IPQ-R: congenital heart disease

  • Research type

    Research Study

  • Full title

    Sub-study 1: The development of condition specific modification to the Illness Perceptions Questionnaire – Revised specifically for adults with congenital heart disease: a think aloud study Sub-study 2: The development of condition specific modification to the Illness Perceptions Questionnaire – Revised specifically for adults with congenital heart disease: a focus group study Sub-study 3: The development of a condition specific modification to the Illness Perceptions Questionnaire – Revised for adults with congenital heart disease

  • IRAS ID

    324079

  • Contact name

    Joanna Brooks

  • Contact email

    Joanna.brooks@manchester.ac.uk

  • Clinicaltrials.gov Identifier

    https://osf.io/af92c/, Open Science Framework

  • Duration of Study in the UK

    1 years, 6 months, 31 days

  • Research summary

    When a person has a health condition, their beliefs about (or perceptions of) the condition can affect how they manage it, as well as psychological outcomes. Previous research has shown that clinicians can improve outcomes for patients by helping them to understand their condition in a way that encourages appropriate self-management.
    The Illness Perception Questionnaire (IPQ) and its revision (IPQ-R) were developed to assess illness perceptions in a range of conditions, and were designed to be adapted for each specific condition. The IPQ-R has been widely used but no condition-specific adaptation yet exists for congenital heart disease (CHD).

    The present study aims to modify the IPQ-R specifically for CHD. It builds on our previous work in which we asked people about their experiences of and beliefs about CHD. Our findings from that study will inform adaptations to the IPQ-R. These are likely to be word changes, and the addition or deletion of some questions. The present study and will have three components (two qualitative studies and one quantitative study). A think aloud study in which people with CHD will be asked to talk the researcher through their thoughts as they complete the adapted questionnaire, a focus group study with a group discussion about the questionnaire, and finally a larger scale survey to test the new questionnaire.

    Sub study 1 and 2: participants will be recruited through Manchester Heart Centre (MRI) or from consent to contact provided in previous studies related to this research.

    Sub-study 3: participants will be recruited through MRI, Liverpool Heart and Chest Hospital, Newcastle Freeman Hospital or Leeds General Infirmary or from consent to contact provided in previous studies related to this research.

    This research is being funding by the British Heart Foundation (non-clinical PhD studentship).

  • REC name

    London - Camden & Kings Cross Research Ethics Committee

  • REC reference

    24/LO/0162

  • Date of REC Opinion

    8 May 2024

  • REC opinion

    Further Information Favourable Opinion