Generating an assessment profile of congenital upperextremity anomalies

In the first part of our study, it was aimed to generate an assessment profile to evaluate the problems experienced by children with congenital upper extremity anomalies. In the second part of our study, it was aimed to investigate feasibility for the assessment profile. In the first part, seventeen parents with children with congenital upper extremity anomalies were interviewed. As a result of the interviews, it was found that the children had problems with sensory processing, normal development, emotional state and activities of daily living. An evaluation profile was generated by combining the assessment tools in the Congenital Upper Limb Anomalies Data Collection Reference Guide, developed by the International Consortium for Health Outcome Measurement (ICHOM), with the results of family interviews. The main headings of the assessment profile generated for children with congenital upper extremity anomalies are patient demographic factors, basic clinical status, upper extremity functions, normal developmental stages, sensory processing, activities of daily living, mental health/emotional state, and health-related quality of life. Turkish translation and cultural adaptation of 12 different PROMIS short forms included in the assessment profile generated. A pilot study to test the feasibility of the assessment profile was completed with 40 children with congenital upper extremity anomalies. In the pilot study, joint range of motion, muscle test and grip strength measurements were completed with difficulty in some anomalies. The clinical applicability of the evaluation profile in children with congenital upper extremity anomalies was found to be easy. As a result of our study, the assessment profile fields generated for children with congenital upper extremity anomalies are patient demographic factors, basic clinical status, upper extremity functions, normal developmental stages, sensory processing, activities of daily living, mental health/emotional state, health-related quality of life.