Study design: This study is a systematic review.
Introduction: Congenital upper limb anomalies (CULAs) are often associated with psychosocial difficulties including negative body image, low self-esteem, and withdrawal from social activities.
Purpose of the study: The purpose of the study was to identify, describe, and evaluate all published psychosocial assessment tools used in the assessment and management of CULAs, to direct the use of these tools in clinical practice, and to identify areas requiring development.
Methods: A systematic search of Medline, EMBASE, Pubmed, and PsychInfo databases was performed. In total, 23 studies were included for analysis. Data extracted included study and population characteristics, psychosocial measures utilized, psychosocial outcomes reported, and the reliability and validity of measures.
Results: Seventeen patient-reported measures were identified. The most commonly used tool was a Likert scale (n =7) with satisfaction with appearance and function, the most commonly evaluated outcome (n = 18). Other evaluated domains included quality of life or psychosocial functioning (n = 9), self-image (n = 2), and psychological well-being (n = 5).
Discussion and conclusions: There is no well-established, validated assessment tool in regular use to effectively address psychosocial outcomes for children with CULAs. Although the majority of children born with a CULA appear to adjust well, this is by no means the case for all children. There is a need for routine psychosocial evaluation preoperatively and postoperatively with long-term follow-up data to help direct patient-orientated management. A clear understanding of these, and how to measure them, is needed to help for a patient-centred, multidisciplinary, evidence-driven approach to CULA management.
Keywords: Congenital upper limb anomaly (CULA); Patient-reported outcome; Pediatric; Psychosocial; Reconstructive surgery.
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