PURPOSE: To explore the impact of Dupuytren disease (DD) from the patients' perspective. METHODS: Audio-recorded interviews were conducted for patients with Dupuytren disease (DD) attending outpatient clinics. The interviews were transcribed and subjected to content analysis. This analysis highlighted key impact areas and common themes in individuals' personal experiences. These were then allocated to categories specified by the World Health Organization International Classification of Functioning, Disability, and Health (impairments and activity limitations) and the needs-based model of quality of life (QoL). RESULTS: Qualitative unstructured interviews were conducted with 34 patients (74% men; age, 41-80 y; mean [SD], 64 [13] y). The sample had a wide range of severity and duration of DD (range, 0.5-40; mean [SD], 13 [10] y). Nine hundred fifty-three statements relating to the impact of DD were identified from the interview transcripts. These statements fell into 2 major categories of impact: activity limitations (10 themes including problems with dressing, gripping, and personal care) and QoL (6 need categories: physiological, safety and security, social, affection, esteem, and cognitive needs). CONCLUSIONS: Findings from the interviews suggest that DD affects both performance of activities and QoL. To determine accurately the effectiveness of DD interventions from the patients' perspective, it is important to determine their impacts on both activity limitations and QoL. We intend to develop valid, reproducible, and responsive DD-specific scales for this purpose. CLINICAL RELEVANCE: The study identifies key issues specific to DD that influence patients' functioning and QoL. The information reported will form the basis of DD-specific patient-reported outcomes measures for use in clinical practice and evaluations of interventions.
PURPOSE: To explore the impact of Dupuytren disease (DD) from the patients' perspective. METHODS: Audio-recorded interviews were conducted for patients with Dupuytren disease (DD) attending outpatient clinics. The interviews were transcribed and subjected to content analysis. This analysis highlighted key impact areas and common themes in individuals' personal experiences. These were then allocated to categories specified by the World Health Organization International Classification of Functioning, Disability, and Health (impairments and activity limitations) and the needs-based model of quality of life (QoL). RESULTS: Qualitative unstructured interviews were conducted with 34 patients (74% men; age, 41-80 y; mean [SD], 64 [13] y). The sample had a wide range of severity and duration of DD (range, 0.5-40; mean [SD], 13 [10] y). Nine hundred fifty-three statements relating to the impact of DD were identified from the interview transcripts. These statements fell into 2 major categories of impact: activity limitations (10 themes including problems with dressing, gripping, and personal care) and QoL (6 need categories: physiological, safety and security, social, affection, esteem, and cognitive needs). CONCLUSIONS: Findings from the interviews suggest that DD affects both performance of activities and QoL. To determine accurately the effectiveness of DD interventions from the patients' perspective, it is important to determine their impacts on both activity limitations and QoL. We intend to develop valid, reproducible, and responsive DD-specific scales for this purpose. CLINICAL RELEVANCE: The study identifies key issues specific to DD that influence patients' functioning and QoL. The information reported will form the basis of DD-specific patient-reported outcomes measures for use in clinical practice and evaluations of interventions.
Authors: Audrey C Quinn; Deepti Bhargava; Yahia Z Al-Tamimi; Matthew J Clark; Stuart A Ross; Alan Tennant Journal: BMJ Open Date: 2014-04-03 Impact factor: 2.692
Authors: Michael Ng; Dipti Thakkar; Lorraine Southam; Paul Werker; Roel Ophoff; Kerstin Becker; Michael Nothnagel; Andre Franke; Peter Nürnberg; Ana Isabel Espirito-Santo; David Izadi; Hans Christian Hennies; Jagdeep Nanchahal; Eleftheria Zeggini; Dominic Furniss Journal: Am J Hum Genet Date: 2017-09-07 Impact factor: 11.025