What we still don't know about vascularized composite allotransplantation (VCA) outcomes and quality of life measurements.

Vascularized composite allotransplants (VCA) are the only organ transplants purported to be conducted principally to improve quality of life (QOL), rather than to extend or save life - hence they are described as "life-enhancing" (or "life-rescuing"). This is in contrast to "life-extending" solid organ transplantation (SOT). Yet despite more than 20 years of VCA practice (1997-present), little is known about the actual "life-enhancing" impact(s) of VCA on the patient or their families. This article presents an overview of the state of the VCA field and what we still don't know about VCA outcomes, specifically focussing on face and hand transplants as both visible, emotional, and communicative organs. The current measurement of QOL in VCA is insufficient, both conceptually and analytically. It is also, critically, conducted without reference to patient-reported outcomes, or the experiences of family and carers. Drawing on published research in VCA and SOT, as well as preliminary, anecdotal VCA patient interview research, this paper highlights how and why the QOL practices in the field of VCA are not fit for purpose and proposes new ways of analysing QOL. In conclusion, it outlines what needs to happen for the VCA field to move forward positively, and with patients and their families more central to VCA practice and research.

Poverty, depression, and anxiety: Causal evidence and mechanisms.

Why are people who live in poverty disproportionately affected by mental illness? We review the interdisciplinary evidence of the bidirectional causal relationship between poverty and common mental illnesses-depression and anxiety-and the underlying mechanisms. Research shows that mental illness reduces employment and therefore income, and that psychological interventions generate economic gains. Similarly, negative economic shocks cause mental illness, and antipoverty programs such as cash transfers improve mental health. A crucial step toward the design of effective policies is to better understand the mechanisms underlying these causal effects.

Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate at Age 8+ Years.

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.

The Contribution of a Charitable Organization to Regional Cleft Lip and Palate Services in England and Scotland.

BACKGROUND: From diagnosis through to adulthood, a cleft lip and/or palate (CL/P) poses a number of challenges for those affected. Alongside the care provided by clinical teams, complementary information and support is offered by charitable organizations. In 2011, the Cleft Lip and Palate Association received funding to implement a new regional service across England and Scotland, with the aim of increasing support at a local level. The Centre for Appearance Research at the University of the West of England were commissioned to conduct an independent evaluation of the service over 7 years. METHODS: A pragmatic, mixed-methods approach was utilized to assess the impact of the service from the perspective of charity volunteers; children, young people, and adults with CL/P; caregivers; and clinicians. Feedback forms were distributed to stakeholders at a variety of events, and qualitative feedback was collected via focus groups and an online survey. RESULTS: The majority of participants indicated they had gained access to a local support network, felt more able to cope with CL/P-related challenges, and felt more confident in themselves. Qualitative investigation provided further support for these findings and highlighted additional benefits of the regional service for clinical teams. CONCLUSIONS: The evaluation provides encouraging evidence toward the contribution of a relatively small charitable organization in the context of cleft care. The importance of a pragmatic approach to community-based evaluation and the benefits of collaborative working between researchers and the charitable sector were also highlighted.

Teachers' Perspectives on the Impact of Cleft Lip and/or Palate During the School Years.

BACKGROUND: Cleft lip and/or palate (CL/P) poses many challenges for those affected throughout the school years, with recent studies pointing to a trend in poor educational outcomes. Previous research has highlighted the important role that teachers play in supporting young people with chronic health conditions yet studies in the field of CL/P suggest that teachers may lack knowledge of the condition, and underestimate pupils' academic ability. Qualitative investigation of the impact of CL/P from the teacher's perspective may provide additional insight as well as potential suggestions for improving the school experience for affected pupils. METHODS: Twenty UK preschool, primary, and secondary school teachers with experience of teaching pupils with CL/P completed an open-ended survey, eliciting qualitative data. RESULTS: Qualitative content analysis was performed. Data were presented under 5 key headings: Knowledge of CL/P and its effects, perceived impact of CL/P on education, teachers' training needs, delivery of training, and impact of CL/P on teachers. Teachers were able to identify a number of potential social, emotional, and treatment-related challenges within the school setting, yet did not believe that CL/P would have a long-term impact on pupils' educational achievement. Participating teachers reported that cleft-specific training and access to relevant resources would be highly beneficial. CONCLUSIONS: Acting as a platform for future research, this exploratory study provides insight into the challenges faced by teachers and offers suggestions for how to improve teachers' understanding of CL/P, and their confidence in dealing with cleft-related issues.

Young Person and Parent Perspectives on the Impact of Cleft Lip and/or Palate Within an Educational Setting.

BACKGROUND: During the school years, a cleft of the lip and/or palate (CL/P) may pose a risk to educational achievement. To further understand this multifaceted association, and to offer suggestions as to how young people's educational experiences might be improved, qualitative investigation is warranted. DESIGN: Semi-structured telephone interviews were conducted with young people born with CL/P (n = 10; aged 10-16 years) and their parents (n = 10). The resulting data were subjected to inductive thematic analysis. RESULTS: Negative social interactions, cleft-related treatment, the presence of an additional condition, and a lack of appropriate support from teachers was found to influence young people's educational experience. Methods for promoting diversity, support from clinical teams, facilitation of positive school transitions, implementation of training for teachers, and a holistic approach to the measurement of "success" were suggested by participants as potential ways of improving this experience. CONCLUSIONS: The findings of this study point to a need for a range of school-focused interventions, as well as the inclusion of a number of potentially impactful variables within future quantitative research.

The Hypomania Checklist (HCL) - systematic review of its properties to screen for bipolar disorders.

OBJECTIVE: Bipolar disorders (BDs) are often not recognised with potentially drastic consequences for the individuals and their families. In clinical practice self-reports can be used to screen to enhance recognition. We therefore present a systematic review of the screening properties for the Hypomania Checklist (HCL-32). METHODS: A systematic literature search was conducted to identify all relevant studies looking at the screening properties of the HCL-32 in adults. RESULTS: Out of 196 papers 21 papers reported data on 22 independent samples. We narratively reviewed these studies. Weighted estimated Sensitivity was 80% regardless of whether a BD diagnosis was compared to unipolar depression or any other non-bipolar diagnosis. Specificity indicated that the HCL-32 was better when comparing BD to unipolar depression (65.3%) than to any other diagnostic category (57.3%). Fewer studies provided estimates for predictive powers, leading to less reliable overall estimates for these indicators. CONCLUSIONS: Despite some limitations, using the HCL-32 as a first screening in patients seeking help for depression can be recommended, but should never be used on its own for diagnosing. Future research should examine whether screening properties can be improved by developing an algorithm incorporating the negative consequences reported for different areas in the HCL-32.