Nash Avril S, McAteer Helen, Schofield Julia, Penzer R, Gilbert Annie K
1Centre for Research in Primary and Community Care,University of Hertfordshire,Hatfield,Hertfordshire,UK.
2The Psoriasis Association,Northhampton,UK.
Prim Health Care Res Dev. 2015 Jul;16(4):415-23. doi: 10.1017/S1463423614000450. Epub 2014 Nov 5.
To establish how people with psoriasis in the United Kingdom today experience living with their condition including diagnosis, treatment, healthcare provision and impact on daily life.
Psoriasis is a debilitating long-term inflammatory skin disease which can result in severe itching, discomfort and soreness, and may be associated with problems beyond the specific symptoms related to the skin. For many it is accompanied by difficult-to-manage treatment regimes, emotional distress and a negative impact on their quality of life and psychosocial functioning. To date there is little published information about the health experiences of people in the United Kingdom with psoriasis.
A postal self-administered questionnaire was completed by members of the Psoriasis Association and the responses analysed (n = 1564).
The findings suggest some similarities to surveys in other nations, but specifically highlighted that patients feel under-informed and are dissatisfied with current treatment regimes. Responses provided an insight into aspects of the condition that treatments should be targeting. Specific areas of negative impact on psychosocial functioning were identified, including the lack of available support for those experiencing emotional distress. The research provides important information about how the care of patients with psoriasis can be improved, especially at primary care level. This includes: improved training in psoriasis knowledge and awareness at general practitioner level and greater use of dermatology specialist nurses in primary care settings; more effective and manageable treatment regimes that target visible areas and general well-being; greater support for emotional distress and psychosocial functioning.
了解如今英国银屑病患者的生活体验，包括诊断、治疗、医疗服务提供以及对日常生活的影响。
银屑病是一种使人衰弱的慢性炎症性皮肤病，可导致严重瘙痒、不适和疼痛，且可能与皮肤特定症状之外的问题有关。对许多人来说，它伴随着难以管理的治疗方案、情绪困扰以及对其生活质量和心理社会功能的负面影响。迄今为止，关于英国银屑病患者健康体验的公开信息很少。
银屑病协会成员完成了一份邮寄式自填问卷，并对回答进行了分析（n = 1564）。
研究结果显示与其他国家的调查有一些相似之处，但特别强调患者觉得信息不足，对当前治疗方案不满意。回答揭示了治疗应针对的病情方面。确定了对心理社会功能产生负面影响的具体领域，包括对那些经历情绪困扰的人缺乏可用的支持。该研究提供了关于如何改善银屑病患者护理的重要信息，尤其是在初级保健层面。这包括：提高全科医生对银屑病知识和认识的培训，以及在初级保健环境中更多地使用皮肤科专科护士；针对可见部位和整体健康状况制定更有效且易于管理的治疗方案；为情绪困扰和心理社会功能提供更多支持。
