Caring for People With Untreated Pectus Excavatum: An International Online Survey

Robert S. Eisinger, Saleem Islam

Research output: Contribution to journalArticlepeer-review

3 Citations (Scopus)


Background: Pectus excavatum is a chest wall deformity with no known cause and no standardized guidelines for evaluation or management. There is a pressing need to characterize the symptoms that these individuals experience and to evaluate a potential mismatch between their expected and observed experiences with health care. We hypothesized that these individuals would feel that their health-care needs are not adequately met. Methods: A total of 331 participants with untreated pectus excavatum from 47 countries recruited from the Pectus Awareness and Support Group completed a questionnaire about living with pectus excavatum. We focused on characterizing physical and psychosocial symptom frequency and whether these problems were discussed with providers during encounters related to pectus excavatum. Results: A total of 46% and 31% of participants experience daily physical and psychosocial symptoms, respectively, but providers disproportionally focus on physical symptoms. Seventy-seven percent and 61% of participants thought their providers could do more to address their physical and psychosocial symptoms, respectively. Only 8% of participants were very satisfied after their most recent health-care visit about pectus excavatum. The overwhelming majority of participants have encountered providers that lacked basic knowledge about pectus. Conclusions: The results of this questionnaire expose a major discrepancy between expectations and delivery of care for people with pectus excavatum. These individuals should be routinely screened for both physical and psychosocial symptoms by general practitioners.

Original languageEnglish
Pages (from-to)590-594
Number of pages5
Issue number3
Publication statusPublished - Mar 2020
Externally publishedYes


  • pectus excavatum
  • physical symptoms
  • psychosocial symptoms


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