过敏性紫癜患儿遵医行为影响因素分析及对策

目的探讨过敏性紫癜(AP)患儿遵医行为的影响因素,摸索患儿不遵医行为的处理对策。方法将某医院2017年4月至2018年9月儿科收治的80例AP患儿作为研究对象,根据治疗过程中患儿的遵医嘱情况将其分为遵医嘱组(53例)与不遵医嘱组(27例),通过单因素分析探索影响患儿遵医行为的相关因素,并探讨处理对策。结果单因素分析表明陪护人群,家长对疾病、医嘱及药物的了解程度,家庭经济情况等因素均会对患儿的遵医行为产生影响。结论建议在患儿的治疗过程中实施护理干预措施,提高患儿家长的认知,从而改善患儿的治疗依从性,改善患儿的遵医行为。。     

奥马哈系统延伸护理对银屑病患者遵医行为的影响

目的分析奥马哈系统延伸护理对银屑病患者遵医行为的影响。方法回顾性分析2017年3月至2020年5月南阳市第二人民医院门诊收治的银屑病患者81例,将2017年3月至2018年7月的39例患者作为常规组,采用常规护理干预;将2018年7月至2020年5月的42例患者作为研究组,在常规组基础上采用奥马哈系统延伸护理。对比两组遵医率、复发率,统计两组干预前后银屑病面积与严重性指数(PASI)评分。结果研究组遵医率为90.48%(38/42),较常规组的71.79%(28/39)高(P<0.05);干预后,研究组PASI评分显著低于常规组(P<0.05);研究组复发率为4.76%(2/42),较常规组的23.08%(9/39)低(P<0.05)。结论奥马哈系统延伸护理应用于银屑病患者中,可提高遵医行为,加快疾病恢复,降低复发率。     

基于ARNE项目的多元化健康教育对特应性皮炎患儿家长的干预研究

目的：明确基于ARNE项目的多元化健康教育对特应性皮炎患儿和家长的干预效果。方法：选取0~2岁AD患儿和家长为研究对象,共计120例,随机分为干预组和对照组,每组60例。对照组患儿和家长接受常规诊疗活动并由接诊医生进行健康指导和答疑,干预组在接受门诊医生常规健康指导和答疑基础上由3名接受过统一培训的护师实施基于ARNE项目的多元化健康教育方案,两组干预前后使用SCORAD评分、DFI、IDQOL及《特应性皮炎防治知识调查问卷》评价干预效果。结果：干预组有效例数59例,对照组有效例数57例,干预后干预组SCORAD 评分、IDQOL评分、DFI评分分别为21.57±2.42,8.20±2.54,6.67±1.52,低于对照组的26.46±3.84,13.79±1.73,10.28±2.21,差异均有统计学意义（P<0.05),干预组知识问卷得分20.75±1.67高于对照组的16.28±2.39,差异有统计学意义（P=0.029）。结论：本研究基于ARNE项目制定的多元化健康教育方案在改善AD患儿和家属生活质量方面有重要意义。     

同伴互动支持护理对银屑病患者心理适应性及应对方式的影响

目的探讨同伴互动支持护理对银屑病患者心理适应性、应对方式的影响。方法选取某医院2019年2月至12月期间收治的60例银屑病患者,按入院先后顺序分为对照组和实验组。对照组给予常规护理,实验组在对照组基础上实施同伴互动支持护理,对比两组护理前后SAS、SDS评分及TCQS评分。结果两组干预前SAS评分、SDS评分及TCQS评分无较大差异(P 0.05);护理干预后实验组SAS评分、SDS评分低于对照组,且TCQS评分高于对照组,差异明显(P 0.05)。结论同伴互动护理支持可通过消减负性情绪提升银屑病患者心理适应性,并改善应对方式,有临床推广价值。     

群组看病及同伴教育对痤疮患者遵医行为的影响

目的 评价群组看病及同伴教育对痤疮患者遵医行为的影响,探讨痤疮患者的有效健康教育方式。方法 选取2016年12月在中国医学科学院皮肤病医院就诊的80例痤疮患者作为研究对象,按单纯随机分组方法分为干预组和对照组,每组40例。干预组给予常规健康教育的同时接受群组看病及同伴教育,对照组给予常规健康教育。在干预后1、2、4周进行遵医行为调查,比较两组的遵医行为。结果 因拒访和无应答原因脱落18例,最终干预组32例、对照组30例纳入分析。在干预1、2、4周后,干预组遵医行为总分分别为83.6 ± 9.3、85.9 ± 9.1、91.2 ± 8.4,对照组分别为77.1 ± 7.3、77.1 ± 8.6、79.1 ± 10.2,干预组遵医行为的提高显著优于对照组（P组间＜0.05）,随着干预时间的增加显著性地提高（P时间＜0.05）,时间和分组之间有交互作用（P交互＜0.05）。结论 群组看病及同伴教育的健康教育模式能提高痤疮患者遵医行为。     

延续护理在寻常型银屑病患者中的应用效果观察

 目的:探讨延续护理在寻常型银屑病患者中的应用效果。方法：将69例拟出院的寻常型银屑病患者随机分为对照组34例和干预组35例，对照组予以常规出院健康知识宣教，干预组在此基础上给予12周的延续护理，12周后评价两组患者的生活质量、银屑病疾病认知程度、外用药依从性，24周后评价两组的复发次数。结果：对照组32例、干预组32例完成随访，5例失访。延续护理12周后，干预组生活质量指数量表（DLQI）得分的改善程度和银屑病知识问卷得分的改善程度均明显优于对照组（t值分别为2.11、2.10，P值均＜0.05）。第24周随访时，干预组的疾病复发次数明显低于对照组（0.75±0.67比1.22±0.61，t=-2.93，P=0.005）。干预组中，年龄（r=-0.27，P=0.033）、病程（r=-0.27，P=0.034）与DLQI得分的改善程度呈负相关。结论：延续护理能改善寻常型银屑病患者生活质量，提高疾病认知，并减少疾病复发。需针对不同年龄和病程的患者制定个体化的延续护理措施以达到更佳效果。     

综合护理干预对银屑病患者焦虑抑郁情绪的改善效果及SAS评分的影响

目的分析银屑病患者行综合护理干预对其焦虑和抑郁情绪的影响。方法选取2018年1月至2019年1月,我院收治的60例银屑病患者为研究对象,随机将研究对象分为对照组和观察组,各30例,两组患者均接受常规护理,观察组患者同时接受综合护理干预,对比分析两组患者护理后的焦虑以及抑郁情绪改善情况,同时对比两组SAS、SDS评分变化。结果护理后,观察组和对照组患者的SAS以及SDS评分均有所降低,观察组患者降低程度明显高于对照组患者,差异有统计学意义(P 0.05)。结论银屑病患者进行治疗期间,采取综合护理干预予以辅助,可以显著改善患者的焦虑以及抑郁情绪,进而可以使患者保持良好的心态面对疾病,达到理想的治疗效果。     

基于积极心理学的护理模式对白癜风患者心理弹性及自我感受负担的影响

目的 观察基于积极心理学的护理模式对白癜风患者心理弹性及自我感受负担的影响。方法 选取2017年8月至2019年8月某医院治疗的白癜风患者200例,将患者随机分为对照组和观察组,每组100例。对照组采用常规护理模式,观察组采用积极心理学的护理模式。比较两组护理前后的心理弹性评分、自我感受负担评分、焦虑抑郁评分,同时比较两组护理满意度情况。结果 护理前,两组CD-RISC、SPBS评分相比,无显著差异(P 0.05);护理后,观察组CD-RISC(70.35±6.88)分高于对照组的(62.19±5.13)分,观察组SPBS(27.18±1.21)分低于对照组的(30.54±2.39)分,差异有统计学意义(P 0.05)。两组护理前SAS、SDS评分比较差异无统计学意义(P 0.05)。护理后,观察组SAS(30.13±1.64)分、SDS(32.23±1.45)分,分别低于对照组的(41.58±2.55)分、(43.82±2.46)分,有显著差异(P 0.05)。观察组总护理满意率为96.00%,高于对照组(76.00%),差异有统计学意义(P 0.01)。结论 在白癜风患者的临床护理中,采取基于积极心理学的护理模式,注重对患者心理情绪的调节,能够有效改善心理弹性及自我感受负担,减少焦虑抑郁等不良情绪,提高护理满意度,临床效果非常理想。     

多学科团队协作的延续护理模式在寻常型银屑病患者中的应用

 

目的 探讨以护士为主导的多学科团队协作（MDT）延续护理模式在寻常型银屑病患者中的应用效果。方法 选取2019年12月至2020年12月在南方医科大学皮肤病医院银屑病病区接受治疗的96例寻常型银屑病患者,随机分为试验组与对照组,各48例。对照组患者出院后采用以护士主导的传统延续护理模式,试验组患者出院后采用以护士为主导、药师和临床医师共同参与的MDT延续护理模式,随访至出院后6个月,调查两组患者出院时皮损面积和严重程度指数（PASI）、疾病复发率、药物使用依从性、疾病相关知识掌握程度和生活质量。结果 出院后6个月,试验组患者较对照组患者PASI评分更低（3.87±1.82比6.43±2.57,t=7.87,P<0.01）,疾病复发率更低（10.42%比33.33%, X²=7.38,P=0.007）,药物使用依从性（83.33%比16.67%,X²=42.67,P<0.05）、疾病相关知识掌握程度（55.13±4.50比47.27±4.37,t=8.68,P<0.01）及生活质量更高（7.67±3.52比10.11±4.21,t=3.08,P=0.003）,差异均具有统计学意义。结论 在寻常型银屑病患者中应用MDT延续护理模式,能够有效减少患者皮损面积及疾病复发率,提高患者用药依从性和疾病知识掌握程度,最终提高患者生活质量,值得今后在银屑病患者的临床护理中大力推广应用。

     

糖尿病居家平台对妊娠期糖尿病患者随访管理中的影响

目的探讨糖尿病居家平台在妊娠期糖尿病患者随访管理中的应用效果。方法选择2016年10月至2018年10月海安市人民医院诊治的136例妊娠期糖尿病患者为研究对象,按照随机数字表法将其分为观察组和对照组,每组均为68例患者。观察组患者行基于糖尿病居家平台的随访管理,对照组患者行常规随访管理。比较两组患者遵医行为、妊娠结局和干预前后自我管理能力的变化。结果观察组患者适量运动、定时自我监测血糖、按时复诊、遵循饮食原则比例均优于对照组患者,其差异均具有统计学意义(均P<0.05);观察组新生儿胎儿窘迫、新生儿窒息、巨大儿、产后出血、胎膜早破、羊水过多发生率均低于对照组,其差异均具有统计学意义(均P<0.05);观察组患者剖宫产、新生儿低血糖发生率与对照组患者相比,其差异均无统计学意义(均P>0.05);观察组患者干预后普通饮食、特殊饮食、运动、血糖监测、药物、足部保养、自我管理能力总分均高于对照组患者,其差异均具有统计学意义(均P<0.05)。结论基于糖尿病居家平台的随访管理应用于妊娠期糖尿病患者,可以提高患者遵医行为,改善妊娠结局,增强患者自我管理能力,值得推广。     

Impact of psoriasis in the quality of life of children,adolescents and their families: a cross-sectional study

Background: Psoriasis is a chronic and inflammatory disease that impairs quality of life and causes psychological symptoms. Despite the high prevalence of psoriasis in pediatric patients, studies investigating the impact of psoriasis in the quality of life of children, adolescents and families are sparse.Objective: To investigate the impact of psoriasis in the quality of life of children and adolescents with psoriasis and their families and to determine depression and anxiety levels of the patients.Methods: A total of 58 patients with psoriasis aged 7-18 years (median age: 11) and a family member of each patient were included in the study. Children’s Dermatology Life Quality Index (CDLQI), Family Dermatology Life Quality Index (FDLQI), Children’s Depression Inventory (CDI) and State-Trait Anxiety Inventory for Children (STAIC) were used in the study.Results: The median PASI score of the patients included in the study was 1.8. The median CDLQI and FDLQI scores in the study groups were 5 and 10, respectively. The median CDI score, STAIC-state and STAIC-trait scores of the patients were 6, 28 and 32.5, respectively.Study limitations: Lack of a control group and patient assessment of disease severity. Relatively mild disease severity of the subjects.Conclusions: Psoriasis has a negative impact in the quality of life of children, adolescents and their families, even in the presence of mild disease. Considering that impairment in quality of life may be associated with psychosocial morbidity, a combined approach with medical therapy, family counseling and quality of life assessment may be beneficial in this patient group.     

Psoriasis: is it the tip of the iceberg for the quality of life of patients and their families?

Objective To evaluate the impact of psoriasis on patients’ and their relatives’ quality of life (QoL). Methods Eighty patients with their accompanying family members were included in the study. For measuring health related QoL (HRQoL) of patients with psoriasis, two questionnaires were used: Short Form 36 Health Survey (SF‐36) and EuroQol (EQ‐5D). Disease‐specific HRQoL was assessed by the Dermatology Life Quality Index. For measuring the quality of life of patients’ relatives, a specific questionnaire for dermatological diseases was used (Family Dermatology Life Quality Index, FDLQI). Results Of our patients, 88.3% reported that their disease affects in many and different ways their QoL whereas only 11.2% reported that psoriasis does not influence at all their life. Regarding FDLQI, 90% of the participating family members, responded that their relative’s psoriasis affected their own QoL. Conclusions Psoriasis is a chronic disease that affects in a cumulative way the quality of life of both patients and their close relatives.     

Quality of life and clinical features in Swedish children with psoriasis

Psoriasis is a common, chronic disease and in one-third of the patients it begins during the first 2 decades of life. The burdens of psoriasis are many, and some can be assessed with quality of life questionnaires. The aim was to investigate the impact of childhood psoriasis on quality of life in children and their parents and to correlate certain clinical findings with quality of life. Forty-five Swedish children (4-16 years, 28 girls) with psoriasis, and their parents, were investigated with the validated questionnaires Children's Dermatology Life Quality Index (5-16 years, n = 42), The Infant's Dermatitis Quality of Life Index (4 years, n = 3), and Dermatitis Family Impact (n = 45), the two latter with the word eczema replaced by psoriasis. Clinical examination was performed, and psoriasis severity was scored with Psoriasis Area and Severity Index. Chronic plaque psoriasis was the most common clinical type (87%). Four of the children had joint complaints. Ninety-three percent had pruritus the preceding 3 days. Ninety-three percent were receiving treatment. Median Psoriasis Area and Severity Index score was 3.3 (range 0.5-12.3). Median score for the Infant's Dermatitis Quality of Life Index was 4.0 (range 2-12), for Children's Dermatology Life Quality Index 4.0 (0-24), and for Dermatitis Family Impact questionnaire 4.0 (0-25). No significant gender difference existed. The Children's Dermatology Life Quality Index scores were higher for younger (5-8 yrs) than older (9-16 yrs) children and higher for those with joint complaints. The Dermatitis family impact scores correlated significantly with Children's Dermatology Life Quality Index and Psoriasis Area and Severity Index scores, but the Children's Dermatology Life Quality Index did not correlate with Psoriasis Area and Severity Index. The Visual Analog Scale and quality of life scores were significantly correlated. Psoriasis in children affects quality of life in the subjects and their parents. Joint complaints and pruritus significantly impair quality of life.     

Quality of life in mothers of children with psoriasis

Background

Patients' and their mothers' quality of life is severely affected by childhood psoriasis. Almost all children have a chronic illness that lasts until adulthood, which puts them at risk for lifelong difficulties like stigma, psychiatric comorbidity, and suicide.

Objective

Evaluation of the effects of childhood psoriasis on the mothers' quality of life was the project's primary objective.

Subjects and Methods

100 mothers of children with various kinds of psoriasis participated in the study. The Family Dermatology Life Quality Index (FDLQI) was used to evaluate the mothers' quality of life.

Results

The mother's FDLQI score was between 3 and 25, with a mean of 13. In terms of how the FDLQI was interpreted, 8 moms had an incredibly enormous impact, 63 mothers had a very significant impact, 26 mothers had a moderate impact, and 3 mothers had a modest impact. We discovered a substantial direct link between the mother's FDLQI and the children's PASI scores. Furthermore, we discovered that scalp and pustular psoriasis had the highest FDLQI scores, indicating a poor quality of life.

Conclusion

Both the quality of life for affected children and their cares may be negatively impacted by childhood psoriasis. Age of the children, PASI score, and kind of psoriasis can all have an impact on how psoriasis in childhood affects the mother.     

The Family Dermatology Life Quality Index: measuring the secondary impact of skin disease

BACKGROUND: Skin diseases are known to have a major impact on the lives of patients and their families. Many instruments are available to measure the health-related quality of life (HRQoL) of patients but no measure has been developed so far to quantify the secondary impact on family members of the patients. OBJECTIVES: To develop and validate a dermatology-specific instrument to measure the adverse impact on the HRQoL of family members of patients with skin disease. METHODS: Detailed semi-structured interviews were conducted with family members of patients to identify different aspects of HRQoL affected. An initial draft version of the questionnaire based on the main topic areas was pilot tested to assess the face and content validity. A 10-item questionnaire, the Family Dermatology Life Quality Index (FDLQI), was finalized after modifications to the draft questionnaire based on feedback from families and dermatology professionals and on item reduction. Psychometric evaluation was conducted on a new cohort of family members (n = 132) who completed the FDLQI and the patients (n = 109) who completed the Dermatology Life Quality Index (DLQI). RESULTS: Fifty-nine different aspects of family members' HRQoL were identified from the analysis of the interviews, which were categorized into main topic areas. Factor analysis of 10 items of the final questionnaire revealed two factors and together these explained 60% of the common variance. The FDLQI demonstrated high internal consistency (Cronbach's alpha = 0.88) and test-retest (intraclass correlation coefficient = 0.94) reliabilities. The responsiveness of the instrument to change was shown by significant change in the family members' FDLQI scores in cases where patients' clinical condition either improved or worsened. Construct validity was assessed by testing a number of a priori hypotheses. A strong correlation was seen between the family members' FDLQI scores and patients' DLQI scores (r = 0.69), a significantly higher FDLQI score was seen for inflammatory skin diseases compared with noninflammatory diseases/isolated lesions (P < 0.0001), and there was a positive relationship between the family members' FDLQI scores and patients' disease severity (r = 0.49). CONCLUSIONS: The FDLQI is simple and practical and seems to have the potential to be used as an additional outcome measure in clinical practice and evaluation research.     

Etanercept for the treatment of psoriasis in the elderly

This study's objective was to analyze the effect of etanercept on Psoriasis Area and Severity Index (PASI) 50, PASI 75, and Dermatology Life Quality Index in geriatric and nongeriatric populations. We conducted a post hoc analysis of two large phase III randomized placebo trials of etanercept. There were no statistically significant differences between the elderly and young with regard to the number of patients reaching a PASI 50 or PASI 75 at any of the 3 dosing regimens. Baseline Dermatology Life Quality Index scores were not statistically significant between both groups and both the elderly and young had similar changes in Dermatology Life Quality Index with therapy. A limitation of the study was the small number of patients in the elderly group. In conclusion, psoriasis and its treatment has a similar impact on quality of life in the elderly as it does in the young.     

Improved quality of life among patients with psoriasis after supervised climate therapy at the Canary Islands

A total of 559 Norwegian patients with psoriasis completed the Dermatology Life Quality Index questionnaire and a dermatologist assessed psoriasis severity before and after climate therapy. There was no control group. A clinically important improvement in quality of life after climate therapy is demonstrated. Improvement in disease severity is significantly related to improvement in quality of life.     

Quality of Life in Family Members of Vitiligo Patients: A Questionnaire Study in Saudi Arabia

Background

Many dermatologic disorders are known to adversely affect quality of life (QoL) in close relatives or partners of patients; however, it is unknown whether vitiligo impacts the QoL of family members.

Objective

The aim of this study was to identify the level and domains in which the QoL of partners/relatives of patients with vitiligo are affected by the disease.

Methods

A total of 141 patients with vitiligo, along with their family members, were recruited to complete validated QoL questionnaires, including the Dermatology Life Quality Index (DLQI) and the Family Dermatology Life Quality Index (FDLQI).

Results

Family member QoL was affected in 129 (91.5 %) of subjects. Mean FDLQI score was 10.3 ± 6.4 standard deviation. Higher FDLQI score (greater impairment in QoL) was significantly associated with male patients, a shorter duration of disease, and higher educational levels in family members. The most affected FDLQI items in order of decreasing incidence were emotional impact, burden of care, impact on the physical well-being of the family member, problems due to the reaction of others in response to the patient’s skin appearance and effect on social life. Overall FDLQI score and the number of items affected correlated with overall patient DLQI score (p < 0.001, r = 0.56 and p < 0.001, r = 0.53, respectively).

Conclusions

Vitiligo has a major impact on the QoL of family members of patients and often significantly impairs many aspects of their lives. Educational and supportive programs are recommended for family members of vitiligo patients who are at an increased risk for QoL impairments.     

Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology‐specific instruments

The patient is the centre of a web of relationships, and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments. Four of them concerned atopic dermatitis (Dermatitis Family Index, DFI; Parents’ Index QoL Atopic Dermatitis, PiQoL‐AD; QoL in primary caregivers of children with atopic dermatitis, QPCAD; Childhood Atopic Dermatitis Impact Scale, CADIS), two measured the impact of psoriasis in family members (Psoriasis Family Index, PFI; FamilyPso), one the impact of epidermolysis bullosa (Epidermolysis Bullosa Burden of Disease, EB‐BoD), one of ichthyosis (Family Burden Ichthyosis, FBI), and one was generic for dermatological conditions (Family Dermatology Life Quality Index, FDLQI). The European Academy of Dermatology and Venereology quality of life taskforce recommends that the impact of a skin disease on family and caregivers should be measured as part of any thorough evaluation of the burden of a disease. Guidelines are given to choose the most appropriate instruments.     

The evaluation of family impact of recessive dystrophic epidermolysis bullosa using the Italian version of the Family Dermatology Life Quality Index

Background Severe skin diseases, such as epidermolysis bullosa (EB), may have a strong impact not only on patients but also on caregivers. A specific questionnaire evaluating the family impact of dermatological conditions has been created, the Family Dermatology Life Quality Index (FDLQI), but it has not yet been translated in Italian and validated. Objective To evaluate the burden of recessive dystrophic EB on family caregivers, using for the first time the Italian version of the FDLQI, and to validate the instrument. Methods Patients with recessive dystrophic EB participated in a postal survey enquiring about the burden of EB on family caregivers. They completed the Family Strain Questionnaire and the FDLQI and they marked on a silhouette of the human body the skin lesion distribution. Results Data on 62 family caregivers were collected. The overall mean FDLQI score was 9.8. The most frequently reported problems were the time spent on looking after the patient, emotional distress, physical well‐being, and increased household expenditure. FDLQI scores were higher in family caregivers of patients between 10 and 20 years. The Italian FDLQI showed high internal consistency, construct and convergent validity. Factor analysis revealed the presence of one factor structure underlying the items of the FDLQI, which explained 51.5% of the total variance, very similar to the original questionnaire (55.8%). Conclusion The Italian version of the FDLQI seems to be a useful tool to evaluate the impact of EB on family caregivers. Further studies are necessary to test this instrument in other dermatological conditions.