Caregiver Versus Surgeon Concerns in New Diagnosis of Congenital Hand and Upper Extremity Anomalies

Purpose: The initial office visit can be a stressful time for families with children with congenital upper extremity differences. These families may have concerns that differ from the information that pediatric hand surgeons believe is important to discuss. The purpose of this study was to compare topics that families and surgeons believe are most important to address at the initial office visits to better inform and guide that visit. Methods: Qualitative interviews were conducted with 15 pediatric hand surgeons and 17 caregivers of children with congenital upper extremity differences. Interviews were conducted using semi-structured guides. Interviews were recorded, transcribed, and analyzed using thematic analysis to identify recurring themes from both study groups. Results: Overarching themes were similar between the groups and included diagnosis/cause, treatment, psychosocial considerations, future outcomes, and further resources. However, emphasis among these themes differed, with surgeons emphasizing the cause and events leading up to the diagnosis and caregivers preferring to discuss next steps and treatment options. Surgeons also discussed feelings of grief or guilt more commonly than the caregivers. Conclusions: Although surgeons emphasize the cause and psychosocial impact of a newly diagnosed congenital upper extremity difference at the initial office visit, caregivers mostly focused on the future and next steps that can be taken. Clinical relevance: Surgeons should ensure to address these issues so that families are comfortable with the treating surgeon and believe that their concerns are being adequately addressed.