Cleft Team Clinicians' Perspectives on the Process of Patient Transition from Childhood to Adulthood in New Zealand.

Objective: This study sought to understand cleft team clinician experiences of transitioning patients from pediatric to adult cleft care services in New Zealand.

Design: The qualitative study conducted 4 interviews and 4 focus groups with Cleft Team clinicians either in person or over Zoom. Data were analyzed using inductive thematic analysis to identify themes.

Involving Experts by Experience in Craniofacial Research.

Many areas of health research increasingly involve end users of research (typically patients and their families/caregivers) in study design, management, and dissemination. Beyond recruiting patients as research participants, the shift is towards engaging patients, parents and caregivers as active partners on the research team, who are recognised and valued as 'experts-by-experience' (EbyE). Currently, involving EbyE is not routine in global craniofacial research.

Invited Review: "I've Just Seen a Face".

I've Just Seen a Face is a new resource produced by author Amy Mendillo and is designed for parents of children with cleft lip and/or palate to help them to navigate the first year of life. In this invited article, Kenny Ardouin provides an overview of the book, and offers perspective on the content contained within, including potential issues for professionals working with cleft to consider. The review ends with recommendations for likely beneficiaries of the book, as well as considerations for additional future versions of the book.

A Keynote Address: A Guide to Supporting Conference Speakers with Lived Experience of Cleft Lip and/or Palate.

Although the value of diversity within academia and society is increasingly recognised, the role of speakers with lived experience at cleft and craniofacial conferences remains inconsistent. This perspectives article shares reflection from three academics with lived experience of cleft discussing the value of including lived experience speakers routinely within conferences and outlining common challenges and barriers to the involvement of "experts-by-experience". Key considerations and recommendations are offered to help conference organisers and delegates to make the most of the lived experience perspective, while ensuring the conference experience is positive for lived experience speakers.

The Development, Deployment, and Evaluation of the CLEFT-Q Computerized Adaptive Test: A Multimethods Approach Contributing to Personalized, Person-Centered Health Assessments in Plastic Surgery.

Background: Routine use of patient-reported outcome measures (PROMs) and computerized adaptive tests (CATs) may improve care in a range of surgical conditions. However, most available CATs are neither condition-specific nor coproduced with patients and lack clinically relevant score interpretation. Recently, a PROM called the CLEFT-Q has been developed for use in the treatment of cleft lip or palate (CL/P), but the assessment burden may be limiting its uptake into clinical practice.

Long-term treatment outcomes from the perspective of a patient with unilateral cleft lip and palate.

The management of patients with orofacial cleft (OFC) often extends from diagnosis or birth well into adulthood and requires many different specialists within multidisciplinary teams (MDT). The aims of treatment are to restore form and function relating to hearing, speech, occlusion and facial aesthetics. People with OFCs that include the lip, alveolus and palate (cleft lip and palate (CLP)) require several different staged and coordinated surgical and non-surgical interventions, and the treatment pathway is associated with a heavy burden of care.

Factors Associated With Psychological Adjustment in Adults With Cleft Lip and/or Palate: Findings From a National Survey in the United Kingdom.

Objectives: Research has identified adults born with cleft lip and/or palate (CL/P) to be at risk of poorer psychological outcomes compared to the general population. This study investigated factors that may contribute to positive and negative adjustment in adults born with CL/P.

Design: A survey was designed and distributed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research CAR at the University of the West of England (UWE).

Expanding Support Services for Adults Born With Cleft Lip and/or Palate in the United Kingdom: An Exploratory Evaluation of the Cleft Lip and Palate Association Adult Services Programme.

Background: The largest group of people living with repaired cleft lip and/or palate (CL/P) are adults. Previous research has identified unmet treatment and psychosocial needs, yet few interventions exist. This article outlines 3 interventions developed by the Cleft Lip and Palate Association as part of its 3-year community-based Adult Services Programme; an Adults Conference, a series of panel discussions ("Cleft Talk") streamed in podcast/video format, and a Leaver's Pack of resources for adults wishing to return to cleft care.

Interpersonal Relationship Experiences in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom.

Objectives: Previous research has suggested that adults with a cleft lip and/or palate (CL/P) may find their familial, friend, collegial, and/or romantic relationships impacted by their condition. Building on this prior work, this study examined the self-reported interpersonal experiences of a national sample of adults born with CL/P.

Design: An online survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research.

Treatment Experiences in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom.

Objectives: Adults with cleft lip and/or palate (CL/P) may report dissatisfaction with aesthetic and/or functional outcomes and express desire for further treatment. Although medical intervention can improve quality of life, surgical procedures require complex decision-making and can invoke psychological distress. The aim of this study was to gain a better understanding of ongoing treatment-related support needs by examining self-reported treatment experiences of a sample of adults born with CL/P.

Physical Health in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom.

Objectives: Previous research in the field of cleft lip and/or palate (CL/P) has indicated a high prevalence of common health concerns, functional difficulties, and additional conditions known to affect long-term physical health, cognitive development, and psychological well-being. The aim of the present study was to examine the self-reported physical health of a national sample of adults born with CL/P.

Design: Drawing upon previous literature, an online, mixed-methods survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research at the University of the West of England.

Emotional Well-Being in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom.

Objectives: Previous research with adults born with cleft lip and/or palate (CL/P) has identified a range of concerns regarding mental health and quality of life, concluding that overall emotional functioning is poorer compared to the general population. The aim of the current study was to build on this previous work by investigating the self-reported emotional well-being of adults born with CL/P in the United Kingdom.

Design: An online, mixed methods survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research at the University of the West of England.