Phoenix Comprehensive Assessment of Pectus Excavatum Symptoms (PCAPES)

Background: Pectus excavatum (PE) can cause cardiopulmonary compression with a wide range of symptoms and psychosocial effects. Few validated surveys assess the extensive symptomatology of the adult pectus population. A comprehensive symptom survey was developed and validated with outcomes presented.

Methods: An observational and validation study of a novel symptom survey [Phoenix Comprehensive Assessment of Pectus Excavatum Symptoms (PCAPES)] was performed that included patients evaluated for PE from October 2020-September 2021 at Mayo Clinic Arizona. Survey validation was performed in three phases.

Results: After survey validation, 432 patients completed the PCAPES survey: median age was 30 years [interquartile range (IQR), 23.0, 39.9 years], 57.8% males, median Haller index: 4.2 (IQR, 3.6, 5.4). Common neurological complaints included headaches (74%) and positional dizziness (67%). Regarding cardiovascular symptoms, 6/7 exercise related questions had at least 70% of patients reporting limitations or inability to perform. Pulmonary-wise, >80% noted restricted breathing both with normal activity and during exercise. For gastrointestinal symptoms, nearly half reported some degree of dysphagia with 52% noting post-prandial dyspnea. Psychosocially, patients reported either avoiding activities where their chest could be visible (68%) or feeling bothered by the overall appearance of their chest (80%). Commonly reported complaints were feelings of depression and anxiety (65% each). Females and older patients (≥30) were more severely affected with cardiac symptoms (P<0.05 for all comparisons). Despite being more symptomatic, females were more likely to feel dismissed by their physicians.

Conclusions: Pectus causes a variety of symptoms, and a comprehensive survey should be performed for assessment and indication of further testing.