Outcome measurement instruments for peripheral vascular malformations and an assessment of the measurement properties: a systematic review

Sophie E. R. Horbach, Amber P. M. Rongen, Roy G. Elbers, Chantal M. A. M. van der Horst, Cecilia A. C. Prinsen, Phyllis I. Spuls, Collaborators OVAMA consensus group

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Abstract

Purpose: The Outcome measures for vascular malformation (OVAMA) group reached consensus on the core outcome domains for the core outcome set (COS) for peripheral vascular malformations (venous, lymphatic and arteriovenous malformations). However, it is unclear which instruments should be used to measure these domains. Therefore, our aims were to identify all outcome measurement instruments available for vascular malformations, and to evaluate their measurement properties. Methods: With the first literature search, we identified outcomes and instruments previously used in prospective studies on vascular malformations. A second search yielded studies on measurement properties of patient- and physician-reported instruments that were either developed for vascular malformations, or used in prospective studies. If the latter instruments were not specifically validated for vascular malformations, we performed a third search for studies on measurement properties in clinically similar diseases (vascular or lymphatic diseases and benign tumors). We assessed the methodological quality of these studies following the Consensus-based Standards for the selection of health Measurement Instruments methodology, and evaluated the quality of the measurement properties. Results: The first search yielded 27 studies, none using disease-specific instruments. The second and third search included 22 development and/or validation studies, concerning six instruments. Only the Lymphatic Malformation Function Instrument was developed specifically for vascular malformations. Other instruments were generic QoL instruments developed and/or partly validated for clinically similar diseases. Conclusions: Additional research on measurement properties is needed to assess which instruments may be included in the COS. This review informs the instrument selection and/or the development of new instruments. Systematic review registration: PROSPERO, 42017056242.
Original languageEnglish
Pages (from-to)1-17
JournalQuality of Life Research
Volume29
Issue number1
DOIs
Publication statusPublished - 1 Jan 2020

Cite this

Horbach, S. E. R., Rongen, A. P. M., Elbers, R. G., van der Horst, C. M. A. M., Prinsen, C. A. C., Spuls, P. I., & Collaborators OVAMA consensus group (2020). Outcome measurement instruments for peripheral vascular malformations and an assessment of the measurement properties: a systematic review. Quality of Life Research, 29(1), 1-17. https://doi.org/10.1007/s11136-019-02301-x