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Cardiff Cardiac Ablation PROM (C-CAP)

Lay description

This study aimed to develop and test disease specific questionnaires (also known as Patient Reported Outcome Measures or PROMs) for patients in the UK who have been treated with ablation for cardiac arrhythmias. The potential benefits of using PROMs questionnaires include support for clinicians to improve their performance, assisting patients in making informed choices and strengthening audit and research.

C-CAP study

Phase 1 of the study completed in January 2013 and included interviews with 25 patients from two sites. Feedback from these interviews together with input from a multidisciplinary team helped us improve drafts of the questionnaires to ensure the questions are fully inclusive and easy to understand. During phase 2 of the study patients were asked to complete a pre-procedure questionnaire relating to their symptoms, quality of life and procedure expectations. They were also  sent post-procedure questionnaires relating to procedural outcomes, symptoms and quality of life at 8 to 16 weeks post procedure and at 1 and 5 years post-procedure. The responses obtained from these PROMs were used to ensure that the questionnaires are working accurately and reliably.

Over 550 patients were subsequently enrolled during Phase 2 to complete postal questionnaires during a five year follow up. The Cardiff Cardiac Ablation PROM (C-CAP) has been successfully validated and is freely available to use with versions suitable for pre and post ablation. A number of publications detailing this work are available below.

Publications

Evans J, Withers K, Lencioni M, Carolan-Rees G, Wood KA, Patrick H, Griffith M. (2019) Health Related Quality of Life Benefits from Ablation Continue at One Year: A longitudinal study using the C-CAP questionnaire and EQ5D. Pacing and Clinical Electrophysiology, 42; 66; 705-711. DOI: 10.1111/pace.13675.

White J, Withers KL, Lencioni M, Carolan-Rees G, Wilkes A, Wood K, Patrick H, Cunningham D, Griffith M. (2015) Cardiff cardiac ablation PROM (C-CAP): a multi-centre validation study of a new questionnaire for patients undergoing catheter ablation for cardiac arrhythmias in the UK. Quality of Life Research, 1-13.

Withers KL, Wood K, Carolan-Rees G, Patrick H, Lencioni M, Griffith M. (2015) Living on a knife edge-the daily struggle of coping with symptomatic cardiac arrhythmias. Health and Quality of Life Outcomes, 13:86-91

Withers KL, Wood K, Carolan-Rees G, Patrick H, Lencioni M, Griffith M. (2015) Establishing content validity in a novel patient reported outcome measure for cardiac arrhythmia ablation patients. Health and Quality of Life Outcomes, 13: 38-44

Withers KL, White J, Carolan-Rees G, Patrick H, Lencioni M, Cunningham D, O’Callaghan P, Murray S, Wood K, Griffith M. (2014) Patient Reported Outcome Measures for Cardiac Ablation Procedures – A Multicentre Pilot to Develop a New Questionnaire. Europace 16 (11): 1626-1633

Details of the study

  • Short Study Title: PROMs for ablation of cardiac arrhythmias
  • Full Study Title: A multicentre, prospective observational study to develop, evaluate and validate Patient Reported Outcome Measures (PROMs) for patients treated with cardiac ablation for symptomatic cardiac arrhythmias
  • Chief Investigator: Dr Grace Carolan-Rees, Cedar
  • Sponsor: Cardiff and Vale University Health Board
  • Research Sites: Queen Elizabeth Hospital, Birmingham (Principal Investigator:  Dr Michael Griffith, Consultant Cardiologist); University Hospital of Wales, Cardiff (Principal Investigator:  Dr Peter O’Callaghan, Consultant Cardiologist); Freeman Hospital, Newcastle (Principal Investigator:  Dr Stephen Murray, Consultant Cardiologist & Electrophysiologist)
  • Sponsor Reference: 12-CAD-5351
  • Funding: National Institute for Health and Clinical Excellence
  • REC reference: 12/EM/0164
  • ClinicalTrials.gov number: NCT01672528