Domains and outcomes of the core outcome set of congenital melanocytic naevi for clinical practice and research (the OCOMEN project): part 2*

A. C. Fledderus*, S. G.M.A. Pasmans, A. Wolkerstorfer, W. Oei, H. C. Etchevers, M. S. van Kessel, C. M.A.M. van der Horst, P. I. Spuls

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Abstract

Background: Congenital melanocytic naevi (CMN) can have a great impact on patients’ lives owing to perceived stigmatization, and the risk of melanoma development and neurological complications. Development of a core outcome set (COS) for care and research in CMN will allow standard reporting of outcomes. This will enable comparison of outcomes, allowing professionals to offer advice about the best management options. In previous research, stakeholders (patients, parents and professionals) reached consensus on the core domains of the COS. To select the appropriate measurement instruments, the domains should be specified by outcomes. Objectives: To reach consensus on the specific core outcomes describing the core domains pertaining to clinical care and research in CMN. Methods: A list of provisional outcomes (obtained earlier) was critically reviewed by the Outcomes for COngenital MElanocytic Naevi (OCOMEN) research team and by relevant stakeholders through an online questionnaire, to refine this list and provide clear definitions for every outcome. When needed, discussion with individual participants was undertaken over the telephone or by email. During an online consensus meeting, stakeholders discussed the inclusion of potential outcomes. After the meeting, participants voted in two rounds for the inclusion of outcomes. Results: Forty-four stakeholders from 19 countries participated. Nine core outcomes were included in the COS relative to clinical care and 10 core outcomes for research. Conclusions: These core outcomes will enable standard reporting in future care and research of CMN. This study facilitates the next step of COS development: selecting the appropriate measurement instruments for every outcome.

Original languageEnglish
Pages (from-to)970-977
Number of pages8
JournalBritish Journal of Dermatology
Volume185
Issue number5
Early online date6 May 2021
DOIs
Publication statusPublished - Nov 2021

Bibliographical note

Funding Information:
This project was supported, in part, by a grant from the European Academy of Dermatology and Venereology to S.G.M.A.P., and by Stichting de Merel. H.C.E. was supported by funding from the Association Naevus Géant Congénital, Naevus 2000 France‐Europe and the Asociación Española de Nevus Gigante Congénito. Funding sources

Funding Information:
sources This project was supported, in part, by a grant from the European Academy of Dermatology and Venereology to S.G.M.A.P., and by Stichting de Merel. H.C.E. was supported by funding from the Association Naevus G?ant Cong?nital, Naevus 2000 France-Europe and the Asociaci?n Espa?ola de Nevus Gigante Cong?nito.We thank the stakeholders who contributed in this project include Avani Adhia (India); Leon van Adrichem (the Netherlands); Helene Aubert (Denmark); Jean Baptiste (USA); Sebastien Barbarot (France); Benjamin Bloom (Germany); Olivia Boccara (France); Wiatt Bowers (USA); Ingeborg Cappelen Lindheim (Norway); Anne Dekerk (Belgium); Remco van Doorn (the Netherlands); Alsaiyd Eman (Canada); Marlies de Graaf (the Netherlands); Lotte Haverman (the Netherlands); Susanne von der Heydt (Germany); Gabriella Hublova (Czech Republic); Isabelle James (France); Yasmin Khakoo (USA); Oren Lapid (the Netherlands); Quenito Lilliana (Kenia); Saskia Maas (the Netherlands); Ornella Masnari (Switzerland); Evangelia Parzali (Greece); Ester Prooij (the Netherlands); Giovanni Raciti (Italy); Ngatse Mardoche Raden (Congo); Linda De Raeve (Belgium); Miguel Reyes-M?gica (USA); Sieglinde McKeown (South Africa); Rosalba Semeraro (Italy); Alejandra Tom?s (Spain); Michel Willemse (the Netherlands); and Christos Zouboulis (Germany). Furthermore, we would like to thank Jan Kottner for reviewing the study protocol; Lotte Haverman for reviewing the provisional outcomes of the ?quality of life? domain; and Max Lokhorst for his methodological support. This project is part of the European Reference Network SKIN thematic group ?Cutaneous Mosaic Disorders Naevi and Naevoid skin disorders, complex vascular malformations and vascular tumors (https://ern-skin.eu/thematic-groups3/thematic-group-cutaneous-mosaic-disorders-naevi-naevoid-skin-disorders-complex-vascular-malformations-and-vascular-tumors/).

Publisher Copyright:
© 2021 The Authors. British Journal of Dermatology published by John Wiley & Sons Ltd on behalf of British Association of Dermatologists

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