Phoenix Comprehensive Assessment of Pectus Excavatum Symptoms (PCAPES)
- PMID: 39831262
- PMCID: PMC11740047
- DOI: 10.21037/jtd-24-1325
Phoenix Comprehensive Assessment of Pectus Excavatum Symptoms (PCAPES)
Abstract
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.
Keywords: Chest wall; Haller index; patient-reported outcome measurement; pectus excavatum (PE); survey.
2024 AME Publishing Company. All rights reserved.
Conflict of interest statement
Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://jtd.amegroups.com/article/view/10.21037/jtd-24-1325/coif). D.E.J. serves as an unpaid editorial board member of Journal of Thoracic Disease from February 2023 to January 2025. D.E.J. reports that she is a consultant with IP/royalty rights under Mayo Clinic Ventures with Zimmer Biomet, Inc. and speaker for Atricure, Inc. and no support of the manuscript was provided by the entities listed; Zimmer Biomet does manufacture the Nuss Implants used at Mayo Clinic Arizona for repair of pectus excavatum, and Atricure, Inc. manufactures the cryoablation device used for cryoablation of intercostal nerves. The other authors have no conflicts of interest to declare.
Figures
References
LinkOut - more resources
Full Text Sources