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掌腱膜挛缩症对患者活动及生活质量的影响。

The impact of Dupuytren disease on patient activity and quality of life.

作者信息

Wilburn J, McKenna S P, Perry-Hinsley D, Bayat A

机构信息

Galen Research Ltd, Manchester, United Kingdom.

出版信息

J Hand Surg Am. 2013 Jun;38(6):1209-14. doi: 10.1016/j.jhsa.2013.03.036.

Abstract

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.

摘要

目的

从患者角度探讨掌腱膜挛缩症(DD)的影响。

方法

对到门诊就诊的掌腱膜挛缩症(DD)患者进行录音访谈。访谈内容被转录并进行内容分析。该分析突出了个人经历中的关键影响领域和共同主题。然后将这些主题分配到世界卫生组织国际功能、残疾与健康分类(损伤和活动受限)以及基于需求的生活质量(QoL)模型所指定的类别中。

结果

对34例患者(74%为男性;年龄41 - 80岁;平均[标准差],64[13]岁)进行了定性非结构化访谈。该样本的掌腱膜挛缩症严重程度和病程范围广泛(范围为0.5 - 40;平均[标准差],13[10]年)。从访谈记录中识别出953条与掌腱膜挛缩症影响相关的陈述。这些陈述分为两大影响类别:活动受限(10个主题,包括穿衣、抓握和个人护理方面的问题)和生活质量(6个需求类别:生理、安全与保障、社交、情感、自尊和认知需求)。

结论

访谈结果表明掌腱膜挛缩症会影响活动表现和生活质量。为了从患者角度准确确定掌腱膜挛缩症干预措施的有效性,确定其对活动受限和生活质量的影响很重要。我们打算为此开发有效的、可重复的且有针对性的掌腱膜挛缩症量表。

临床意义

该研究确定了掌腱膜挛缩症特有的影响患者功能和生活质量的关键问题。所报告的信息将构成用于临床实践和干预评估的掌腱膜挛缩症特定患者报告结局指标的基础。

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