Pectus Excavatum: lived experience

  • Research type

    Research Study

  • Full title

    An Exploratory study of the lived experience of young adults pre- and post-surgery for Pectus Excavatum

  • IRAS ID

    213329

  • Contact name

    Karen Rodham

  • Contact email

    karen.rodham@staffs.ac.uk

  • Sponsor organisation

    Staffordshire University

  • Duration of Study in the UK

    0 years, 11 months, 28 days

  • Research summary

    Pectus excavatum (PE) is a common chest wall deformity (Obermeyer & Goretsky, 2012). Three times as many boys are affected than girls(Gasior et al., 2013; NHS England 2016) and although the deformity is present at birth in about 85% of individuals, the defect often becomes dramatically more noticeable during puberty (Molik et al., 2001). NHS England (2016) state that “whilst for the majority of people the deformity will be minimal, in moderate and severe cases it can be associated with psychological distress, leading to withdrawal, social isolation and concerns about appearance.” However, PE has popularly been believed to have only cosmetic impact on the patient. This downplaying of the impact can mean that young people are not referred for corrective surgical treatment.

    There is currently a review underway to work out whether or not surgery should be offered as routine for correcting pectus deformities (NHS England, 2016). In the Clinical Commissioning Policy Proposition the evidence for and against routinely commissioning surgical correction for PE is described. However, the questions asked in the evidence review are focused on physical outcomes (like heart rate, lung capacity and infection rates). The impact of PE on a person's emotional (Psychological) state has not been considered.

    Thus, although there is recognition that PE can have a negative impact on an individual’s body image, there have been scant attempts to explore the impact and experience of PE on anything other than physical measures.

    This study aims to address this gap in our current knowlegde by exploring how PE impacts on individuals. We will be exploring patient experience and understanding of PE, before and after they have had surgery

  • REC name

    West Midlands - Solihull Research Ethics Committee

  • REC reference

    16/WM/0450

  • Date of REC Opinion

    18 Nov 2016

  • REC opinion

    Further Information Favourable Opinion