This site uses cookies. By continuing to browse the site you are agreeing to our use of cookies.

ACHD in primary care V1

  • Research type

    Research Study

  • Full title

    "Lost to follow up", an exploration of the care pathway of the patient with adult congenital heart disease within Primary Care- a mixed methods study.



  • Contact name

    Robyn Lotto

  • Contact email

  • Sponsor organisation

    Liverpool John Moores University

  • Duration of Study in the UK

    5 years, 0 months, 26 days

  • Research summary

    Patients with long term conditions, such as congenital heart disease (CHD), should be followed up by specialist teams. However, this often doesn't happen. This aim of the following study is designed to better understand how and why adult patients with congenital heart disease (ACHD) may become "lost to follow up care".

    The study will be conducted in 3 phases and follows on from an audit of primary care patients. The methodology for this aspect can be read at: (Ellison, Lamb et al. 2013) This does not form part of this ethics application.
    Phase 1
    Aim: Explore mechanisms through which patients with ACHD become "lost to follow up".
    Methods: Case note review of a sample of notes drawn from the audit of primary care patients described above. Patients will be fully informed and consent will be sought prior to including notes.
    Analysis : Quantitative measures of engagement, as well as creation of a narrative exploring patient interactions with healthcare services.

    Phase 2
    Aim: Explore the experiences of clinicians caring for patients with ACHD in Primary care
    Methods: Semi structured interviews with ten to twenty healthcare professionals working within primary care.
    Analysis: Constant comparative based approach

    Phase 3
    Aim: Explore the experiences of patients with ACHD who have become "lost to follow up".
    Methods: Semi structured interviews with ten to twenty patients identified as having been "lost to follow up" through the audit.
    Analysis: Constant comparative based approach

    Ellison, S., J. Lamb, A. Haines, S. O'Dell, G. Thomas, S. Sethi, J. Ratcliffe, S. Chisholm, J. Vaughan and V. Mahadevan (2013). "A guide for identification and continuing care of adult congenital heart disease patients in primary care." International journal of cardiology 163(3): 260-265.

  • REC name

    London - Riverside Research Ethics Committee

  • REC reference


  • Date of REC Opinion

    21 Apr 2022

  • REC opinion

    Further Information Favourable Opinion