| Title: |
Development and initial psychometric validation of a patient reported outcome measure for Crohn’s perianal fistula – the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale |
| Authors: |
Adegbola, Samuel O; Dibley, Lesley; Sahnan, Kapil; Wade, Tiffany; Verjee, Azmina; Sawyer, Rachel; Mannick, Sameer; McCluskey, Damian; Bassett, Paul; Yassin, Nuha; Warusavitarne, Janindra; Faiz, Omar; Phillips, Robin; Tozer, Phil J; Norton, Christine; Hart, Ailsa L |
| Publisher Information: |
BMJ Publishing Group |
| Publication Year: |
2020 |
| Collection: |
University of Greenwich: Greenwich Academic Literature Archive |
| Subject Terms: |
RT Nursing |
| Description: |
Introduction Crohn’s perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments and despite recommendations by a global consensus, there are currently no specific patient-derived quality of life tools to measure response to treatment. We present a new validated patient-reported outcome measure (PROM) for this complicated disease phenotype. Methods A draft questionnaire was generated using unstructured qualitative patient interviews on the experience of living with Crohn’s perianal fistula, a nationwide multidisciplinary consensus exercise, a systematic review of outcomes assessing medical/surgical/combined treatment and a patient and public involvement day. Psychometric properties were assessed including construct validity (by comparison with the Hospital Anxiety and Depression Scale (HADS) and the UK Inflammatory Bowel Disease Questionnaire (UK-IBDQ)), and reliability and responsiveness was assessed by test–retest analysis. Results Data from 211 patients contributed to development of a final 28-item questionnaire. The Crohn’s Anal Fistula Quality of Life (CAF-QoL) demonstrated good internal consistency (Cronbach’s alpha 0.88), excellent stability (intraclass correlation 0.98) and good responsiveness and construct validity, with positive correlation with the UK-IBDQ and HADS. Conclusion The CAF-QoL scale is ready for use as a PROM in research and clinical practice. It complements objective clinical evaluation of fistula by capturing impact on the patient. |
| Document Type: |
article in journal/newspaper |
| File Description: |
application/pdf |
| Language: |
English |
| ISSN: |
0017-5749 |
| Relation: |
https://gala.gre.ac.uk/id/eprint/30307/8/30307%20DIBLEY_Pyschometric_Validation_Of_A_Patient_Reported_Outcome_Measure_For_Crohns_%28OA%29_2020.pdf; https://gala.gre.ac.uk/id/eprint/30307/7/30307%20DIBLEY_Pyschometric_Validation_Of_A_Patient_Reported_Outcome_Measure_For_Crohns_%28AAM%29_2020.pdf; Adegbola, Samuel O, Dibley, Lesley ORCID logoorcid:0000-0001-7964-7672 , Sahnan, Kapil, Wade, Tiffany, Verjee, Azmina, Sawyer, Rachel, Mannick, Sameer, McCluskey, Damian, Bassett, Paul, Yassin, Nuha, Warusavitarne, Janindra, Faiz, Omar, Phillips, Robin, Tozer, Phil J, Norton, Christine and Hart, Ailsa L (2020) Development and initial psychometric validation of a patient reported outcome measure for Crohn’s perianal fistula – the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale. Gut, 70 (9). pp. 1649-1656. ISSN 0017-5749 (Print), 1468-3288 (Online) (doi:10.1136/gutjnl-2019-320553 ) |
| DOI: |
10.1136/gutjnl-2019-320553 |
| Availability: |
https://gala.gre.ac.uk/id/eprint/30307/; https://gala.gre.ac.uk/id/eprint/30307/8/30307%20DIBLEY_Pyschometric_Validation_Of_A_Patient_Reported_Outcome_Measure_For_Crohns_%28OA%29_2020.pdf; https://gala.gre.ac.uk/id/eprint/30307/7/30307%20DIBLEY_Pyschometric_Validation_Of_A_Patient_Reported_Outcome_Measure_For_Crohns_%28AAM%29_2020.pdf; https://doi.org/10.1136/gutjnl-2019-320553 |
| Rights: |
cc_by_nc_4 |
| Accession Number: |
edsbas.93EAAE77 |
| Database: |
BASE |