scholarly journals IMPROVE 1.0: Individual Monitoring of Psoriasis Activity by Regular Online App Questionnaires and Outpatient Visits

2021 ◽  
Vol 8 ◽  
Author(s):  
Natalie Garzorz-Stark ◽  
Sarah Beicht ◽  
Veronika Baghin ◽  
Sebastian P. Stark ◽  
Tilo Biedermann ◽  
...  

Smartphone apps gain more and more importance in supporting management of chronic diseases. Psoriasis is a highly prevalent, lifelong chronic inflammatory skin disease with a high impact on patient's quality of life. Disease management includes regular topical and systemic treatment of skin lesions as well as co-treatment of metabolic and psychologic disorders. In this study, we investigated the potential of a new smartphone app (IMPROVE 1.0) for individual monitoring of disease activity and disease influencing factors. Twelve out of 50 psoriasis patients asked for study participation performed self-assessment of psoriasis severity, life quality, and stress scores using the app over a period of 1 year. Every 2 months, study participants were carefully examined by a dermatologist in order to control the quality of app-reported data. We found that psoriasis severity and life quality values as entered in the app closely correlate to physician's examination. Furthermore, we detected strong correlations of disease activity with life quality and psoriasis serum biomarker. Temporal relations between psoriasis aggravation and previous changes of lifestyle factors, such as increased stress levels, were observed in individual patients, indicating a high potential for preventive interventions in future psoriasis apps. The vast majority of study participants evaluated IMPROVE 1.0 app positively and wish to include the app into their daily life. Hence, we demonstrate that smartphone apps are a useful tool to raise self-awareness for the dimensions of complex diseases and fully integrate psoriasis patients into individual disease management. These data are important to develop more advanced digital tools supporting the management of chronic diseases in the future.

2021 ◽  
Vol 20 ◽  
pp. 160940692110167
Author(s):  
Snæfrídur Thóra Egilson ◽  
Linda B. Ólafsdóttir ◽  
Anna Sigrún Ingimarsdóttir ◽  
Freyja Haraldsdóttir ◽  
Ásta Jóhannsdóttir ◽  
...  

The LIFE-DCY research project has two aims. First, to evaluate disabled children’s quality of life (QoL) as reported by themselves and their parents, and second, to locate commonalities, differences, and conflicting issues in the processes that may influence disabled children’s life quality and participation. This paper describes the study design, methodology, and methods along with lessons learned. In addition various methodological and ethical concerns are raised. A sequential mixed-methods design was applied. In Phase one (mapping) we used KIDSCREEN-27 to study how disabled children evaluate their QoL compared with the perspectives of their parents and those of non-disabled children and their parents. Using the Participation and environment measure we also studied parents’ perspectives of their children’s participation in different social contexts. Altogether 209 disabled children and their parents, and 335 children in a control group and their parents (paired reports) participated in phase one. Phase two (unpacking) consisted of 14 case studies with disabled children aged 8–18 years and focus groups with 21 disabled people aged 19–35 years. The initial analysis was inductive and data-oriented. We then used critical and transformative lenses to shed light on how meaning was made of life quality and participation in relation to the context in which study participants found themselves. The LIFE-DCY research promotes an understanding of how important aspects of life quality and participation may intersect within different contexts and at different times. The theoretical understandings from this study may also help unpack various aspects of childhood disability in terms of knowledge and power and enhance understandings of how ideas about normality and childhood disability are constructed.


2021 ◽  
pp. 1-17
Author(s):  
Karsten Vrangbæk

Abstract Chronic diseases are major causes of death and reduction in the quality of life worldwide, and their prevalence is expected to rise due to changing demographics. Disease management programmes (DMPs) have been presented as a policy response to challenges of care coordination for such chronic diseases. This paper investigates the implementation of DMPs in a National Health Care system in the Nordic region using type II diabetes as an example. DMPs are detailed descriptions of the sequence and responsibilities for diagnostic, treatment, rehabilitation and prevention procedures. The paper applies a systemic implementation perspective to provide detailed analysis of implementation progress, issues and concerns. The implementation analysis shows that the framework of DMP has facilitated the development of new practices and attention to the roles that each of the stakeholders are playing within the service delivery. Many new initiatives contribute to improved coordination and overall management of the Type 2 diabetes (T2DB) population. Yet, there are also several cross-cutting challenges that are affecting the implementation process.


2016 ◽  
Vol 76 (1) ◽  
pp. 203-207 ◽  
Author(s):  
Vibeke Strand ◽  
Philip Mease ◽  
Laure Gossec ◽  
Ori Elkayam ◽  
Filip van den Bosch ◽  
...  

ObjectiveTo evaluate the effect of secukinumab on patient-reported outcomes (PROs) in subjects with active psoriatic arthritis (PsA) in the FUTURE 1 study.MethodsSubjects were randomised 1:1:1 to receive intravenous (i.v.) secukinumab 10 mg/kg at weeks 0, 2 and 4 followed by subcutaneous secukinumab 150 or 75 mg every 4 weeks or matching placebo until week 24.ResultsAt week 24, subjects receiving secukinumab i.v.→150 mg or i.v.→75 mg reported greater least squares mean changes from baseline than those receiving placebo in patient global assessment of disease activity (−20.6 and −20.0 vs −7.4, respectively), patient assessment of pain (−20.8 and −20.4 vs −6.7), psoriatic arthritis quality of life (−3.5 and −3.2 vs −0.4), Dermatology Life Quality Index (−8.8 and −7.9 vs 0.7); p<0.0001 vs placebo for both secukinumab groups for above PROs and Functional Assessment of Chronic Illness Therapy-Fatigue (6.74 (p<0.05 vs placebo) and 6.03 vs 4.00); all of which well exceeded minimum clinically important differences.ConclusionsIn subjects with PsA, secukinumab treatment resulted in clinically meaningful improvements in global disease activity, pain, generic and disease-specific measures of health-related quality of life and fatigue.Trial registration numberNCT01392326; Results.


2021 ◽  
Vol 12 ◽  
pp. 215013272110121
Author(s):  
Wonkyung Lee ◽  
Euna Han ◽  
Junjeong Choi

Background: The high prevalence of chronic diseases has been an ongoing public concern. The psychological factors, including lack of social support and perceived lack of control, were found to be highly associated with an increased risk of the diseases. In fact, the effect of disease management programs (DMP) in patients diagnosed with chronic diseases were assessed in multiple studies to measure health-related quality of life (HR = QoL), which measured in the EuroQol 5-Dimension Questionnaire (EQ-5D) index score, also known as self-perceived health. Methods: The study was conducted using the Korea National Health and Nutrition Examination Survey (KNHANES) from 2007 to 2012 and through descriptive statistics and multiple linear regression to investigate the association of participation in DMP and the EQ-5D index score. Results: The results revealed that the subjects diagnosed with hypertension were shown to have a lower quality of life to those without the diagnosis ( P < .05). Moreover, in the hypertensive Korean population, DMP did not show any statistically significant impact on the EQ-5D index score ( P > .05). Conclusion: Our study has assessed the association of DMP and EQ-5D index score in hypertensive patients only although it is still uncertain the effect of DMP on other chronic diseases therefore, further studies should be conducted to investigate the importance of DMP in Korea for the patients with such diseases in improving their quality of life.


Author(s):  
Anna Karpińska-Mirecka ◽  
Joanna Bartosińska ◽  
Dorota Krasowska

Psoriasis, a chronic disease, is associated with a higher prevalence of comorbidities and has negative impact on health-related quality of life (HRQOL). The objective was to investigate the effect of comorbidities on HRQOL, and psoriasis severity measured appropriately by the dermatology life quality index (DLQI) and the psoriasis area severity index (PASI) before, and after a 3-month treatment and the median DLQI or PASI reduction from baseline in the adult psoriatic patients receiving various types of treatment. The study included 184 adult plaque psoriatic patients. DLQI and PASI scores were assessed in the studied patients before the therapy (a baseline visit) and after a 3-month treatment (a control visit) depending on the presence of comorbidities. Psoriatic patients with comorbidities had worse HRQOL and more severe skin lesions. The presence of comorbidities had a negative effect on the outcome of treatment with the use of conventional therapy. The outcome of therapy with biological agents was independent of each of the analyzed factors. Biological treatment had a high effectiveness on the psoriatic skin lesions improvement despite the presence of comorbidities, whereas methotrexate was effective even if the patients had co-existing hypertension. In psoriatic patients receiving systemic conventional treatment but not biological treatment, comorbidities had a negative impact on HRQOL and psoriasis severity.


2021 ◽  
Vol 12 ◽  
Author(s):  
Jiangluyi Cai ◽  
Lian Cui ◽  
Yu Wang ◽  
Ying Li ◽  
Xilin Zhang ◽  
...  

Psoriasis is a chronic inflammatory disease characterized by erythematous scaly plaques, accompanied by systemic damage that leads to the development of multiple comorbidities. In particular, the association between psoriasis and cardiometabolic comorbidities, including cardiovascular diseases (CVDs), obesity, diabetes mellitus, and metabolic syndrome, has been verified in a considerable number of clinical trials. Moreover, the increased risk of cardiometabolic comorbidities positively correlates with psoriasis severity. Biologic therapy targeting inflammatory pathways or cytokines substantially improves the life quality of psoriasis patients and may affect cardiometabolic comorbidities by reducing their incidences. In this review, we focus on exploring the association between cardiometabolic comorbidities and psoriasis, and emphasize the benefits and precautions of biologic therapy in the management of psoriasis with cardiometabolic comorbidities. The pathogenic mechanisms of cardiometabolic comorbidities in psoriasis patients involve common genetic factors, lipid metabolism, insulin resistance, and shared inflammatory pathways such as tumor necrosis factor-α and interleukin-23/Th-17 pathways.


Author(s):  
Amit Bahuguna ◽  
Saurabh Mahajan ◽  
Arun K. Yadav ◽  
Aradhana Sood ◽  
Sumit Lathwal

Background: Endogenous eczemas have a significant effect on quality of life of patients and is a huge burden on healthcare. There is evidence that external factors play an important role in endogenous eczemas. The study was conducted to evaluate the role of patch test in endogenous eczemas and to identify any causal or aggravating allergen, the avoidance of which could augment response to standard therapy and prevent relapse.Methods: Four groups of 27 patients each, with clinical diagnosis of one of the major endogenous eczema namely, Atopic dermatitis, nummular eczema, pompholyx and seborrhoeic dermatitis satisfying the inclusion and exclusion criteria were included in the study. Demographic and clinical details were recorded and were patch tested with the Indian standard patch test battery. Dermatology life quality index (DLQI or children’s DLQI) was used at the presentation and after 03 months to assist in assessing the subjective improvement after avoidance of the agents incriminated by the patch test. Results: Of the 108 study participants, 61 (56.5%) patients had one or more positive results in the study, with maximum 21 (77.8%) in pompholyx and minimum of only 10 (37%) in patients of seborrhoeic dermatitis group. About, 36 (33.3%) patients had no change and 05 (4.6%) had worsening of their eczema.Conclusions: We found positive outcome in the form of clinical improvement or cure following the avoidance of allergens implicated by patch testing. This study recommends inclusion of patch test in the management protocol of endogenous eczemas.


2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S287-S288
Author(s):  
S Hamdi ◽  
W Ben Ameur ◽  
A Hammami ◽  
N Elleuch ◽  
W Dahmani ◽  
...  

Abstract Background Perianal manifestations of Crohn’s disease considerably affects the life quality of patients. This study aims to assess the quality of life of patients with perineal Crohn’s disease by using the SIBDQ (Short Inflammatory Bowel Disease Questionnaire) and to evaluate its correlation with the Perineal Disease Activity Index (PDAI). Methods We retrospectively reviewed the medical records of patients with perineal Crohn’s disease between January 2018 and December 2020. Patients with active luminal disease were not included in this study (Crohn’s Disease Activity Index (CDAI) &gt; 150). All participants answered the SIBDQ. Active perineal disease was defined as a PDAI &gt; 7. We studied the correlation between SIBDQ and PDAI. Patients were divided into 2 groups according to the duration of the disease greater or less than 5 years. SIBDQ and PDAI were compared between the 2 groups. Results We included 52 patients with a mean age of 37 years (range: 17–62 years). There were 34 males (65.4%) and 18 females (34.6%). Crohn’s disease has been diagnosed for 7.6 years in average (range 2–19 years). The PDAI varied from 1 to 15 (average=7) and the SIBDQ ranged from 11 to 66 (average= 41). The SIBDQ was inversely correlated to the PDAI with a Pearson’s correlation coefficient equal to -0.885 (p=0.01). Indeed, the SIBDQ score for patients with an active perineal disease was significantly lower than those with inactive one (28.3 ± 11.6 vs. 50.1 ± 7.7; p&lt; 0.0001), which indicates a worse life quality. Comparing the 2 groups, there were no significant differences in terms of age, gender and PDAI. The SIBDQ was lower in patients who had the disease for more than 5 years compared to the other ones (38.3 ±15.6 vs.48.2 ± 7.5; p=0.003). Conclusion The quality of life for patients with perineal Crohn’s disease seems to be altered by both activeness and duration of the disease. The SIBDQ is a simple tool that helps physicians detect patients with poor life quality. Other studies are necessary to validate this questionnaire for the evaluation of the quality of life in patients with perineal Crohn’s disease.


2021 ◽  
Vol 15 (11) ◽  
pp. e0009887
Author(s):  
Marília Brasil Xavier ◽  
Carla Andréa Avelar Pires ◽  
Cláudia Maria de Castro Gomes ◽  
Gabriela Fernandes Rodrigues ◽  
Débora Pinheiro Xavier ◽  
...  

Background Brazil remains endemic for infection by the human immunodeficiency virus (HIV) and leprosy, having a major impact on public health and the life quality of affected patients. Although the relevance of this co-infection is recognized, several aspects, such as the immune response, are not yet fully understood. The objective of this study was to investigate the expression of FOXP3+ Treg cells in leprosy skin lesions and to correlate their clinical forms, laboratory characteristics (CD4, CD8, and CV), and the immune reconstitution syndrome in HIV-leprosy co-infection. Methodology/Principal findings An observational, cross-sectional, and analytical study was carried out comparing four groups of patients: those with concomitant diagnosis of leprosy and HIV infection without a leprosy reaction, those with leprosy and HIV co-infection patients with a reverse reaction (RR), those with leprosy without HIV and without reaction, and those with leprosywithout HIV and with RR. The patients were diagnosed at a dermatology outpatient clinic located in Belém, Pará, Brazil, from 2003 to 2017. In the sample studied, there was a positive correlation between FOXP3+ cell density and viral load, negative correlation with blood CD4+ (not statistically significant), significant positive correlation in CD8 count in patients with leprosy reaction, and positive relationship in patients with IRIS. The density of cells expressing FOXP3 was higher in the BL/LL forms in patients without HIV, although the difference was not statistically significant. However, the cell mean was higher in the TT/BT forms in patients co-infected with leprosy and HIV, showing contradictory results. Conclusions/Significance These findings support that higher activity of the HIV may stimulate or result in a higher expression of FOXP3-Tregs and that they may be involved in active immunosuppression observed at the infection site at the tissue level. This supports the need to expand studies on FOXP3+ Treg cells in co-infected patients.


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