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.     

Quality of life and psychological status of patients with pemphigus vulgaris using Dermatology Life Quality Index and General Health Questionnaires

Pemphigus vulgaris with painful chronic blisters and/or erosions on skin and mucosa can impair quality of life (QOL). Therapeutic modalities in the long run can have additional negative impact. There are few studies that have focused on QOL of such patients except in treated cases. The aim of this study was to describe the effect of the disease per se on QOL before receiving treatment and evaluation of psychological status of the patients and its effect on their QOL. A total of 61 patients with newly diagnosed non-treated pemphigus vulgaris participated in the study. The Persian version of the Dermatology Life Quality Index (DLQI) questionnaire was used to evaluate their QOL and the 28-item General Health Questionnaire (GHQ-28) for their psychological status. In this study, the mean DLQI score was 10.9 ± 6.9. QOL was worse in patients with nasal and pharynx involvement, with positive Nikolsky sign, patients with severe skin involvement and those who showed the symptom of itching. There was a negative correlation between DLQI score and duration of the disease. More than 77% of patients experienced anxiety and depression with more impaired QOL. In conclusion, pemphigus vulgaris is responsible for great alteration in QOL, especially in its severe form. The disease in its initial stage may have greater impact on the QOL. The high probability of anxiety and depression in these patients and its negative effect on QOL should be taken into account in the management of these patients right from the start of the treatment.     

Japanese version of the Family Dermatology Life Quality Index: Translation and validation

Skin conditions affect the quality of life (QoL) of patients and their family. To assess family members' QoL, a questionnaire uniquely designed for family members is necessary. We translated the Family Dermatology Life Quality Index (FDLQI), originally created and validated by Basra et al., into Japanese, and evaluated its reliability and validity. For psychometric evaluations, 150 dermatology patients and their family members were included. The Japanese version of the FDLQI showed high test–retest reliability (intraclass correlation coefficient = 0.95) and internal consistency reliability (Cronbach's alpha = 0.86). FDLQI scores significantly correlated with DLQI scores (r = 0.58, P < 0.01, Spearman's rho) and global question (GQ) which measured the patient's skin condition on a visual analog scale (r = 0.36, P < 0.01). Family members of patients with inflammatory skin diseases showed higher FDLQI scores than those with isolated lesions, but the difference was not statistically significant (P = 0.062, Mann–Whitney U‐test). Responsiveness to change was demonstrated in a group in which the patient's skin condition was assessed as improved (n = 37, r = 0.46, P < 0.01) but not in that in which it became worse. The difference of the change between the two groups was statistically significant (P < 0.01). Additionally, the change in FDLQI scores and GQ were significantly correlated (r = 0.40, P < 0.01). Exploratory factor analysis suggested essential unidimensionality of the instrument. We showed acceptable validity and responsiveness of this Japanese version of FDLQI. Further clinical epidemiological studies are required to confirm this.     

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.     

A cross‐sectional study using the Children’s Dermatology Life Quality Index (CDLQI) in childhood psoriasis: negative effect on quality of life and moderate correlation of CDLQI with severity scores

Background Juvenile psoriasis is a chronic and incurable skin disease that affects approximately 0·7% of children. Objectives To achieve more insight into the quality of life (QoL) in childhood psoriasis and to investigate whether disease severity scores correlate with QoL scores. Methods All consecutive patients with juvenile plaque psoriasis (≤ 18 years old) who visited our outpatient department were included. At baseline, the Children’s Dermatology Life Quality Index (CDLQI) questionnaire was completed and disease severity was assessed by the Psoriasis Area and Severity Index (PASI) and the Physician Global Assessment (PGA). Results Thirty‐nine patients were included in the study. A median CDLQI of 6 [interquartile range (IQR) 5–9] was reported. Median PASI was 6·3 (IQR 3·3–8·2) and median PGA was 2 (IQR 1–3). The correlation coefficient between PASI and CDLQI was 0·47 (P = 0·003), whereas the correlation coefficient between PGA and CDLQI was 0·51 (P = 0·001). Conclusions The negative effect on QoL in juvenile psoriasis was confirmed in the largest cohort presented up to now. The correlation between disease severity scores and disease‐related QoL in children with psoriasis is only moderate. Therefore, both clinical outcome parameters (PASI, PGA) and measures of QoL (CDLQI) should be included in adequate, patient‐oriented clinical decision making.     

An audit of the impact of a consultation with a paediatric dermatology team on quality of life in infants with atopic eczema and their families: further validation of the Infants' Dermatitis Quality of Life Index and Dermatitis Family Impact score

BACKGROUND: Atopic dermatitis (AD) accounts for 10-20% of referrals to secondary care dermatology, often requiring multiple visits and occupying much valuable time and resources. OBJECTIVES: We audited the usefulness (ease of use, reliability and sensitivity to change) of two simple and easy to use quality of life (QoL) measures, the Infants' Dermatitis Quality of Life Index (IDQOL) and Dermatitis Family Impact (DFI), for assessing the impact on QoL of AD in infants and their families in a routine clinical setting. We also examined the impact of an initial consultation with a dermatology team on AD severity and QoL impairment from the parent's perspective. METHODS: The parents of 203 infants (mean age 19.8 months) with AD attending paediatric dermatology clinics completed the DFI and IDQOL. The parents of 50 of these infants completed both questionnaires before first and second consultations. RESULTS: In the 203 children the mean of both the IDQOL and DFI scores was 8.47 (median 8 and 7 and SD 5.8 and 6.5, respectively). The IDQOL and DFI correlated well (r(s) = 0.776, P < 0.0001). The parent's assessment of the global severity of AD correlated well with the IDQOL score (r(s) = 0.636, P < 0.0001) but less well with the DFI (r(s) = 0.394, P < 0.001). The highest-scoring IDQOL items were itching and scratching, problems at bathtime and time taken to fall asleep. The highest-scoring DFI items were tiredness/exhaustion, sleep loss and emotional distress. In both measures these domains also correlated most strongly with eczema severity. After dermatology consultation the median global severity score, rated by 50 parents, fell from 2 (SD 0.83) to 1 (SD 0.8; 95% confidence interval, CI 0.5-1), the median IDQOL score fell from 8 (SD 5.92) to 5.5 (SD 5.92; 95% CI 2-5.5) and the median DFI score fell from 9 (SD 6.45) to 3 (SD 6.56; 95% CI 2-5.5). In 50 infants the median IDQOL scores for those infants with global AD severity scores of 1, 2 and 3 were 5 (SD 5.65), 8 (SD 4.27) and 14 (SD 5.67), respectively and improved by 10%, 38% and 64%, respectively while the median DFI scores improved by 54%, 56% and 79%, respectively. The most improved IDQOL items were the time taken to get to sleep and difficulty at mealtimes and the most improved DFI domains were tiredness/exhaustion and emotional distress in the parents. CONCLUSIONS: We have provided further important information on the effects of AD on infants and their families using the IDQOL and DFI QoL measures. We demonstrate the usefulness of these measures in routine clinical management of AD and show the beneficial effect for both infants and parents of the initial consultation by a dermatology team in a secondary care setting.     

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.     

Quality of life, health-state utilities and willingness to pay in patients with psoriasis and atopic eczema

Skin diseases have been shown to have a significant adverse impact on the health-related quality of life of patients that may be underestimated by objective assessments of clinical severity. The main aim of this study was to measure the health-state utilities on a scale between 0 (dead) and 1 (full health) of patients with psoriasis and atopic eczema, and to measure the willingness to pay for a cure for psoriasis and atopic eczema. A second aim was to analyse how these measures are related to different dimensions of health-related quality of life, as measured by general and disease-specific quality of life instruments and a subjective measure of disability activity. This study was based on data from a questionnaire administered to, and interviews conducted with, 366 patients with psoriasis and atopic eczema aged 17-73 years, attending the dermatology outpatient clinic in Uppsala, Sweden from November 1996 to December 1997. The survey included: a rating scale question, a time trade-off question, a standard gamble question, a dichotomous choice willingness to pay question, a bidding-game willingness to pay question, a generic quality of life instrument (SF-36), a disease-specific quality of life instrument (the Dermatology Life Quality Index) and a subjective measure of disease activity (on a visual analogue scale). The mean health-state utility was 0.69 (rating scale), 0.88 (time trade-off) and 0.97 (standard gamble) for patients with psoriasis. The corresponding health-state utilities for patients with atopic eczema were 0.73, 0.93 and 0.98. On average, patients were willing to pay between 1253 and 1956 Swedish crowns (SEK) per month for a psoriasis cure and between SEK 960 and 1083 per month for an atopic eczema cure ($1 = SEK 8.25 and pound1 = SEK 13.23). The health-state utilities were related to SF-36, the Dermatology Life Quality Index and disease activity in the expected direction and the correlations were strongest for rating scale and weakest for standard gamble. The willingness to pay was correlated with the Dermatology Life Quality Index and disease activity, but not with SF-36. The study indicates that it is feasible to measure health-state utilities and willingness to pay in this patient population, and the sizeable willingness to pay suggests that skin diseases are associated with substantial reductions in quality of life.     

Demographic characteristics and health-related quality of life of patients with moderate-to-severe psoriasis: The VACAP study

BackgroundPsoriasis is associated with a deterioration in the health-related quality of life (HRQoL) of affected patients. The aim of this study was to assess the HRQoL of patients with moderate-to-severe psoriasis.MethodsA prospective observational study (the VACAP Study) was carried out in 123 centers in Spain with 1217 patients. Patients were evaluated at baseline (visit 1 [V1]) and again four months later (visit 2 [V2]). The severity of psoriasis was determined using the following indices: (i) Psoriasis Area and Severity Index (PASI) (score range 0–72, higher score indicates more severe disease), (ii) the body surface area (BSA) affected, and (iii) the Physicians Global Assessment (PGA) (range 1–7, higher score indicates more severe disease). Four questionnaires were used for the assessment of the HRQoL: (i) the Short-Form 36 quality-of-life questionnaire (SF-36) (score range 0–100, higher score indicates better HRQoL); (ii) Euroqol (EQ-5D) (range from 1 to 3, lower score indicates better HRQoL); (iii) Dermatology Life Quality Index (DLQI) (ranges 0–30; from best to worst HRQoL); and (iv) Psoriasis Disability Index (PDI) (ranges 0–45; higher score indicates better HRQoL).ResultsThe mean (SD) age of the patients was 45.11 (13.92) years at V1. The mean age at the onset of psoriasis was 26.08 (14.19) years. The majority of patients were female (61%) and were employed (68%). The mean PASI score was 13.24 (9.50) at V1 and 5.07 (6.03) at V2 (P < .001). Scores from the generic HRQoL questionnaires (EQ-5D, SF-36) showed significant improvement between visits in all dimensions measured (P < .001). The disease-specific questionnaires also revealed overall improvements in quality of life over time: the DLQI mean total score was 8.97 (7.28) at V1 and 4.76 (5.72) at V2 (P < .001), and the PDI mean total score was 9.24 (8.76) V1 and 4.88 (6.65) at V2 (P < .001). Multivariate analysis using PDI as the dependent variable showed that the principal factors related to HRQoL were severity of psoriasis as measured by PASI (P < .001), and gender (P = .048).ConclusionsThe principal factor related to HRQoL in patients with psoriasis is the severity of the disease.