Division of Pediatric Surgery, Department of Surgery, University of Florida College of Medicine, Gainesville, FL.
Division of Pediatric Surgery, Department of Surgery, University of Florida College of Medicine, Gainesville, FL.
Chest. 2020 Mar;157(3):590-594. doi: 10.1016/j.chest.2019.10.034. Epub 2019 Nov 12.
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.
漏斗胸是一种胸廓畸形，其病因不明，也没有评估或管理的标准化指南。因此，迫切需要描述这些患者所经历的症状，并评估他们对医疗保健的预期体验与实际体验之间是否存在潜在差异。我们假设这些患者会认为他们的医疗需求没有得到充分满足。
我们共招募了来自 47 个国家的 331 名未经治疗的漏斗胸患者，他们均来自漏斗胸意识与支持小组。这些患者填写了一份关于漏斗胸生活体验的调查问卷，我们主要关注身体和心理社会症状的发生频率，以及这些问题是否在与漏斗胸相关的就诊期间与医疗服务提供者进行了讨论。
共有 46%和 31%的参与者分别每天经历身体和心理社会症状，但提供者不成比例地关注身体症状。77%和 61%的参与者认为他们的提供者可以更多地解决他们的身体和心理社会症状。只有 8%的参与者在最近一次关于漏斗胸的就诊后非常满意。绝大多数参与者遇到的医疗服务提供者缺乏关于漏斗胸的基本知识。
这份问卷的结果揭示了漏斗胸患者的期望与实际医疗服务之间存在巨大差异。一般医生应该定期对这些患者进行身体和心理社会症状筛查。
