How pro's can contribute to what matters most to patients with orofacial clefts

An orofacial cleft (OC) is a congenital cleft that may affect the lip, alveolus, hard and soft palate. An OC impacts the individuals' appearance, psychosocial well-being and causes functional problems including feeding, dentition, growth of jaws, hearing and speech. The treatment of an orofacial cleft usually reaches from birth until 22 years of age or later. To understand and listen in an objective manner, OC specific Patient reported Outcome (PRO) and experience (PRE) measures are imperative. In patients with OCs many shared decision making moments exist from birth until adulthood. The aim is to understand what knowledge exists on PROs and PREs in patients with OCs, to formulate challenges to improve care to OC patients and how research on OCs needs to adapt. PROs and PREs need to be tailored to the individual with an OC. A framework with specific OC key domains including appearance, facial function and Health related Quality of Life exists. The current framework does not include the social network around the OC patients yet. However attention should be put on including family and community support into the framework. Also at an individual level more attention should be paid to enhancing experiences compared to impeding experiences. To create a better understanding traditional indicators and outcomes are combined with PROMs in a structured way. Challenges were identified that seek to improve our complete set of (PRO and PRE) instruments to provide better care to the individual with an OC and provide a voice so that good shared decision making is enabled. Thereby the individual with an OC is further empowered.