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Background: Real-world data on health-related quality of life (HRQoL) in palmoplantar pustulosis (PPP) are scarce and few studies have analysed the generic HRQoL., Objectives: To assess HRQoL using the generic EQ-5D instrument and the Dermatology Life Quality Index (DLQI) instrument in PPP compared to plaque psoriasis., Methods: Cross-sectional data from PsoReg, the Swedish National Registry for Systemic Treatment of Psoriasis (2006-2021), were examined. The study included 306 patients with PPP, out of which 22% had concomitant plaque psoriasis ( n  = 68), and 7041 patients with plaque psoriasis only. EQ-5D and DLQI were compared between patients with PPP and patients with plaque psoriasis, overall and stratified by sex. A subgroup analysis compared outcomes for patients with PPP vs. patients with severe plaque psoriasis (Psoriasis Area and Severity Index ≥10). Multiple regression analyses were performed to control for potential confounders (age, sex, comorbidities, lifestyle factors)., Results: Patients with PPP were to a larger extent female (79% vs. 37%, p  < .01) and older (mean [SD] age 59.9 [11.9] vs. 50.7 [16.0] years, p  < .01) than patients with plaque psoriasis. EQ-5D values were significantly lower (worse) in patients with PPP (mean [SD] 0.622 [0.309]) compared to patients with plaque psoriasis (mean [SD] 0.715 [0.274]). No significant difference was observed compared to patients with severe plaque psoriasis ( p  = .237). DLQI was comparable in PPP and plaque psoriasis patients ( p  = .117). In the regression analyses, PPP only and PPP with plaque psoriasis were associated with lower EQ-5D values of 0.065 ( p  < .01) and 0.061 points ( p  < .10) compared to plaque psoriasis patients., Conclusions: PPP had a substantial negative impact on patients' generic and dermatology-specific HRQoL. Patients with PPP were worse off in terms of generic HRQoL compared with patients with plaque psoriasis when controlling for the impact of potential confounders.

Background: Real-world data on health-related quality of life (HRQoL) in generalized pustular psoriasis (GPP) are scarce and studies have been restricted in terms of instruments used for assessments., Objective: To assess generic and dermatology-specific HRQoL of patients with GPP compared with patients with plaque psoriasis using real-world data from the Swedish National Register for Systemic Treatment of Psoriasis., Methods: Cross-sectional data from 2006 to 2021 including 7041 individuals with plaque psoriasis without GPP and 80 patients with GPP, of which 19% also had plaque psoriasis. Total scores for the EuroQol-5 Dimensions (EQ-5D) and Dermatology Life Quality Index (DLQI), as well as degree of severity within the instruments' dimensions/questions, were compared between patient groups., Results: EQ-5D scores were significantly ( p  < .01) lower (worse) in patients with GPP (mean [standard deviation (SD)] 0.613 [0.346]) vs. patients with plaque psoriasis (mean [SD] 0.715 [0.274]), indicating lower generic HRQoL of patients with GPP. Significantly ( p  < .01) higher (worse) total DLQI scores were observed for patients with GPP (mean [SD] 10.6 [8.9]) compared with patients with plaque psoriasis (mean [SD] 7.7 [7.1]), with proportionally more patients with GPP having severe (20% vs. 16%) and very severe (17% vs. 8%) problems. The worsened scores for GPP vs. plaque psoriasis were consistent across EQ-5D dimensions and DLQI questions., Conclusions: Individuals with GPP have a considerable impairment in both generic and dermatology-specific HRQoL. The HRQoL was significantly worse in individuals with GPP compared to individuals with plaque psoriasis. The significant HRQoL impairment of GPP shows the potential value of better healthcare interventions for this multisystem disease.

Background: Although stress is considered to be a negative factor for psoriasis, no convincing scientific evidence of this association exists, largely because of difficulties in measuring stress. Stress resilience is the ability to cope with and adapt to stressful events. Stress resilience can be measured in a standardized way and used as a marker for chronic stress., Objectives: The objective of this study is to investigate whether low stress resilience in adolescence increases the risk for onset of psoriasis and psoriatic arthritis later in life., Methods: A cohort of Swedish men (mean age 18.3 years), enrolled in compulsory military service between 1968 and 2005, was created using data from the Swedish Military Service Conscription Register (n = 1,669,422). Stress resilience at conscription was estimated using standardized semi-structured interviews, and was divided into three categories: low, medium and high. The men were followed from conscription until new-onset psoriasis or psoriatic arthritis, death or emigration or at the latest until 31 December 2019. Cox regression models adjusted for confounders at conscription were used to obtain hazard ratios (HRs) with 95% confidence intervals (CIs) for incident psoriasis and psoriatic arthritis., Results: Men in the lowest stress resilience category had an increased risk of psoriasis and psoriatic arthritis (HR 1.31 (95% CI 1.26-1.36) and 1.23 (95% CI 1.15-1.32), respectively), compared with those in the highest stress resilience category. When including only hospitalized patients the HRs for psoriasis and psoriatic arthritis in the lowest stress resilience group were 1.79 (1.63-1.98) and 1.53 (1.32-1.77), respectively., Conclusions: This large, prospective register study suggests that low stress resilience in adolescence is associated with an increased risk of incident psoriasis among men. The results indicate that patients with psoriasis have an inherent psychological vulnerability, and highlight the importance of addressing psychological well-being in the management of psoriasis., (© 2024 The Authors. Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.)

Background: The reported prevalence of depression among individuals with psoriasis varies substantially, and the effect of gender on depression distribution has revealed conflicting results. In addition, using medication to identify cases is uncommon., Objective: To study the prevalence of pharmacologically treated depression among individuals with and without psoriasis in a Swedish population using ICD-10 codes and data from the Swedish Prescribed Drug Register., Methods: A retrospective case-control population-based study was performed including all living individuals (age ≥18 years) in Region Jönköping, southern Sweden (n = 273,536). ICD-10 codes for the diagnosis of psoriasis (L40.*) and depression (F32.* and F33.*), and data on pharmacological treatment from the Swedish Prescribed Drug Register, were extracted from electronic medical records between April 9, 2008 and January 1, 2016. The extraction date was January 1, 2016., Results: The risk of pharmacologically treated depression was increased in individuals with psoriasis (age- and sex-adjusted OR 1.55; CI 1.43-1.68); 21.1% of women with psoriasis received pharmacological treatment for depression during the study period compared to 14.2% in the control population. Prevalence figures for depression were significantly higher in women with psoriasis compared to men. The risk of suffering from depression was highest among male and female patients with psoriasis under the age of 31 years., Conclusions: Depression is common among patients with psoriasis. The results of the current study underline the need for dermatologists to adopt a holistic approach, looking beyond the skin, when handling patients with psoriasis in every-day clinical practice., (© 2020 The Author(s) Published by S. Karger AG, Basel.)

Psoriasis (skin psoriasis, PsO) is a chronic inflammatory condition. In about one-third of cases, the joints are affected (psoriatic arthritis, PsA). Both conditions, especially PsA, profoundly impact patients' health-related quality of life (HRQoL). To describe the impact of psoriasis on HRQoL and patients' contact with the healthcare system in Sweden, Denmark, and Norway, the NORdic PAtient survey of Psoriasis and Psoriatic arthritis (NORPAPP) asked 22,050 adults randomly selected in Sweden, Denmark and Norway if they had psoriasis. 1264 individuals who reported physician-diagnosed PsO/PsA were invited to the full survey; 1221 responded (74.6% diagnosed with PsO alone; 25.4% with PsA ± PsO). Respondents with PsA most frequently consulted a rheumatologist; however, 14.3% had never seen a rheumatologist. Respondents with PsO alone most frequently consulted a general practitioner and 10.7% had never seen a dermatologist (although those with severe symptoms visited dermatologists more often). Negative impacts on HRQoL were reported by 38.1% of respondents with PsO [mostly limitations on clothing (22.6%), sleep disorders (16%), and depression/anxiety (16%)] and by 73% of respondents with PsA [mostly limitations on clothing (41.8%), sports/leisure (44.0%), or daily routine (45.1%) and sleeping disorders]. Absence from work/education was more common with PsA ± PsO (51.9%) than PsO alone (15.1%). In this survey in Sweden, Denmark, and Norway, the impact of psoriasis on the respondents' HRQoL was profound and was greater for PsA than for PsO, as was sickness absence. Sleeping disorders and depression were common and should not be overlooked.

Optimal clinical management of psoriasis and psoriatic arthritis (PsA) Optimal clinical management of psoriasis and psoriatic arthritis (PsA) requires understanding of the impact on patients. The NORdic PAtient survey of Psoriasis and PsA (NORPAPP) aimed to obtain current data on disease prevalence and patient perceptions in Sweden, Denmark and Norway. Among 22,050 individuals questioned, the reported prevalence of psoriasis and/or PsA was 9.7% (5.7% physician-diagnosed plus 4.0% self-diagnosed only); prevalence was similar in Sweden (9.4%) and Denmark (9.2%) but significantly higher in Norway (11.9%). Of those reporting a physician's diagnosis, 74.6% reported psoriasis alone, 10.3% PsA alone and 15.1% both. Patients with PsA perceived their disease to be more severe than those with psoriasis; patients with PsA and psoriasis reported greater disease severity than those with each condition alone. Patient's perceptions of psoriasis severity correlated weakly (Spearman's rho 0.42) with clinical severity; both patient perceptions and clinical measures are important in the assessment and management of psoriasis.

Background: Few studies have analysed the long-term effects of biological treatment in psoriasis. PsoReg, the Swedish national register for systemic psoriasis treatment, started in 2006 and now includes 10 years of real-world data on the effectiveness of biological treatment., Objectives: To analyse the long-term real-world outcome data of patients who are biologically naïve with moderate-to-severe psoriasis after switching to biological treatment., Methods: An observational study of patients who are biologically naïve with at least one registration of outcome before switching to biological treatment while included in PsoReg and at least one follow-up visit. Psoriasis Area and Severity Index (PASI), Dermatology Life Quality Index (DLQI) and EuroQol-5D (EQ-5D) values were analysed at 3-5 months, 6-11 months and at least once after ≥ 1 year, up to 9 years after the switch to biological treatment., Results: In total, 583 patients fulfilled the inclusion criteria. Of these, 399, 395 and 373 patients had observed outcome data beyond 1 year on the PASI, DLQI and EQ-5D, respectively, and 164, 168 and 152, respectively, were observed in at least three time periods after the switch. Significant (P < 0·01) improvement in PASI, DLQI and EQ-5D scores was observed 3-5 months after the switch and sustained under the whole observation period. The mean PASI, DLQI and EQ-5D changed from 13·5 ± 9·1, 9·0 ± 8·1 and 0·74 ± 0·22, respectively, before the switch, to 4·0 ± 3·5, 3·7 ± 4·7 and 0·79 ± 0·21, respectively, 1-5 years after the switch., Conclusions: Biological treatment, as used in clinical practice, shows a stable long-term effectiveness in all the measured dimensions, PASI, DLQI and EQ-5D., (© 2017 British Association of Dermatologists.)

Background: Assessing the impact of disease severity on generic quality of life (QOL) is a critical step in outcomes research and in the development of decision-analytic models structured around health states defined by clinical measures. While data from routine clinical practice found in healthcare registers are increasingly used for research, more attention should be paid to understanding the relationship between clinical measures of disease severity and QOL. The purpose of this work was therefore to investigate this relationship in psoriasis using a population-based dataset., Methods: Severity was measured by the Psoriasis Area and Severity Index (PASI), which combines severity of erythema, induration, and desquamation into a single value ranging from 0 to 72. The generic EQ-5D-3L utility instrument, under the UK tariff, was used to measure QOL. The association between PASI and EQ-5D-3L was estimated using a population-based dataset of 2674 patients with moderate to severe psoriasis enrolled over ten years in the Swedish psoriasis register (PsoReg). Given the repeated measurement of patients in the register data, a longitudinal fixed-effects model was employed to control for unobserved patient-level heterogeneity., Results: Marginal changes in PASI are associated with a non-linear response in EQ-5D-3L: Moving from PASI 10 to 9 (1 to 0) is associated with an increase of 0.0135 (0.0174) in EQ-5D-3L. Furthermore, unobserved patient-level heterogeneity appears to be an important source of confounding when estimating the relationship between QOL and PASI., Conclusions: Using register data to estimate the impact of disease severity on QOL while controlling for unobserved patient-level heterogeneity shows that PASI appears to have a larger impact on QOL than previously estimated. Routine collection of generic QOL data in registers should be encouraged to enable similar applications in other disease areas., Trial Registration: Not applicable.

Biological drugs are expensive, but can reduce symptoms and increase quality of life for patients with psoriasis. The aim of this study was to examine quality of life, disease severity and treatment satisfaction in Danish, Finnish and Swedish patients with psoriasis. Based on 12 months' data from patient surveys and chart reviews, 3 treatment groups were identified: topical, systemic and/or biological <12 months, and biological for 12 months. Regression analyses were performed to investigate influence on treatment satisfaction, disease problems and quality of life. Patients treated with biological drugs for 12 months showed the highest treatment satisfaction and the lowest Dermatology Life Quality Index score. A number of patients with topical treatment reported low quality of life, severe or very severe disease problems, and low treatment satisfaction. Some patients with psoriasis may be under-treated and might benefit from a more aggressive treatment strategy. It is important, however, that resource utilization is optimized and patients are not treated with more advanced agents than necessary.

Background: Although clinical studies have shown efficacy of biological agents in moderate to severe psoriasis, observational studies of real-world effectiveness are rare., Objective: To analyse the psoriasis area and severity index (PASI) and quality of life by the EQ-5D questionnaire and dermatology quality of life index (DLQI) in psoriasis patients who switched from conventional systemic treatment to biological agents in clinical practice. Furthermore, to analyse patient groups with the highest benefit of biological agents., Methods: Longitudinal, observational study based on the Swedish National Registry for Systemic Treatment of Psoriasis, PsoReg. Outcomes of biological-naïve patients who switched to a biological agent (n = 267) were analysed before switch and at the first follow-up., Results: Patients significantly improved in EQ-5D, DLQI and PASI (p < 0.001). Patients with DLQI ≥10 and/or PASI ≥10 had the greatest benefits from biological agents in terms of EQ-5D., Conclusions: Patients with moderate to severe psoriasis benefit from biological agents in clinical practice; the patients with the highest benefits were those with high pretreatment PASI and DLQI scores., (Copyright © 2013 S. Karger AG, Basel.)

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., (© 2011 Wiley Periodicals, Inc.)

Patient registries often lack indicators of the disease as experienced by patients, e.g. treatment satisfaction and self-assessed disease severity. There is scarce information about the relationship between these assessments and currently existing instruments used in treatment evaluation. Our objective was to explore the importance of these indicators among patients with psoriasis in Finland and Sweden, in relation to treatment patterns and current measures of health-related quality of life. Data were collected from a patient survey and a retrospective chart review for 273 patients over 12 months. To assess psoriasis treatment completely, it is necessary to consider the impact of the disease on the patient in terms of treatment satisfaction, disease severity and health-related quality of life. The individual disease burden on patients should play a central role in formulating treatment goals. Clinician- and patient-based perspectives of the overall impact of psoriasis can assist clinical decision-making and evaluations of treatments.

Objective: The Psoriatic Arthritis Quality of Life (PsAQoL) questionnaire is the first disease-specific patient-derived instrument for assessing QoL in patients with PsA and has been extensively validated in this population. The aim of the adaptation process reported here was to develop a Swedish version of the PsAQoL that was equivalent to, and met the same psychometric and acceptability standards as, the original instrument, which was developed in the UK., Method: Translation of the original questionnaire into Swedish was performed by a professional and a lay panel. Field testing for face and content validity was performed by interviewing 13 patients. Finally, 123 patients with PsA were included in a test-retest postal survey designed to test reproducibility and construct validity. The PsAQoL was administered on two occasions approximately 2 weeks apart. The Nottingham Health Profile (NHP) was used as a comparator instrument., Results: The Swedish version of the PsAQoL questionnaire showed good reliability at both time points and, as expected, correlated with the NHP. The scale was able to distinguish between groups based on self-reported general health and flare-up. Patients with active symptoms of both arthritis and psoriasis had worse QoL. The results also indicated that duration of disease has a progressive impact on PsAQoL scores., Conclusions: This study provides evidence that the adapted PsAQoL can be used for clinical studies in Swedish patients. The instrument provides valuable information on the long-term effects of PsA on QoL.

In this study, the authors aimed at a sociological approach to the individual's everyday life with psoriasis and to this end conducted qualitative interviews with 18 persons from a county in northern Sweden. The most difficult aspects of living with psoriasis were being marked by the visibility of psoriasis, especially in the younger ages, and the visibility of joint changes. Therefore, those with both rashes and joint changes felt marked and discredited in a twofold way. Commonly used coping strategies were routinization of both the treatment and the adjustment to the marking process, and acceptance, and these strategies developed with age. Most participants experienced a good quality of life but still could find nothing positive about psoriasis. The authors suggest efforts toward increased awareness among health care professionals of the marking process and future qualitative studies about experiences of psoriasis during adolescence.

The aim of this study was to assess possible determinants of quality of life in psoriasis patients in northern Sweden, and to analyse the association between these determinants and quality of life. A questionnaire was mailed to 1,707 subjects, resulting in a response rate of 74%. The study is therefore based on 1,060 subjects, since 195 denied having psoriasis. Quality of life was measured using a version of the Dermatology Life Quality Index. The extent of the disease was estimated using the patients' sketches. The association between determinants and quality of life was calculated in a risk analysis using logistic regression. Large disease extent and joint symptoms were the strongest indicators for impaired quality of life. Other indicators were withdrawal from medical treatment due to distance to treatment facilities, which strongly influenced the quality of life and choice of treatment.

The impact of skin diseases on health-related quality of life is considerable. It is important to quantify the patient's perspective of the severity of their disease. Health-related quality of life was measured in 366 patients with skin diseases attending the dermatology outpatient clinic in Uppsala, Sweden, from November 1996 to December 1997, with 1 generic (SF-36) and 1 disease-specific (DLQI) health-related quality of life instrument, and a subjective measure of disease activity. The SF-36 mean scores were below those of the age- and gender-matched general population in Sweden. No difference in health-related quality of life was found between men and women or between patients with atopic dermatitis and psoriatic patients. However, patients with psoriatic arthritis had significantly poorer health-related quality of life than both patients with atopic dermatitis and psoriatic patients. The estimated correlations between the instruments were in the expected direction and mostly significant. The results confirm that skin diseases have an adverse impact on patients' health-related quality of life.

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.