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Achieving consensus in the measurement of psychological adjustment to cleft lip and/or palate at age 8 years+

Stock, Nicola Marie; Hammond, Vanessa; Hearst, Daniela; Owen, Tina; Edwards, Zoe; Ridley, Matthew; Rumsey, Nichola

Achieving consensus in the measurement of psychological adjustment to cleft lip and/or palate at age 8 years+ Thumbnail


Authors

Nicola Stock Nicola2.Stock@uwe.ac.uk
Occasional Associate Lecturer - CHSS - HSS

Vanessa Hammond

Daniela Hearst

Tina Owen

Zoe Edwards

Matthew Ridley



Abstract

Background: Consensus regarding optimal outcome measurement has been identified as one of the most important, yet most challenging developments for the future of cleft lip and/or palate (CL/P) services. In 2011, a process began to adopt a shared conceptual framework and to identify a set of core outcome measures for the comprehensive assessment of psychological adjustment. Objectives: The aim of the current article is to outline the collaborative process used to achieve consensus in the academic and clinical measurement of psychological adjustment to CL/P from the age of 8 years onward. Results: A conceptual framework and corresponding parent- and self-reported outcome measures for use at ages 8, 10, 12, 15, 18, 20, and 25 years have been agreed upon by clinicians, researchers, and patient and parent representatives. All measures have been evaluated according to their psychometric properties, clinical utility, ability to produce meaningful longitudinal data, and a range of pragmatic considerations. Conclusions: Although the collaborative process has been challenging and has required ongoing dedication from multiple stakeholders, consistency in data collection over time will allow for key research questions in CL/P to be addressed, both in the United Kingdom (UK) and internationally. The process has also demonstrated the clinical utility of the measures and the potential for the gradual integration of the measures into clinical practice. UK progress has sparked global interest, and the adaptation of the framework and its corresponding measures for worldwide use is now a prominent focus.

Citation

Stock, N. M., Hammond, V., Hearst, D., Owen, T., Edwards, Z., Ridley, M., & Rumsey, N. (2020). Achieving consensus in the measurement of psychological adjustment to cleft lip and/or palate at age 8 years+. Cleft Palate-Craniofacial Journal, 57(6), 746-752. https://doi.org/10.1177/1055665619898596

Journal Article Type Article
Acceptance Date Nov 8, 2019
Online Publication Date Jan 24, 2020
Publication Date Jun 1, 2020
Deposit Date Aug 25, 2020
Publicly Available Date Aug 26, 2020
Journal Cleft Palate-Craniofacial Journal
Print ISSN 1055-6656
Electronic ISSN 1545-1569
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 57
Issue 6
Pages 746-752
DOI https://doi.org/10.1177/1055665619898596
Keywords visible difference, cleft lip and palate, psychological wellbeing, outcome measurement; collaboration; adjustment
Public URL https://uwe-repository.worktribe.com/output/4448139

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