the Dutch Heart Foundation, and the Horizon Europe Program, all unrelated to this work and paid to the institution.

Figures

Fig. 1
Fig. 1
PROMs dashboard in the electronic medical records. Example of the dashboard in the electronic medical records (in the Dutch language), showing the summary of PROM results per questionnaire (above in the figure) along with a graphical display (below in the figure). The answers to each of the questions of the completed questionnaires can also be reviewed in the dashboard. Note: in our center, the PROMIS short form “Physical Function” (left in the figure) and short form “Ability to Participate in Social Roles and Activities” (right in the figure) were implemented, which contain additional questions about physical health and social activities and roles compared to the PROMIS short form “Global Health” to delve deeper into these domains. PROMs: patient-reported outcome measures.
Fig. 2
Fig. 2
Frequency distribution of responses to the NoMAD questionnaire assessing the implementation process from the healthcare professional's perspective. The bars show the percentages of healthcare professionals reporting “strongly disagree”, “disagree”, “neutral”, “agree”, or “strongly agree” to each of the questions. Constructs: questions 1 to 4: coherence, questions 5 to 8: cognitive participation, questions 9 to 15: collective action, and questions 16 to 20: reflexive monitoring. NoMAD: normalization measure development, PROMs: patient-reported outcome measures.
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