Abstract

BackgroundDisfigurement (visible difference) from wide-ranging congenital or acquired conditions, injuries, or treatments can negatively impact adolescents’ psychological well-being, education and health behaviours. Alongside medical interventions, appearance-specific cognitive behavioural and social skills training to manage stigma and appearance anxiety may improve psychosocial outcomes. YP Face IT (YPF), is a Web-based seven session self-help program plus booster quiz, utilising cognitive behavioural and social skills training for young people (YP) struggling with a visible difference. Co-designed by adolescents and psychologists, it includes interactive multimedia and automated reminders to complete sessions/homework. Adolescents access YPF via a health professional who determines its suitability and remotely monitors clients’ usage.ObjectiveTo establish the feasibility of evaluating YPF for 12-17 year olds self-reporting appearance-related distress and/or bullying associated with a visible difference.MethodsRandomized controlled trial with nested qualitative and economic study evaluating YPF compared with usual care (UC). Feasibility outcomes included: viability of recruiting via general practitioner (GP) practices (face to face and via patient databases) and charity advertisements; intervention acceptability and adherence; feasibility of study and data collection methods; and health professionals’ ability to monitor users’ online data for safeguarding issues. Primary psychosocial self-reported outcomes collected online at baseline, 13, 26, and 52 weeks were as follows: appearance satisfaction (Appearance Subscale from Mendleson et al’s (2001) Body Esteem Scale); social anxiety (La Greca’s (1999) Social Anxiety Scale for Adolescents). Secondary outcomes were; self-esteem; romantic concerns; perceived stigmatization; social skills and healthcare usage. Participants were randomised using remote Web-based allocation.ResultsThirteen charities advertised the study yielding 11 recruits, 13 primary care practices sent 687 invitations to patients on their databases with a known visible difference yielding 17 recruits (2.5% response rate), 4 recruits came from GP consultations. Recruitment was challenging, therefore four additional practices mass-mailed 3,306 generic invitations to all 12-17 year old patients yielding a further 15 participants (0.5% response rate). Forty-seven YP with a range of socioeconomic backgrounds and conditions were randomised (26% male, 91% white, mean age 14 years (SD 1.7)); 23 to YPF, 24 to UC). At 52 weeks, 16 (70%) in the intervention and 20 (83%) in UC groups completed assessments. There were no intervention-related adverse events; most found YPF acceptable with three withdrawing because they judged it was for higher-level concerns; 12 (52%) completed seven sessions. The study design was acceptable and feasible, with multiple recruitment strategies. Preliminary findings indicate no changes from baseline in outcome measures among the UC group and positive changes in appearance satisfaction and fear of negative evaluation among the YPF group when factoring in baseline scores and intervention adherence.ConclusionsYPF is novel, safe and potentially helpful. Its full psychosocial benefits should be evaluated in a large-scale RCT, which would be feasible with wide-ranging recruitment strategies.Trial RegistrationISRCTN registry ISRCTN40650639; http://www.isrctn.com/ISRCTN40650639

Highlights

  • BackgroundApproximately 1 in 44 individuals has a condition or injury that noticeably affects the appearance of their face, skin, or body shape [1]

  • Preliminary findings indicate no changes from baseline in outcome measures among the usual care (UC) group and positive changes in appearance satisfaction and fear of negative evaluation among the YP Face IT (YPF) group when factoring in baseline scores and intervention adherence

  • Its full psychosocial benefits should be evaluated in a large-scale randomized controlled trial (RCT), which would be feasible with wide-ranging recruitment strategies

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Summary

Introduction

BackgroundApproximately 1 in 44 individuals has a condition or injury that noticeably affects the appearance of their face, skin, or body shape [1]. Research shows commonalities in the experiences of young people (YP) with a variety of appearance-altering conditions [3]; 30% to 50% struggle with social stigma (eg, teasing, bullying, peer rejection, and unwanted attention from strangers [4]) and/or experience appearance-related distress [5] If not addressed, these experiences can lead to low self-esteem, social anxiety and avoidance [6,7], poor social and emotional development [8], reduced school performance [9], difficulties with romantic relationships [10], unemployment [11], depression [12], and self-harm and suicidality [13], a health, social, and economic burden to society. Adolescents access YPF via a health professional who determines its suitability and remotely monitors clients’ usage

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