The challenge of assessing quality of life in craniofacial contexts

Rumsey, Nichola

Abstract

When asked about their motivation for delivering cleft care and optimising treatment outcomes, the majority of clinicians claim that their ultimate aim is to optimise the quality of life of their patients. Furthermore, ‘quality of life’ (QoL) is used as a basis for treatment decision-making and as a key indicator of patient outcomes. The potential advantages of capturing data on QoL are widely acknowledged. However, despite an explosion of interest and an associated increase in related publications and measures, debates continue to range about the meaningfulness of the data obtained. The challenges in assessing quality of life include the lack of a consensus definition and conceptual framework, conflicting views about the most appropriate focus within craniofacial care (e.g. ‘general’ QoL, health related quality of life, cleft specific QoL, oral health related quality of life), a lack of agreement about the key contributory factors and the plethora of measures currently in use. All of these combine to make a comprehensive and meaningful synthesis of current research - certainly one appropriate and useful in informing practice - impossible.
Despite these challenges, the potential benefits of eliciting information from patients about aspects of their QoL are many. This information has the potential to inform practice, underpin treatment decision-making and optimise outcomes. Current developments in the assessment of QoL in craniofacial care will be summarised and pragmatic recommendations made about evaluating the literature, collecting appropriate data and using these data appropriately.

• Presentation Conference Type: Keynote
• Conference Name: European Craniofacial Congress
• Start Date: Jun 24, 2015
• End Date: Jun 27, 2015
• Publication Date: Jun 1, 2015
• Peer Reviewed: Not Peer Reviewed
• Keywords: craniofacial, quality of life, appearance
• Public URL: https://uwe-repository.worktribe.com/output/833864
• Publisher URL: http://www.ecc2015.se/author-index
• Additional Information: Title of Conference or Conference Proceedings : European Craniofacial Congress