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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

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

Adegbola, Samuel O, Dibley, Lesley ORCID: 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:https://doi.org/10.1136/gutjnl-2019-320553)

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Abstract

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.

Item Type: Article
Uncontrolled Keywords: Crohn’s anal fistula, patient reported outcomes, quality of life
Subjects: R Medicine > RT Nursing
Faculty / School / Research Centre / Research Group: Faculty of Education, Health & Human Sciences
Faculty of Education, Health & Human Sciences > School of Health Sciences (HEA)
Last Modified: 18 Oct 2021 09:13
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
Selected for GREAT 2019: None
Selected for REF2021: None
URI: http://gala.gre.ac.uk/id/eprint/30307

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