中文版慢性荨麻疹生活质量问卷（CU-Q2oL）信效度验证

【摘要】 目的 检验中文版慢性荨麻疹生活质量问卷（CU-Q2oL）的信效度。方法 翻译英文原版CU-Q2oL以及回译和文化调试，确定中文版CU-Q2oL的条目。2019年1 - 12月对北京大学第一医院皮肤性病科就诊的195例慢性自发性荨麻疹伴或不伴慢性诱导性荨麻疹患者每2周进行1次随访，随访时填写CU-Q2oL、皮肤病生活质量指数问卷（DLQI）以及1周疾病活动度问卷评分（UAS7），共随访2次。每次随访后，医生依据患者病情为每例患者调整治疗方案。通过探索性因子分析，提取问卷因子数目，并通过分析CU-Q2oL与DLQI、UAS7的相关性判断聚合效度，通过计算Cronbach α系数检测CU-Q2oL的内在一致性信度；通过分析UAS7的变化量与CU-Q2oL评分变化量的相关系数判断CU-Q2oL的敏感度。结果 自中文版CU-Q2oL问卷中提取出4个因子，分别为“症状”、“日常功能活动”、“睡眠问题”及“限制”因子，共23个条目，累计方差贡献率为74.011%。CU-Q2oL所有条目的Cronbach α系数为0.961，4个因子Cronbach α系数为0.804 ~ 0.933，提示极好的内部一致性。CU-Q2oL问卷总分和DLQI评分、UAS7分别呈中度相关，相关系数分别为0.437、0.560（均P＜0.01）。71例患者参与第2次随访，CU-Q2oL问卷总分变化量与UAS7评分变化量呈中度相关，相关系数为0.392（P＜0.01）。结论 中文版CU-Q2oL具有极好的内部一致性信度和良好的信效度，可用于评估我国慢性自发性荨麻疹患者的生活质量。     

瘙痒症患者瘙痒与生活质量状况的调查研究

目的分析评价瘙痒症患者的瘙痒特点和生活质量状况。方法采用问卷调查的方法,评价315名瘙痒症患者的瘙痒特征和生活质量状况。结果瘙痒症患者的生活质量评分为12.1,不同程度和不同部位的瘙痒症患者生活质量各不相同,瘙痒评分越高,生活质量评分也越高,生活质量越差。结论瘙痒症患者生活质量明显受损。     

成人寻常型银屑病瘙痒特征及对生活质量的影响调查

【摘要】 目的 调查成人寻常型银屑病患者瘙痒的流行程度及临床特征,评估瘙痒对睡眠和生活质量的影响。方法 2020年1 - 12月在兰州大学第二医院采用医师评估和问卷调查相结合的方式,评估291例寻常型银屑病患者的瘙痒特征、睡眠及生活质量。运用二元Logistic回归分析影响瘙痒的危险因素,多元线性回归分析影响睡眠及生活质量的相关因素。结果 291例寻常型银屑病患者,男184例（63.23%）,女107例（36.77%）,年龄M（Q1,Q3）为37.00（28.00,50.00）岁。258例（88.64%）有瘙痒症状,瘙痒程度以中度多见。皮损严重程度（OR = 1.252,95% CI 1.114 ~ 1.407,P＜0.001）是患者瘙痒的主要危险因素。银屑病面积和严重程度指数与瘙痒数字评价量表（NRS）评分（r = 0.65,P＜0.001）、5-D′S评分（r = 0.65,P＜0.001）、匹兹堡睡眠质量指数量表（PSQI）评分（r = 0.48,P＜0.001）及皮肤病生活质量指数量表（DLQI）评分（r = 0.63,P＜0.001）均存在正相关,瘙痒严重程度NRS评分与DLQI评分（r = 0.61,P＜0.001）和PSQI评分（r = 0.55,P＜0.001）存在正相关,5-D′S评分与DLQI评分（r = 0.62,P＜0.001）和PSQI评分（r = 0.64,P＜0.001）均存在正相关。结论 大部分成人寻常型银屑病患者存在中等程度瘙痒;疾病严重程度显著影响患者的瘙痒严重程度,瘙痒对睡眠和生活质量有较大影响。     

手足皮肤反应患者生活质量量表汉化及信效度分析

目的对手足皮肤反应患者生活质量量表(HF-QoL)进行汉化及信效度分析。方法严格遵循2005年发表的语言调试专家共识进行汉化,之后纳入30例患者进行信效度分析。结果Cronbach’α=0.943,与美国国立癌症研究所(NCI)分级、皮肤病生活质量指标调查表(DLQI)量表显著相关。因子分析共提取3个公因子,累及解释76.035%的总变异,有内在逻辑性。结论汉化后的量表信效度较好,适合临床及科研推广应用。     

单纯性老年性瘙痒症患者生活质量调查

目的探讨心理干预对单纯性老年性瘙痒症患者生活质量的影响。方法 64例单纯性老年性瘙痒症患者随机分为治疗组和对照组,分别于心理干预前、后采用皮肤病生活质量指数（DLQI）问卷调查。结果心理干预治疗后的患者生活质量明显改善（P〈0.01）,而对照组治疗前、后无明显变化（P〉0.05）。结论单纯性老年性瘙痒症患者除常规的躯体治疗外,应对患者实施心理干预,有助于提高患者的生活质量。     

性病患者心理及生活质量调查分析

目的:探讨性病对患者心理及生活质量的影响。方法:采用问卷调查方法对120例性病患者进行问卷调查。结果:多数患者患病后对睡眠质量,工作学习,性生活质量影响较大,并因此产生恐惧、羞耻、自卑、自责、疑病等心理障碍表现。结论:性病严重影响着患者的心理及生活。     

中文版荨麻疹控制评分量表及信效度验证

【摘要】 目的 翻译荨麻疹控制评分（UCT）,并检验该量表的信效度、敏感性以及筛选准确性。方法 经过翻译、回译和文化调试,确定荨麻疹控制评分量表的条目。应用该量表调查51例慢性自发性荨麻疹（CSU）、41例慢性诱导性荨麻疹（CIndU）患者和11例CSU合并CIndU患者。入组后8周内,81例使用抗组胺药治疗,8例使用奥马珠单抗治疗,14例抗组胺药联合奥马珠单抗治疗。入组时和入组后第4、8周时,用皮肤病学生活质量指数（DLQI）、荨麻疹活动评分（UAS）评估生活质量损害和疾病活动情况。采用Cronbach′s α系数评估问卷内部一致性信度。通过与DLQI、UAS28评分比较,检验中文版UCT的聚合效度、已知族群效度、敏感性及筛选准确性。结果 中文版UCT包含4个条目,回顾性评价过去4周内疾病的临床症状和体征、对生活质量的影响、治疗效果和总体疾病控制情况。CSU组UCT量表各条目得分的Cronbach′s α系数为0.886 ~ 0.945,CIndU组为0.834 ~ 0.958。入组时,CSU组与CIndU组UCT与DLQI评分显著负相关（rs值分别为-0.672,-0.578,均P＜0.01）。第4周和8周时,CSU组UCT与UAS28、DLQI评分均呈显著负相关（4周：rs值分别为-0.654、-0.829,均P＜0.01;8周：rs值分别为-0.717、-0.765,均P＜0.01）,CIndU组UCT与DLQI评分亦显著负相关（rs值分别为-0.834、-0.778,均P＜0.01）。CSU组第4周与第8周之间UCT变化量与UAS变化量显著相关（rs = -0.569,P＜0.01）;与入组时比较,第4、8周时 UCT变化量与相应DLQI评分变化量显著相关（rs值分别为-0.693、-0.447,均P＜0.01）。对于CIndU组,与入组时比较,第4周与第8周时UCT变化量与DLQI变化量亦显著相关（rs值分别为-0.615、-0.408,均P＜0.01）。不同UAS、DLQI评分组间UCT评分差异均有统计学意义（均P＜0.05）。 结论 中文版UCT是有效、可靠的CSU和CIndU患者的临床管理工具,可用于评估疾病控制情况,在一定程度上反映疾病活动度及疾病相关生活质量。     

银屑病患者瘙痒特征及其对生活质量的影响

目的:确定银屑病患者的瘙痒特征并评价其生活质量。方法:采用问卷调查的方法,评价银屑病患者的瘙痒特征和生活质量。结果:131例银屑病患者中有89.31%伴有不同程度的瘙痒,其中87.18%的患者因瘙痒影响心情,62.39%因瘙痒影响睡眠;相关分析显示,瘙痒强度、频率、持续时间与银屑病严重程度和皮损红斑、浸润、脱屑呈正相关(P0.05)。结论:大多数银屑病患者有不同程度的瘙痒,且对患者的生活质量产生的负面影响。     

不同严重程度银屑病对患者生活质量的影响

目的：探讨不同严重程度银屑病对患者生活质量的影响。方法：设计生活质量问卷，从日常生活、工作和学习、社会交往、心理等几个方面，调查504例18岁以上寻常性银屑病患者，由医生完成银屑病的严重度评价（PASI积分）。最后用SPSS统计软件对资料进行分析和整理。结果：498例银屑病患者因病情轻重不同，对患者日常生活、社会交往、心理的影响不同。表现为饮食受限占63．3％，睡眠差占40．2％，穿衣受限占59．0％，使用公共交通工具及公用设施受影响占26．5％，理发或美容时遭到拒绝占15．1％，患者收入受到影响占31．2％；这些表现在病情严重的患者中更明显。皮损发生在阴股部的患者性生活受到极严重影响。银屑病患者在社交或其他公共场所感到不自在者占58．8％，与人交往的愿望受限占43．3％，不愿参加社会活动占29％，尽量避免与他人握占占25．8％；随病情加重愈加明显。54．9％的患者觉得自尊心受到伤害，总觉得别人在有意回避自己者占26．6％。64．4％的患者因为自己的银屑病焦虑不安，83．1％的患者经常担心银屑病会复发或加重。15．9％的患者曾有轻生的想法，中重度患者中比例增加。结论：随着病情严重程度的增加，银屑病对患者的日常生活、工作学习、社会交往和心理的影响较大；应在生理－心理－社会医学的模式上治疗银屑病，除皮肤科躯体治疗外，传授疾病知识，指导患者应付疾病所带来的问题以及心理治疗，有助于提高生活质量。     

非黑素瘤皮肤癌患者生活质量及影响因素调查

【摘要】 目的 调查非黑素瘤皮肤癌（NMSC）患者生活质量及其影响因素。方法 2017年6月至2020年1月,通过自制问卷及皮肤病生活质量指数量表（DLQI）调查153例在中国医学科学院皮肤病医院整形外科住院接受手术治疗的NMSC患者的人口学、临床、行为学资料,并计算DLQI评分评估其生活质量。采用χ2检验、Kruskal-Wallis H检验、多因素Logistic回归分析NMSC患者生活质量的影响因素。结果 回收有效问卷146份（95.4%）。146例患者年龄31～92岁,101例（69.2%）60岁以上,59例（40.4%）有长期紫外线暴露史。基底细胞癌（BCC）66例（45.2%）,侵袭性鳞状细胞癌（SCC）57例（39.0%）,乳房外Paget病16例（11.0%）及Bowen病7例（4.8%）。DLQI评分中位数［M（P25,P75）］为3（1,7）,99例（67.8%）生活质量受到影响,52例（35.6%）受到轻度影响,47例（32.2%）受到中度以上影响。多因素Logistic回归分析显示,皮肤癌类型、长期紫外线照射史、3个及以上子女数量影响患者的生活质量。结论 NMSC降低患者的生活质量,且皮肤癌类型、长期紫外线照射史、子女数量是NMSC患者生活质量的影响因素。     

慢性荨麻疹患者生活质量评估及皮肤病生活质量指数的因子分析和信度分析

目的 探讨慢性荨麻疹（CU）对患者生活质量的影响,分析皮肤病生活质量指数（DLQI）在评估CU患者生活质量时的因子结构及信度。方法 用DLQI测量CU患者的生活质量,用因子分析及信度分析评估DLQI的因子结构及信度。结果 调查85例门诊就诊的慢性荨麻疹患者,13例因合并其他疾病或未完全回答DLQI的问题而被剔除。72例CU患者年龄（33.43 ± 0.90）岁,病程中位数6个月。DLQI评分为1 ~ 23,平均9.46 ± 0.61,DLQI评分与患者的年龄、性别、病程间相关性无统计学意义。CU对生活质量影响最显著的是症状与感受（50%）,其次为工作和学习（40.67%）。因子分析显示,DLQI量表用于测评CU时,特征值 > 1的因子有2个。信度分析显示F = 31.88（P < 0.01）,Hotelling T2检验,F = 29.87（P < 0.01）,整体量表Cronbach α = 0.836,删除问题1,α达最大值0.849。结论 CU对患者的生活质量有中等程度的影响。DLQI可以用来测评CU患者的生活质量,结果的可信度较高。     

Effect of the Pruritus on the Quality of Life: A Preliminary Study

Background

Pruritus affects the quality of life (QoL) in the patients. However, little is known of the impacts of itching on the QoL in the literature.

Objective

In this study, a questionnaire eliciting specific responses about pruritus was used to determine the effect of itching and its severity on QoL in chronic pruritic patients.

Methods

One hundred ten adult patients with chronic pruritus were surveyed. Once itch severity had been self-reported by patients, together with Skindex-29, they have been given the 18-item Pruritus-related Life Quality Index (PLQI) questionnaire, which was used to generated the new index.

Results

Significant correlations have been found between the pruritus severity score of participants and their total Skindex-29 (p<0.001) with its function, emotion and symptom subscale scores (p<0.001 for each). Also, significant correlations were evident between total PLQI (p<0.001) and its psychosocial negativities, difficulties in everyday activities and social live subscale scores (p<0.001 for each). In particular, the emotion subscale of Skindex-29 (p=0.02) and psychosocial negativity subscale of PLQI (p=0.02) were significantly high in psychopathologic patients. A highly positive statistical correlation between Skindex-29 and PLQI scales was evident (r=0.845, p<0.001). For reliability, Cronbach''s coefficient a coefficients were 0.931 for the Skindex-29 scale and 0.918 for the PLQI scale.

Conclusion

The results demonstrate that chronic pruritus appreciably reduces the QoL. PLQI could be used in the development of new questionnaires for determining the QoL of patients with chronic itch.     

Melasma and assessment of the quality of life in Brazilian women

BACKGROUND

Melasma is a chronic, acquired hyperpigmentation disease on sun-exposed areas of the skin, which affects patients'' quality of life.

OBJECTIVE

To assess the impact on the quality of life of women living in Florianópolis, Brazil, through questionnaire (MelasQol), and investigate the clinical aspects and risk factors for melasma, correlating them with the MelasQol scores.

METHODS

This study was performed on 51 melasma patients cared for at the University Hospital of the Universidade Federal de Santa Catarina. The variables included were: age, gender, age of onset of melasma, Fitzpatrick phototype (I-VI), duration and family history of melasma, onset of melasma during pregnancy, use of hormonal contraceptive, thyroid disorder and distribution of melasma. The MelasQoL questionnaire, validated for Brazilian Portuguese (MelasQoL-BP), was applied.

RESULTS

The mean age was 38.43±6.75 years. All patients were women. The most common Fitzpatrick skin phototypes were III (49.02%) and IV (33.33%). Melasma had a mean age of onset of 29.18±7.05 years and a mean duration of 9.25±6.18 years. The majority of patients did not have familial history of melasma (50.98%). Melasma onset was associated with pregnancy (45.10%). The MelasQoL-BP analysis revealed significant emotional impact on patients, such as feeling bothered (94.11%), frustrated and embarrassed (64.71%), and depressed (52.94%) about their skin appearance, as well as unattractive (78.43%). No social impact was observed (P>0.05).

CONCLUSION

Melasma has a strong emotional impact on quality of life, resulting especially from feelings about skin appearance.     

Translation,cultural adaptation,and validation of the American Skindex-29 quality of life index

BACKGROUND

Measuring the quality of life measure of patients with dermatologic diseases is an important concern. The instruments to evaluate it are commonly originally written in English and need to be translated and validated to be used in different cultures.

OBJECTIVE

The purpose of this paper is to translate and validate the Skindex-29 questionnaire to Brazilian Portuguese to be used in our country as a quality of life assessment instrument in dermatologic patients.

METHODS

The first step was the translation from English to Brazilian Portuguese and the back-translation by two native speakers. The translated version was then used for the second step, when three questionnaires were applied to 75 patients (43 of whom were classified as lightly affected and 32 as heavily affected by their dermatologic conditions): an identification questionnaire, the translated version of Skindex-29, and the Brazilian Portuguese version of Dermatologic Life Quality Index (DLQI). Additionally, the generic questionnaire Short Form 36 (SF-36) was applied to 41 of these patients. The last step to evaluate reproducibility was repeating the Skindex-29 questionnaire by the same researcher one week later in 44 patients.

RESULTS

Reliability was observed in global Skindex-29 scale (α=0.934), and its domains emotions (α=0.926), symptoms (α=0,702), and psycosocial functioning (α=0.860). The reproducibility showed high intraclass correlations. High intra class correlations was observed, thus validating reliability.

CONCLUSIONS

The Skindex-29 quality of life questionnaire was properly translated and validated to Brazilian Portuguese.     

Validation of the Skindex-17 quality of life assessment instrument for a Brazilian population

BackgroundHealth-related quality of life assesses how diseases affect the daily life of people; there are several generic instruments for this assessment in dermatology. Skindex was created in 1996; it is a multidimensional instrument, aiming to encompass some psychological and social aspects not yet addressed by other questionnaires. Among its versions (Skindex-29, 16, and 17), Skindex-17 had not been validated in Brazil.ObjectivesTo validate Skindex-17 for use in Brazilians with dermatological diseases.MethodsThis was a methodological, cross-sectional, and prospective study of 217 patients attended at the Dermatology Service Outpatient Clinic, Faculdade de Medicina de Botucatu - Universidade Estadual Paulista (Botucatu, SP, Brazil), from December 2017 to September 2019. The following were evaluated: content validity, filling time, internal consistency, dimensional structure, concurrent validity (DLQI), temporal stability, and responsiveness.ResultsThe sample consisted of 71% women, mean age (SD) of 45 (16) years; phototypes II−IV accounted for 95% of the cases. Cronbach's alpha coefficients were 0.82 and 0.93 for the symptoms and psychosocial conditions, respectively. A high correlation was observed with the DLQI score: symptoms (rho = 0.69) and psychosocial conditions (rho = 0.75). The instrument's two-dimensional structure was confirmed through confirmatory factor analysis. Temporal stability (ICC > 0.9) and score responsiveness (p ≤ 0.02) were verified. The instrument was shown to be feasible in clinical practice due to the content validation performed by professionals and patients, as well as the low time spent completing it (< 5 min).Study limitationsSingle-center study, with patients exclusively from the public healthcare system.ConclusionsSkindex-17 was shown to be a valid and consistent instrument for assessing quality of life among patients with dermatological diseases, in Brazil. Its two-dimensional structure was confirmed.     

The validity and reliability of the Pressure Ulcer Quality of Life instrument: A methodological study

AimThis study aimed to adapt the Pressure Ulcer Quality of Life instrument to Turkish and to determine the validity and reliability by using the Rasch model.Materials and methodsThis methodological study used forward translation, expert opinion, back translation, pilot testing, and finalization for the language adaptation of the instrument. Prior to back translation, the instrument was assessed by five experts certified in wound care nursing. Then, the comprehensibility of the instrument was tested in the pilot study. The study was conducted between March 2017 and September 2019 at one private, one state, and four university hospitals in Turkey. Eligible participants were patients 18 years of age or older, having pressure injury, and fully conscious. Data were collected from a total of 250 patients by using a demographic and clinical history form, the Pressure Ulcer Quality of Life instrument, and the World Health Organization Quality of Life - Brief Form Turkish scale. The instrument's internal construct validity using the Rasch model, the external construct validity, internal consistency, and test-retest reliability were assessed.ResultsThe final Turkish version of the Pressure Ulcer Quality of Life self-report instrument differed from the original, comprising 74 items under the following ten subscales: three regarding symptoms, plus one itchiness item; four regarding physical functioning; two regarding psychological well-being, self-consciousness, and appearance; and one regarding social participation.ConclusionThe Turkish version of the PU-QOL is a valid, reliable, and widely available instrument for measuring quality of life for patients with pressure injury.     

雄激素性脱发和斑秃患者生活质量及抑郁情况调查分析

目的 调查脱发患者生活质量与抑郁状态及其影响因素,为改善其生活质量采取相应临床对策提供依据.方法 采用皮肤病生活质量指数(DLQI)和流行病学研究中心抑郁量表(CES-D),对雄激素性脱发和斑秃脱发患者237例进行问卷调查,评估其生活质量与抑郁状况,使用方差分析和logistic回归分析其影响因素.结果 237例脱发患者收集到有效答卷218份,218例脱发患者DLQI量表均分为9.1±5.4,总体上脱发对生活质量的影响为中度影响,重度及以上影响者占38.07%.CES-D量表均分为14.8±9.9,有抑郁倾向者占37.61%.DLQI得分和CES-D得分呈正相关(r=0.29,P<0.01).单因素方差分析结果显示,不同年龄、性别、文化程度及就诊次数对DLQI得分差异无统计学意义.多因素logistic回归分析显示,脱发患者发生抑郁倾向的危险因素有:就诊次数(OR=1.81,95%CI:1.21~2.69)和DLQI影响程度(OR=1.08,95%CI:1.03~1.13).结论 脱发不仅影响患者生活质量,而且给患者心理带来负面影响.     

Efficacy of gabapentin in the improvement of pruritus and quality of life of patients with notalgia paresthetica

BACKGROUND

notalgia paresthetica is a subdiagnosed sensory neuropathy presenting as a condition of intense itching and hyperchromic macule on the back that interferes with daily habits.

OBJECTIVES

To determine the efficacy of treatment of notalgia paresthetica using oral gabapentin, assessing the degree of improvement in itching and influence on quality of life. Moreover, to evaluate the signs and symptoms associated with notalgia paresthetica.

METHODS

We conducted an experimental, non-randomized, parallel, non-blinded study including 20 patients with clinical and histopathological diagnosis of notalgia paresthetica. After application of the visual analogue scale of pain adapted for pruritus and of the questionnaire of dermatology life quality index (DLQI), ten patients with visual analogue scale > 5 were given treatment with gabapentin at the dose of 300 mg/day for four weeks. The other ten were treated with topical capsaicin 0.025% daily for four weeks. After the treatment period, patients answered again the scale of itching.

RESULTS

The use of gabapentin was responsible for a significant improvement in pruritus (p=0.0020). Besides itching and hyperchromic stain on the back, patients reported paresthesia and back pain. It was observed that the main factor in the worsening of the rash is heat.

CONCLUSION

Gabapentin is a good option for the treatment of severe itching caused by nostalgia paresthetica.