OVAMA: Outcome measures for vascular malformations

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Disease State: Vascular malformations

Background

Peripheral vascular malformations are congenital anomalies of the vascular or lymphatic system, often visible as a mass other in color and texture than normal skin. The lesions are classified according vessel type and flow speed. Distinguished are the high-flow arteriovenous malformations (AVM), the low-flow capillary (CM), venous (VM) and lymphatic malformations (LM), and combined lesions. Symptoms experienced by patients vary by type and localization, and include disfigurement, pain, bleeding, functional impairment, thrombotic complications and an overall poorer quality of life as compared to the general population. There is great heterogeneity in outcome reporting in the clinical research on peripheral vascular malformations. Without harmonization of outcome measures, treatments cannot be properly compared. This hampers the development of evidence-based treatment guidelines, which are urgently needed for these challenging congenital conditions.


Project Goal

The mission of the OVAMA project is to uniform outcome reporting in clinical research. The OVAMA project is in an advanced stage, having already successfully developed a core outcome set and a patient-reported outcome measure (the OVAMA questionnaire) to measure several patient-reported core outcome domains. More information can be found on www.ovama.org.


Project Leads

Max M. Lokhorst
Max M. Lokhorst
Merel L.E. Stor
Merel L.E. Stor
Sophie E.R. Horbach
Sophie E.R. Horbach
Chantal M.A.M. van der Horst
Chantal M.A.M. van der Horst
Phyllis Spuls
Phyllis Spuls
Francine Blei
Francine Blei
Carine J.M. van der Vleuten
Carine J.M. van der Vleuten
Ilona J. Frieden
Ilona J. Frieden
Gresham T. Richter
Gresham T. Richter
Swee T. Tan
Swee T. Tan
Tobian Muir
Tobian Muir
Laurence M. Boon
Laurence M. Boon

C3 Methods Partner

TBD

 

Contact

Max Lokhorst, m.m.lokhorst@amsterdamumc.nl

 

Publications:

  1. Horbach SER, Rongen APM, Elbers RG, van der Horst CMAM, Prinsen CAC, Spuls PI; Collaborators OVAMA consensus group. Outcome measurement instruments for peripheral vascular malformations and an assessment of the measurement properties: a systematic review. Qual Life Res. 2020 Jan;29(1):1-17. doi: 10.1007/s11136-019-02301-x. Epub 2019 Sep 23. PMID: 31549367; PMCID: PMC6962285.
  2. Horbach SER, van der Horst CMAM, Blei F, van der Vleuten CJM, Frieden IJ, Richter GT, Tan ST, Muir T, Penington AJ, Boon LM, Spuls PI; OVAMA Consensus Group. Development of an international core outcome set for peripheral vascular malformations: the OVAMA project. Br J Dermatol. 2018 Feb;178(2):473-481. doi: 10.1111/bjd.16029. Epub 2018 Jan 19. PMID: 28986976.
  3. Lokhorst MM, Horbach SER, van der Horst CMAM, Spuls PI; OVAMA Steering Group. Finalizing the international core domain set for peripheral vascular malformations: the OVAMA project. Br J Dermatol. 2019 Nov;181(5):1076-1078. doi: 10.1111/bjd.18043. Epub 2019 Jul 24. PMID: 31021456; PMCID: PMC6900166.
  4. Lokhorst MM, Horbach SER, Waner M, O TM, van der Vleuten CJM, Mokkink LB, van der Horst CMAM, Spuls PI. Responsiveness of quality-of-life measures in patients with peripheral vascular malformations: the OVAMA project. Br J Dermatol. 2020 Jun;182(6):1395-1403. doi: 10.1111/bjd.18619. Epub 2019 Dec 2. PMID: 31628861; PMCID: PMC7318211.
  5. Lokhorst MM, Horbach SER, Waner M, O TM, van der Vleuten CJM, Spuls PI, van der Horst CMAM. Responsiveness of quality of life measures in children with peripheral vascular malformations: The OVAMA project. JPRAS Open. 2020 Nov 30;27:70-79. doi: 10.1016/j.jpra.2020.11.013. PMID: 33364290; PMCID: PMC7753079.
  6. Lokhorst MM, Horbach SER, Young-Afat DA, Stor MLE, Haverman L, Spuls PI, van der Horst CMAM; OVAMA Steering Group. Development of a condition-specific patient-reported outcome measure for measuring symptoms and appearance in vascular malformations: the OVAMA questionnaire. Br J Dermatol. 2021 Oct;185(4):797-803. doi: 10.1111/bjd.20429. Epub 2021 Jun 14. PMID: 33937977; PMCID: PMC8518089.
  7. Stor MLE, Lokhorst MM, Horbach SER, Young-Afat DA, Kappen TM, van Hout NM, Spuls PI, van der Horst CMAM. Clinical characteristics associated with pain in patients with peripheral vascular malformations. J Vasc Surg. 2022 Mar;75(3):1054-1062.e1. doi: 10.1016/j.jvs.2021.08.101. Epub 2021 Oct 1. PMID: 34606955.

 

Updated on May 31, 2022