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银屑病患者对疾病的认知及医患关系:一项基于问卷调查的研究

Perception of disease and doctor-patient relationship experienced by patients with psoriasis: a questionnaire-based study.

作者信息

Linder Dennis, Dall'olio Elena, Gisondi Paolo, Berardesca Enzo, Gennaro Emilia De, Pennella Angelo R, Giannetti Alberto, Peserico Andrea, Girolomoni Giampiero

机构信息

Section of Dermatology, University of Padua, Padua, Italy.

出版信息

Am J Clin Dermatol. 2009;10(5):325-30. doi: 10.2165/11311190-000000000-00000.

Abstract

Many studies have addressed the impact of psoriasis on quality of life, but few studies have investigated patient perception of the disease or the patient-physician relationship. As with most chronic diseases, improvement in the patient-physician relationship may be important in the proper management of patients with psoriasis. To assess how psoriasis and its treatments are subjectively experienced by patients as well as patient expectations with regard to the patient-physician relationship. A discussion agenda for 'focus group meetings' was organized by a group of sociologists, psychologists, educators, researchers, and clinicians active in the field of psychodermatology. Four meetings were held in Northern and Central Italy and participants included one moderator and either eight dermatologists or eight patients. Discussions were based on a predefined agenda and included: (i) the psychological representation of psoriasis; (ii) the hetero- and self-perception of the patient; (iii) the patient-physician relationship; and (iv) the development of an educational intervention for dermatologists in order to improve the patient-physician relationship. A questionnaire, based on the information gathered at the focus groups, was administered to 323 patients with moderate to severe chronic plaque psoriasis from 17 dermatology clinics throughout Italy. Three hundred patients completed the questionnaire. Psoriasis elicited anger, annoyance at the inconvenience of the disease, and irritation in approximately 50% of the patients, whilst 38% of patients were unable to describe their emotional state. Aspects of life that were limited by psoriasis included clothing (57%), social interactions (43%), and personal hygiene (31%). The disease was often seen by patients as incomprehensible, incurable, and uncontrollable. More than half of the patients stressed their need to be listened to by the treating physician, and their wish that the physician should use simple language and should improve their psychological skills and interpersonal communication techniques. Dermatologists need to convey to patients with psoriasis the feeling of 'understanding the disease,' of hope about its curability, and the 'perception of control.' These elements should be taken into account when treating patients and whenever educational interventions are planned.

摘要

许多研究探讨了银屑病对生活质量的影响,但很少有研究调查患者对该疾病的认知或患者与医生的关系。与大多数慢性病一样,改善患者与医生的关系对于银屑病患者的合理管理可能很重要。为了评估患者如何主观体验银屑病及其治疗方法,以及患者对患者与医生关系的期望。一组活跃于心理皮肤病学领域的社会学家、心理学家、教育工作者、研究人员和临床医生组织了“焦点小组会议”的讨论议程。在意大利北部和中部举行了四次会议,参与者包括一名主持人和八名皮肤科医生或八名患者。讨论基于预先确定的议程,包括:(i)银屑病的心理表征;(ii)患者的他人认知和自我认知;(iii)患者与医生的关系;(iv)为皮肤科医生制定教育干预措施以改善患者与医生的关系。根据焦点小组收集的信息编制了一份问卷,对来自意大利各地17家皮肤科诊所的323例中度至重度慢性斑块状银屑病患者进行了调查。300名患者完成了问卷。银屑病在大约50%的患者中引发了愤怒、对疾病不便的烦恼和恼怒,而38%的患者无法描述自己的情绪状态。受银屑病限制的生活方面包括着装(57%)、社交互动(43%)和个人卫生(31%)。患者通常认为这种疾病难以理解、无法治愈且无法控制。超过一半的患者强调他们需要被主治医生倾听,并且希望医生使用简单的语言,提高他们的心理技能和人际沟通技巧。皮肤科医生需要向银屑病患者传达“理解疾病”的感觉、对其可治愈性的希望以及“控制感”。在治疗患者和规划教育干预措施时都应考虑这些因素。

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