Wilburn J, McKenna S, Crawford SR, Perry-Hinsley D, Bayat A. Determining the true impact of dupuytren's disease: a qualitative study. Poster presented at the 2011 ISPOR 14th Annual European Congress; November 2011. Madrid, Spain. [abstract] Value Health. 2011 Nov; 14(7):A314-5.

OBJECTIVES: To explore the impact of Dupuytren’s Disease (DD) on patients’ quality of life (QoL) and identify implications for clinical practice. A search of the literature failed to identify a patient-reported outcome measure for assessing the impact of DD. The study was designed to be the first stage in the development of such a measure.

METHODS: The needs-based model of QoL was adopted and unstructured qualitative interviews were conducted with DD patients attending out-patients clinics. Data were transcribed and then underwent interpretative phenomenological analysis (IPA) to identify the key impact areas and common themes in individuals’ personal experiences.

RESULTS: Thirty-four DD patients (73.5% male; aged 41-80; mean (SD): 64.2 (12.5) years) were interviewed. The sample had a wide range of duration of DD (0.5-40; mean (SD) 12.6 (9.9) years). A total of 953 statements relating to the impact of DD were identified from the interview transcripts. These statements fell into 3 major categories of impact; emotional impairment (4 themes including having no confidence in hand and being embarrassed), activity limitations (10 themes including dressing, gripping and personal care) and QoL (11 themes including avoiding physical contact, self-consciousness and socialisation).

CONCLUSIONS: Dupuytren’s disease impacts on patients in three main areas; emotional reactions, activity limitations and QoL. In any trial designed to determine the benefits of new interventions for the disease it is important to ensure that each of these areas is assessed. It is intended to develop valid and reliable DDspecific scales to cover each of these outcomes.

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