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.     

Sensitivity of the Dermatology Life Quality Index to clinical change in patients with psoriasis

BACKGROUND: Quality of life is increasingly recognized as an important outcome measure in dermatology. The Dermatology Life Quality Index (DLQI) is a self-administered questionnaire designed to measure the impact of skin diseases on patients' quality of life. OBJECTIVES: To assess the responsiveness of the DLQI to variations in clinical status as measured by the Self-Administered Psoriasis Area and Severity Index (SAPASI) in a large sample of in-patients with psoriasis. METHODS: The SAPASI and the DLQI were completed by 359 in-patients with psoriasis at hospital admission and 4 weeks after discharge. Changes in SAPASI scores were used to categorize patients as improved, unchanged or worsened. Next, these groups were compared with one another with regard to the change in DLQI scores. RESULTS: Four weeks after discharge, both mean SAPASI scores and mean DLQI scores were significantly lower than at admission (P < 0.001). In improved patients, the DLQI score decreased significantly more than in worsened patients (P < 0.001), and tended to decrease more than in unchanged patients (P = 0.07). The difference in DLQI score change between improved patients and unchanged or worsened patients grouped together was highly significant (P < 0.001); also, it remained significant or nearly significant when the analysis was performed on subsets of patients based on gender and age range. CONCLUSIONS: This study contributes to building evidence of validity for the DLQI, because the instrument demonstrated the ability to detect small but meaningful changes in clinical status over time in a large sample of patients with psoriasis.     

Current severe psoriasis and the rule of tens

This review addresses the problems of defining severity of psoriasis. Concepts of severity depend on the timescale perspective from which judgement is made. Measurement needs to include assessment of signs, impact on the patient's life and the history of the disease. The concept of severity in relationship to quality of life measurement scores has been defined, so it is now possible to postulate a standard, easily remembered concept to help define 'severe psoriasis' in the clinic. The proposed Rule of Tens for current severe psoriasis from the clinician's viewpoint is: 'Current Severe Psoriasis = Body Surface Area involved > 10% or Psoriasis Area and Severity Index score > 10 or Dermatology Life Quality Index score > 10'.     

Improved health-related quality of life following a randomized controlled trial of alefacept treatment in patients with chronic plaque psoriasis

BACKGROUND: Psoriasis has a negative impact on patients' quality of life. Treatment strategies should address both the cutaneous manifestations of the disease and their impact on quality of life. OBJECTIVES: To evaluate the effect of alefacept on quality of life in 553 patients with chronic plaque psoriasis. METHODS: In this multicentre, double-blind, parallel-groups study, patients were randomized to receive alefacept for two courses, alefacept in course 1 and placebo in course 2, or placebo in course 1 and alefacept in course 2. In each course, alefacept 7.5 mg or placebo was administered once weekly by 30-s intravenous injection for 12 weeks followed by 12 weeks of observation. The Dermatology Life Quality Index (DLQI), Dermatology Quality of Life Scales (DQOLS) and Short Form-36 Health Survey (SF-36) were administered at baseline, 2 weeks after the last dose in both courses, at the beginning of course 2, and at the end of the observation period in both courses. RESULTS: In course 1, alefacept significantly reduced (improved) mean DLQI scores compared with placebo: 4.4 vs. 1.8 at 2 weeks after the last dose (P<0.0001) and 3.4 vs. 1.4 at 12 weeks after the last dose (P<0.001). Patients who received two courses of alefacept experienced additional enhancement of quality of life measures during the second course. Similar results were observed for the DQOLS. The SF-36 survey confirmed that alefacept had no negative impact on general quality of life. CONCLUSIONS: Alefacept improved quality of life in patients with chronic plaque psoriasis and maintained this benefit for at least 12 weeks following cessation of treatment. A second course of alefacept provided additional quality of life benefit.     

中国银屑病患者生活质量量表的编制与考评

目的:编制银屑病患者生活质量量表(psoriasis quality of life scale,PQOLS),并验证该量表信度和效度。方法:根据WHO对生活质量的定义提出理论框架,通过文献回顾和专家咨询的方式编制PQOLS测试版。然后采用初始量表测定银屑病患者的生活质量,根据结果对条目筛选,形成PQOLS的正式版。结果:通过文献回顾和专家咨询建立包含40个条目的备选条目池。通过条目筛选,最终形成了含22个条目的PQOLS,包括疾病、心理、生理、社会4个维度。对136例患者进行测试结果表明:量表各维度及整个量表的Cronbachα均0.8,Sperman-Brown系数均0.7;因子分析发现单因素能够代表量表的大多数因子;PQOLS与皮肤病生活质量指数(DLQI)的Pearson相关系数为0.821;PQOLS总分与银屑病皮损面积和严重程度指数(PASI)值的相关系数为0.506,生活质量与病情严重度呈显著负相关。结论:编制的PQOLS具有较好的信度、效度,适用于银屑病患者生活质量的测评。     

Ustekinumab improves health-related quality of life in patients with moderate-to-severe psoriasis: results from the PHOENIX 1 trial

Background PHOENIX 1 was a phase III, randomized, double‐blind, placebo‐controlled study that demonstrated the long‐term efficacy and safety of ustekinumab in patients with moderate‐to‐severe psoriasis. Objectives To assess the effect of ustekinumab maintenance therapy on health‐related quality of life (HRQoL) in PHOENIX 1 patients. Patients and methods Patients (n = 766) were randomized to receive ustekinumab 45 mg (n = 255) or 90 mg (n = 256) at weeks 0 and 4 and every 12 weeks thereafter, or placebo (n = 255) at weeks 0 and 4 with crossover to ustekinumab at week 12. Ustekinumab‐randomized patients achieving at least 75% improvement in Psoriasis Area and Severity Index (PASI) 75 at weeks 28 and 40 were re‐randomized at week 40 to continue ustekinumab or be withdrawn until loss of therapeutic effect. HRQoL was assessed using the SF‐36 and Dermatology Life Quality Index (DLQI). Results At baseline, more than 97% had a DLQI > 1 and the average DLQI was > 10, indicating a significant impact on patients’ HRQoL. Significantly greater proportions of patients receiving ustekinumab 45 and 90 mg achieved a normalized DLQI score (≤ 1) compared with placebo (53·2%, 52·4% and 6·0%, respectively, both P < 0·001) at week 12 and achieved a clinically meaningful improvement (increase of at least five points) in SF‐36 physical (23·1%, 33·7% and 15·6%) and mental (25·5%, 31·3% and 14·8%) component summary scores. At week 12, changes in individual DLQI and SF‐36 domains were significantly better in each ustekinumab group vs. placebo (P < 0·001). The magnitude of improvement across SF‐36 scales was greatest for the bodily pain and social functioning domains. Improvements in HRQoL were sustained with maintenance ustekinumab therapy through at least 1 year. Regression analysis showed that, after adjustment for improvement in PASI or Physician’s Global Assessment (PGA), ustekinumab‐treated patients demonstrated significant improvements in DLQI. Conclusions Ustekinumab improves HRQoL in patients with moderate‐to‐severe psoriasis. Patient‐reported outcomes measured a treatment effect beyond that indicated by clinical measures.     

Folic acid supplementation during treatment of psoriasis with methotrexate: a randomized, double-blind, placebo-controlled trial

BACKGROUND: The value of folate supplementation in methotrexate (MTX)-treated patients remains controversial. OBJECTIVES: To determine the effect of folic acid (FA) on the efficacy of MTX and the frequency of side-effects associated with MTX therapy. METHODS: A 12-week double-blind clinical trial was conducted in patients with psoriasis stable on their long-term MTX doses but not receiving FA. They were randomized into two arms of either FA 5 mg or placebo daily. MTX doses were not changed throughout the study. Patients were monitored every 3 weeks by the same observer. Assessments included Psoriasis Area and Severity Index (PASI), a visual analogue scale (VAS) of patients' perception of their psoriasis severity and the Dermatology Life Quality Index (DLQI). Adverse events were systematically recorded. Haematological and biochemical monitoring was performed. RESULTS: Twenty-two patients with psoriasis were recruited. Age, sex and weekly MTX doses were similar in both groups. All 22 patients completed the study. The mean PASI in the FA group increased from 6.4 at baseline to 10.8 at 12 weeks. In the placebo group the mean PASI fell from 9.8 at baseline to 9.2 at 12 weeks. The mean change from baseline in the FA group was 4.4 vs. -0.6 in the placebo group (P < 0.05). Similar trends were observed in the changes in VAS and in the DLQI and differences between the groups were significant for both these parameters (P < 0.05). Few adverse effects were reported. CONCLUSIONS: This study suggests that supplementation with FA during long-term MTX treatment reduces the efficacy of MTX in the control of psoriasis. Due to the relatively small sample size and short duration of this study, no conclusions can be drawn regarding the possibility that FA may reduce the side-effects of MTX.     

Improvement in quality of life with infliximab induction and maintenance therapy in patients with moderate-to-severe psoriasis: a randomized controlled trial

BACKGROUND: Psoriasis has a well-documented, markedly negative effect on patient quality of life. OBJECTIVES: To evaluate the impact of long-term infliximab maintenance therapy on health-related quality of life (HRQoL) in patients with psoriasis. METHODS: The Dermatology Life Quality Index (DLQI) and 36-item Short Form Health Survey (SF-36) were administered as part of the pivotal double-blind, placebo-controlled efficacy and safety EXPRESS study of infliximab in chronic plaque psoriasis. In total, 378 patients with moderate-to-severe psoriasis were enrolled at 32 centres in Europe and Canada. Patients were randomized to receive either placebo or infliximab 5 mg kg(-1) induction at weeks 0, 2 and 6 followed by maintenance every 8 weeks; placebo patients crossed over at week 24 to receive the infliximab induction and maintenance regimen. RESULTS: At week 10, infliximab-treated patients had significantly greater improvement in DLQI scores (P < 0.001) and SF-36 physical and mental component summary scores (P < 0.001) than placebo-treated patients. Significant improvement (P < 0.001) was also seen in all eight SF-36 subscales, and was greatest for the "Bodily Pain" and "Social Functioning" scales. Significant improvement in HRQoL persisted with maintenance infliximab treatment at week 24 (P < 0.001), with patients achieving a Psoriasis Area and Severity Index score of 0 reporting the greatest benefit. Treatment-related HRQoL improvement remained substantial at week 50. CONCLUSIONS: Infliximab induction and maintenance regimens resulted in rapid, substantial, sustained and clinically meaningful improvement in both dermatology-specific and general quality of life indices in patients with psoriasis, with total clearance resulting in maximum improvement.     

Internalized stigma in psoriasis: A multicenter study

Internalized stigma is the adoption of negative attitudes and stereotypes of the society regarding a person's illness. It causes decreased self‐esteem and life‐satisfaction, increased depression and suicidality, and difficulty in coping with the illness. The primary aim of this study was to investigate the internalized stigma state of psoriatic patients and to identify the factors influencing internalized stigma. The secondary aim was to identify the correlation of internalized stigma with quality of life and perceived health status. This multicentre, cross‐sectional study comprised 1485 patients. There was a significant positive correlation between mean values of Psoriasis Internalized Stigma Scale (PISS) and Psoriasis Area and Severity Index, Body Surface Area, Dermatological Life Quality Index and General Health Questionnaire‐12 (P < 0.001 in all). Lower percieved health score (P = 0.001), early onset psoriasis (P = 0.016), family history of psoriasis (P = 0.0034), being illiterate (P < 0.001) and lower income level (P < 0.001) were determinants of high PISS scores. Mean PISS values were higher in erythrodermic and generalized pustular psoriasis. Involvement of scalp, face, hand, genitalia and finger nails as well as arthropathic and inverse psoriasis were also related to significantly higher PISS scores (P = 0.001). Our findings imply that psoriatic patients experience high levels of internalized stigma which are associated with psoriasis severity, involvement of visible body parts, genital area, folds or joints, poorer quality of life, negative perceptions of general health and psychological illnesses. Therefore, internalized stigma may be one of the major factors responsible from psychosocial burden of the disease.     

Efficacy of a far erythemogenic dose of narrow-band ultraviolet B phototherapy in chronic plaque-type psoriasis

The aim of the present study was to examine the effect of far erythemogenic dose of narrow-band ultraviolet B (NB-UVB; starting dose at 35% minimal erythematous dose [MED]) on clinical response by measuring the severity, extent of disease and the changes in quality of life. Fifty patients with chronic plaque-type psoriasis were enrolled. Therapy was held for 3 days a week. The severity of the disease was assessed based on the Psoriasis Area and Severity Index (PASI) score and Dermatology Life Quality Index (DLQI) scores. The percentage improvement of PASI at 30 sessions was 68.99%. The improvement in DLQI scores at 30 sessions was 79.67%. Pearson correlation coefficients showed that PASI scores were not correlated with DLQI scores at the beginning of treatment ( P  = 0.330, r  = 0.14), but after the 30th session of NB-UVB therapy improvements in quality of life were correlated ( P  < 0.05, r  = 0.399). Therefore, far erythemogenic dose of NB-UVB is considered to be effective treatment for plaque-type psoriasis in our patients. However, we cannot confirm that it is safer than higher MED starting dose in term of cumulative UV irradiation.     

Chronic actinic dermatitis developed during phototherapy for psoriasis

A patient with psoriasis vulgaris had been successfully treated with PUVA and UVB therapy. During maintenance phototherapy, he suddenly became photosensitive and developed eczematous eruption. Minimal response doses to UVB and UVA were extremely low--1.09 mJ/cm2 and 0.3 J/cm2, respectively. No chemical substances were identified as the responsible photosensitizer. The condition was diagnosed as chronic actinic dermatitis (CAD). PUVA therapy was unsatisfactory because it was not possible to administer an adequate dose of UVA. Oral cyclosporine, topical corticosteroid and sunscreen were used with beneficial therapeutic effects on psoriasis and CAD. As far as we know, the development of CAD during phototherapy has not been previously reported.     

Identification of psoriatic patients at risk of high quality of life impairment

Psoriasis is a systematic chronic disease with large influence on patients' quality of life (QoL). The aim of this study was to assess the QoL of patients with psoriasis using generic, dermatology‐specific and psoriasis‐specific instruments simultaneously, to investigate the relationships between dimensions or subscales of the questionnaires and to identify categories of patients at risk of a high QoL impairment. The study comprised 100 consecutive patients with psoriasis treated at the Department of Dermatology, Clinical Center “Zvezdara”, Belgrade, from January to December 2011. Three QoL questionnaires were administered: the EuroQol‐5D (EQ‐5D), the Dermatological Life Quality Index (DLQI) and the Psoriasis Disability Index (PDI). The Psoriasis Area and Severity Index was used in evaluating disease severity. According to our results the QoL of psoriatic patients was impaired (the overall DLQI and PDI scores were 10.5 ± 7.2 and 13.4 ± 8.7, respectively, while EQ visual analog scale score was 48.8 ± 25.1). The most predictive factor of QoL impairment was disease severity, followed by sole and nail involvement. Psoriatic arthritis and bleeding were also associated with impaired QoL. Significant correlations between the instruments used in this study were in the expected directions. Mainly strong and moderate significant correlations ranging 0.26–0.84 were seen between DLQI and PDI instruments. A detailed approach to QoL assessment may give to the dermatologist useful information that could be of help in identifying patients belonging to categories at risk of high QoL impairment due to psoriasis, thus guiding them in clinical practice.     

Tacrolimus ointment improves psoriasis in a microplaque assay

Tacrolimus (FK506) is an effective and well tolerated immunosuppressant used to prevent allograft rejection. We describe the evaluation of two tacrolimus ointment formulations for treatment of chronic plaque-type psoriasis. This was a microplaque assay with randomized, double-blind design. Sixteen patients (15 men, one woman, all white and 28-69 years old) with chronic plaque-type psoriasis participated. Six different ointments were applied to discrete microplaques, 17 mm in diameter, on a descaled psoriasis lesion: these were tacrolimus ointment with diisopropyl adipate as penetration enhancer, tacrolimus ointment without diisopropyl adipate, 0.1% betamethasone 17alpha-valerate ointment, 0.005% calcipotriol ointment and, as controls, the ointment bases for tacrolimus and betamethasone. Ointments were reapplied and the area was sealed every 2-3 days during the 14-day treatment period. After 7 and 14 days, erythema and infiltration were graded on a scale of 0-4, and superficial blood flow was measured with a laser Doppler flowmeter. Epidermal thickness was measured histologically at the end of treatment. Compared with the vehicle controls, sites treated with tacrolimus ointment (with or without penetration enhancer) showed a significant reduction in erythema and infiltration (P < 0. 001), a significant reduction in superficial blood flow (P < 0.01) and a significant decrease in epidermal thickness (P < or = 0.001). Results for betamethasone and calcipotriol, when compared with the vehicle controls, were similar. These results suggest that, under conditions of descaling and occlusion, tacrolimus ointment is effective in the treatment of psoriasis.     

Improvements in patient-reported outcomes in moderate-to-severe psoriasis patients receiving continuous or paused etanercept treatment over 54 weeks: the CRYSTEL study

Objective  To assess patient-reported outcomes (PRO) in patients with moderate-to-severe plaque psoriasis receiving continuous or paused etanercept treatment.
Methods  In a multicentre European open-label study, one group ( n  = 352) received continuous therapy: 25 mg subcutaneously (SC) twice weekly (BIW) throughout 54-weeks. The other group ( n  = 359) received paused therapy: 50 mg SC BIW (≤ 12 weeks) until response was adequate by Physician Global Assessment; after psoriasis returned, retreatment (25 mg BIW) was begun. PRO included the Dermatology Life Quality Index (DLQI), EuroQoL-5D (EQ-5D), Hospital Anxiety and Depression Scale (HADS), and the SF-36 Vitality subscale.
Results  At baseline, mean DLQI for patients in the continuous (12.8) and paused group (13.8), indicated significant quality-of-life impairment; mean EQ-5D utility scores were 0.65 and 0.66 for continuous and paused patients, respectively; 30.0% of continuous and 37.0% of paused patients had at least mild symptoms of depression; 40.2% and 48.6%, respectively, had at least mild symptoms of anxiety. At week 54, both groups showed statistically significant ( P  < 0.05) and meaningful improvement in DLQI and EQ-5D scores; improvements in HADS-D, HADS-A, and SF-36 vitality were also significant. Improvements in DLQI and EQ-5D were significantly greater in the continuous arm than the paused arm, but the differences were not meaningful. Differences between arms in HADS and SF-36 Vitality at week 54 were not significant.
Conclusions  At baseline, patients exhibited significant quality-of-life impairment. Both continuous and paused etanercept treatment provided improvements in PRO measures. Either regimen could be considered and care should be individualized.