McKenna SP, Wilburn J, Twiss J, Ben-L'amri M, Kemp K, Campbell S. Crohn's disease: symptoms, functional limitations and quality of life. Poster presented at the 19th Annual Conference of the International Society for Quality of Life Research (ISOQOL); November 2012. Budapest, Hungary. [abstract] Qual Life Res. 2012; 21(1):103. doi: 10.1007/s11136-012-0248-x.

AIMS: Research into the impact of Crohn's Disease (CD) and its treatment on patients has employed generic patient-reported outcome (PRO) measures. These are likely to miss important impacts of the illness and ask questions of limited relevance. Qualitative interviews were conducted with CD patients to determine which issues were of greatest importance.;

METHODS: Interviews were conducted with CD patients attending outpatient clinics at the Manchester Royal Infirmary. The interviews, which were audiorecorded, covered all aspects of the impact of the illness and its treatment. Interviewees were encouraged to discuss any topic they considered relevant. Transcriptions of the interviews were contentanalysed in relation to the WHO International Classification of Functioning, Disability and Health and the needs-based quality of life (QoL) model.;

RESULTS: Thirty CD patients (18 (60.0 % female; aged 25–68; mean (SD): 47.9 (14.3) years) were interviewed. Participants had a wide range of CD duration (2–40; mean (SD): 14.3 (13.4) years). 2,641 statements relating to the impact of CD were identified. These fell into 3 major categories of outcome, each with a number of sub-themes. These were Symptoms (including; diarrhoea, constipation, pain, fatigue and emotional impairment), activity limitations (such as difficulties with walking, bending, lifting, carrying and doing jobs around the house) and QoL (including preoccupation with the disease, reduced socialisation, hygiene issues, self-image problems and perceptions of lack of control).;

CONCLUSIONS: The study was successful in identifying a wide range of outcomes of CD, many of which are not addressed by generic PRO measures. To determine whether new interventions are beneficial from the patient’s perspective evidence is needed that they improve the outcomes identified. It is intended to include these issues in a new PRO specific to CD.

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