Eghlileb A M, Davies E E G, Finlay A Y
Department of Dermatology, Wales College of Medicine, Cardiff University, Heath Park, Cardiff CF14 4XN, UK.
Br J Dermatol. 2007 Jun;156(6):1245-50. doi: 10.1111/j.1365-2133.2007.07881.x. Epub 2007 Apr 25.
Psoriasis affects the quality of life (QoL) of relatives and partners of patients with psoriasis, but little is known about this secondary impact.
To identify the different ways in which the lives of relatives and partners of people with psoriasis are affected by the disease.
Relatives and partners of patients with psoriasis participated. Subjects were excluded if they had any skin disease. The severity of the psoriasis of the patients was measured using the Psoriasis Area and Severity Index (PASI), Dermatology Life Quality Index (DLQI) and Psoriasis Disability Index (PDI). Subjects either had intensive qualitative interviews with one researcher or responded to a postal questionnaire. Both methods identified ways in which their relative's or partner's psoriasis had affected their lives.
Thirty-three subjects were interviewed and 30 replied by postal questionnaire. Twenty-eight of the 63 subjects were relatives (seven men and 21 women) and 35 were partners (16 men and 19 women). The median age was 51 years (range 20-80). The patients (n = 63) had a mean DLQI of 10, mean PDI of 13.8 and mean PASI of 5.2. Forty different aspects of QoL impairment of relatives and partners were identified. The percentage of subjects in whom any of these aspects were mentioned is illustrated in six different categories. Seventy per cent stated that the treatment of their relative or partner resulted in them having to spend extra time on housework; 57% described psychological pressures including anxiety, being upset and being worried about the patient's future; 55% described social disruption due to lack of social confidence either because of embarrassment or because of the time required for care duties; 44% described limitations to holiday plans, sport and leisure activities and evenings out; 37% described limitations on their daily activities such as shopping, work and time spent with other family members; 37% felt that their close relationships had deteriorated. Only 8% described no effect at all on their QoL. The QoL of the relatives and partners (number of categories affected) was more closely related to the patients' QoL (DLQI: r = 0.77, P < 0.001; PDI: r = 0.67, P < 0.001) than to the objective disease severity scores (PASI: r = 0.34, P < 0.05).
The QoL of partners and relatives of people with psoriasis can be significantly affected. Many different aspects of everyday life that are affected and the psychological impacts of having a partner or relative with psoriasis have been identified. It is of great importance to identify these issues to allow clinicians to develop appropriate care strategies not only for patients with psoriasis, but also for their partner and family.
银屑病会影响银屑病患者亲属及伴侣的生活质量（QoL），但对于这种继发性影响知之甚少。
确定银屑病患者的亲属及伴侣的生活受该疾病影响的不同方式。
银屑病患者的亲属及伴侣参与研究。患有任何皮肤病的受试者被排除。使用银屑病面积和严重程度指数（PASI）、皮肤病生活质量指数（DLQI）和银屑病残疾指数（PDI）来衡量患者银屑病的严重程度。受试者要么与一名研究人员进行深入的定性访谈，要么回复邮寄问卷。两种方法都确定了其亲属或伴侣的银屑病影响他们生活的方式。
33名受试者接受了访谈，30名通过邮寄问卷回复。63名受试者中有28名是亲属（7名男性和21名女性），35名是伴侣（16名男性和19名女性）。中位年龄为51岁（范围20 - 80岁）。患者（n = 63）的平均DLQI为10，平均PDI为13.8，平均PASI为5.2。确定了亲属及伴侣生活质量受损的40个不同方面。在六个不同类别中说明了提及这些方面中任何一个方面的受试者百分比。70%的人表示其亲属或伴侣的治疗导致他们不得不花额外时间做家务；57%的人描述了心理压力，包括焦虑、心烦意乱以及担心患者的未来；55%的人描述了由于尴尬或护理职责所需时间导致缺乏社交信心而造成的社交干扰；有44%的人描述了假期计划、运动和休闲活动以及外出活动受到限制；37%的人描述了他们日常活动受到限制，如购物、工作以及与其他家庭成员相处的时间；37%的人觉得他们的亲密关系恶化了。只有8%的人表示其生活质量完全没有受到影响。亲属及伴侣的生活质量（受影响的类别数量）与患者的生活质量（DLQI：r = 0.77，P < 0.001；PDI：r = 0.67，P < 0.001）的相关性比与客观疾病严重程度评分（PASI：r = 0.34，P < 0.05）的相关性更强。
银屑病患者伴侣及亲属的生活质量可能受到显著影响。已确定了日常生活中许多受影响的不同方面以及有银屑病伴侣或亲属所产生的心理影响。识别这些问题对于临床医生制定不仅适用于银屑病患者，也适用于其伴侣和家人的适当护理策略非常重要。
