Perry-Hinsley D’s research while affiliated with University of Manchester and other places

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.

DUPUYTREN’S DISEASE AND QUALITY OF LIFE S. P. McKenna1, J. N. Wilburn1, S. R. Crawford1, D. Perry-Hinsley2, A. Bayat2 1Galen Research Ltd, Manchester, Greater Manchester, United Kingdom; 2Plastic and Reconstructive Surgery Research, Manchester, Greater Manchester, United Kingdom Patient interviews were conducted to explore the impact of Dupuytren’s Disease (DD) on patients’ quality of life (QoL) and to identify implications for clinical practice. Qualitative interviews were conducted with DD patients attending outpa- tient clinics in the UK. Data were transcribed and underwent thematic analysis to identify the key impact areas and common themes in individuals’ personal experi- ences. Thirty-four DD patients (73.5% male; aged 41–80 years; mean [SD]: 64.2 (12.5) years) were interviewed. The sample had a wide range of DD duration (0.5–40 years; mean [SD] 12.6 (9.9) years). Nine hundred fifty-three statements describing the impact of DD were identified from the transcripts. These statements fell into three major categories of outcome; emotional impairment (four themes: loss of confidence in hand, reduced pleasure in life, embarrassment and difficulty with concentration), activity limitations (10 themes, including difficulty dressing, gripping, employment limitations and in personal care) and QoL (11 themes, includ- ing feelings of fragility, avoidance of physical contact, self-consciousness, loss of independence, difficulty planning and reduced socialization). Trials designed to determine the benefits of new interventions for DD should include assessments of changes in emotional distress, activity limitations and QoL. Only then will it be possible to determine whether the intervention is of true benefit to the patient. Such measures should be specific to DD in order to ensure that real changes are identified. The study was the first stage in the development patient-based, DD-specific outcome scales. These scales will be thoroughly tested for reproducibility (reliability) and construct validity and adapted for use in multinational clinical studies and routine clinical practice