Caring for People With Untreated Pectus Excavatum: An International Online Survey.
PMID 31730833 · Chest · 2020 · DOI 10.1016/j.chest.2019.10.034
Authors: Robert S Eisinger; Saleem Islam
Abstract
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. 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. 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. 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.
Adolescent; Adult; Australia; Body Dissatisfaction; Body Dysmorphic Disorders; Canada; Chest Pain; Child; Child, Preschool; Clinical Competence; Dyspnea; Female; Funnel Chest; General Practitioners; Health Personnel; Humans; Infant; Male; Middle Aged; Needs Assessment; Patient Satisfaction; Self Concept; Surgeons; Surveys and Questionnaires; United Kingdom; United States; Young Adult
Cite
Robert S Eisinger; Saleem Islam. Caring for People With Untreated Pectus Excavatum: An International Online Survey. Chest (2020). PMID 31730833. DOI 10.1016/j.chest.2019.10.034.