Caring for people with untreated pectus excavatum: An international online survey
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.
Publication ( Name of Journal)
Eisinger, R. S.,
(2020). Caring for people with untreated pectus excavatum: An international online survey. Chest, 157(3), 590-594.
Available at: https://ecommons.aku.edu/pakistan_fhs_mc_surg_paediatr/81