Hidradenitis suppurativa: Wie die Partner von Betroffenen psychosozial beeinträchtigt werden

2021 ◽  
pp. 1-3
Author(s):  
Uwe Gieler
Keyword(s):  
Disease Severity ◽  
Social Life ◽  
Hidradenitis Suppurativa ◽  
Life Quality ◽  
Psychosocial Burden ◽  
Wide Range ◽  
The Family ◽  
The Mean ◽  
Moderate Effect

<b>Background</b>: Hidradenitis suppurativa is a debilitating disease related to a great psychosocial burden in affected patients and subsequently also people around them. Patients’ partners as caregivers may indirectly experience wide range of devastating effects of the disease on their emotional and social life. <b>Objective:</b> The purpose of this study was to determine the QoL impairment in HS patients’ partners and to identify its aspects that are affected the most. Correlation between QoL burden and disease severity, duration, sex, age and smoking was also assessed. <b>Methods:</b> A total of 50 HS sufferers were assessed according to disease severity and their partners’ QoL was determined using the Family Dermatology Life Quality Index questionnaire. <b>Results:</b> The mean FDLQI for patients’ partners was 8.7 ± 6.8 points, indicating generally a moderate effect of HS on their life. Quality of partners’ life correlated significantly with disease severity but no correlation was found according to other factors. <b>Conclusion:</b> Hidradenitis suppurativa is a highly psychologically devastating disease not only for patients but also for their partners. It occurred to diminish partners’ QoL mostly by increasing daily expenditure but also other problems were often reported. Clinicians should be aware of these psychosocial implications, in order to provide optimal therapy of HS affected families by a multidisciplinary specialized management addressing both, patients and their cohabitants simultaneously.

Trends in Hidradenitis Suppurativa Disease Severity and Quality of Life Outcome Measures: A Systematic Review (Preprint)

2021 ◽  
Author(s):  
Jalal Maghfour ◽  
Torunn Elise Sivesind ◽  
Cory A. Dunnick ◽  
Robert Paul Dellavalle
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Disease Severity ◽  
Outcome Measures ◽  
Hidradenitis Suppurativa ◽  
Life Quality ◽  
Clinical Score ◽  
Validity And Reliability ◽  
Patient Reported

BACKGROUND While there has been an increase in the number of randomized, controlled trials (RCTs) evaluating treatment efficacy for HS, instrument measurements of disease severity and quality of life (QoL) are varied, making compilation of data and comparison between studies a challenge for clinicians. OBJECTIVE The aim of this review is to evaluate trends in disease severity scales and patient reported outcome measures used in RCTs assessing treatment interventions among HS patients. METHODS A primary systematic literature review was conducted in August 2020. PubMed/MEDLINE, Embase, Web of Science, and Cochrane databases were used to identify all articles published from January 1964 to July 2020. The study was prospectively registered with PROSPERO (ID: 209582). Twenty-five articles were included in the systematic review. RESULTS Sartorius and modified Sartorius scores (n=8), and Hidradenitis Suppurativa Clinical score (HiSCs) (n=8) were the most commonly used instruments for disease severity. Participants’ pain, followed by Dermatology Life Quality Index (DLQI), were the most common QoL measures used in the reviewed studies. CONCLUSIONS Heterogeneity of data characterizing both the validity and reliability of existing outcome measures hinders interpretation and translation of the results from RCTs into clinical practice. Many of the QoL measures identified were not specific to HS and may not be representative of all factors impacting patients.

scholarly journals Quality of life in patients with vitiligo

2020 ◽  
Vol 6 (3) ◽  
pp. 388
Author(s):  
Neela V. Bhuptani ◽  
Pratik J. Parmar ◽  
Nilam K. Selot ◽  
Bharti K. Patel
Keyword(s):  
Quality Of Life ◽  
Dermatology Life Quality Index ◽  
Life Quality ◽  
Multidimensional Index ◽  
Progressive Loss ◽  
Significant Difference ◽  
The Mean ◽  
Moderate Effect ◽  
The Impact

<p class="abstract"><strong>Background:</strong> Vitiligo is an acquired disorder characterized by well circumscribed depigmented macules and patches that result from a progressive loss of functional melanocytes. In India and perhaps elsewhere also patients with vitiligo have severe psychological and social problems. Quality of life is multidimensional index of different social, behavioural and cultural factors. Different tools were developed for measuring quality of life focusing on different conditions and diseases. The dermatology life quality index (DLQI) questionnaire is designed for use in patients of age more than 16. It can be used to measure the impact of vitiligo on quality of life. To assess the dermatology specific quality of life in patients with vitiligo. To study impact of vitiligo on their quality of life.</p><p class="abstract"><strong>Methods:</strong> In this study 150 patients diagnosed with vitiligo during a 1-year period were included. DLQI was calculated for every patient.  <strong></strong></p><p class="abstract"><strong>Results:</strong> The mean DLQI score in our study was 6.14. There was a statistically significant difference in mean DLQI of unmarried as compared to married. There were no statically significant differences in other groups. Out of 150 patients of vitiligo, 3 (2%) patients had no effect, 66 (44%) patients had small effect, 69 (46%) patients have moderate effect, while 12 (8%) patient had very large effect of vitiligo on their quality of life.</p><p class="abstract"><strong>Conclusions:</strong> Vitiligo affects quality of life in majority of patients. So, it should be treated aggressively with various treatment modality along with proper counselling and psychological support.</p>

Child Diagnosis of Autism - How It Can Change the Family Life

2017 ◽  
Vol 5 (1) ◽  
pp. 498
Author(s):  
Maria Stănescu
Keyword(s):  
Early Intervention ◽  
Family Life ◽  
Social Life ◽  
Decisive Role ◽  
Autistic Children ◽  
Child Behaviors ◽  
High Quality ◽  
Child Diagnosis ◽  
The Family

The article is about the role of the family in the education and formation of children and, especially, in the life and development of autistic children. It describes the problems their family is facing and the need for counseling to parents with autistic children. The reaction to finding the diagnosis of autism varies from one family to another and may encounter a large variety: from disbelief, anger, guilt, helplessness, devastation, surprise, or even rejection of the child, to understanding and relief when finally the parents have an explanation for their child behaviors. Early intervention is important in psychological sustaining of the parent, as parent involvement in the recovery of the child with autism has a determinant role in his development and in ensuring a high quality of life of the child and the life of the hole family. The response to a child's autism diagnosis varies from one family to another. The family goes through a variety of disbelief, anger, guilt, helplessness, devastation, surprise, or even rejection of the child, to understanding and relief. Early intervention is very important in the psychological support of the parent. Because any change disturbs the family equilibrium. A diagnosis of autism changes not only the life of the diagnosed child, but also the life of family members. All the resources are focused on the need of the child. Although each parent is different, after diagnosing the child with autism, all parents are overwhelmed by confusion, shock and denial. Parents' feelings can be influenced by how their children's situation affects different aspects of life - it has an impact on service, on social life and all their personal life. If we look at the family as a system and when a disturbing factor appears, all parts of the system are affected. The involvement of parents in the recovery of the child with autism has a decisive role in its development and in ensuring a high quality of child's life and family life.

THE VALUE OF LOVE IN THE SYSTEM OF FORMATION OF THE PROFESSIONAL MATURITY OF THE EDUCATOR

2020 ◽  
Vol 1 (10(79)) ◽  
pp. 12-18
Author(s):  
G. Bubyreva
Keyword(s):  
Russian Federation ◽  
The State ◽  
Educational Process ◽  
Wide Range ◽  
The Family ◽  
The Russian Federation ◽  
The Government ◽  
The Individual ◽  
The Right

The existing legislation determines the education as "an integral and focused process of teaching and upbringing, which represents a socially important value and shall be implemented so as to meet the interests of the individual, the family, the society and the state". However, even in this part, the meaning of the notion ‘socially significant benefit is not specified and allows for a wide range of interpretation [2]. Yet the more inconcrete is the answer to the question – "who and how should determine the interests of the individual, the family and even the state?" The national doctrine of education in the Russian Federation, which determined the goals of teaching and upbringing, the ways to attain them by means of the state policy regulating the field of education, the target achievements of the development of the educational system for the period up to 2025, approved by the Decree of the Government of the Russian Federation of October 4, 2000 #751, was abrogated by the Decree of the Government of the Russian Federation of March 29, 2014 #245 [7]. The new doctrine has not been developed so far. The RAE Academician A.B. Khutorsky believes that the absence of the national doctrine of education presents a threat to national security and a violation of the right of citizens to quality education. Accordingly, the teacher has to solve the problem of achieving the harmony of interests of the individual, the family, the society and the government on their own, which, however, judging by the officially published results, is the task that exceeds the abilities of the participants of the educational process.  The particular concern about the results of the patriotic upbringing served as a basis for the legislative initiative of the RF President V. V. Putin, who introduced the project of an amendment to the Law of RF "About Education of the Russian Federation" to the State Duma in 2020, regarding the quality of patriotic upbringing [3]. Patriotism, considered by the President of RF V. V. Putin as the only possible idea to unite the nation is "THE FEELING OF LOVE OF THE MOTHERLAND" and the readiness for every sacrifice and heroic deed for the sake of the interests of your Motherland. However, the practicing educators experience shortfalls in efficient methodologies of patriotic upbringing, which should let them bring up citizens, loving their Motherland more than themselves. The article is dedicated to solution to this problem based on the Value-sense paradigm of upbringing educational dynasty of the Kurbatovs [15].

scholarly journals Efficacy of adalimumab in moderate to severe hidradenitis suppurativa: Real life data

2018 ◽  
Vol 10 (2) ◽  
Author(s):  
Aikaterini Kyriakou ◽  
Anastasia Trigoni ◽  
Nikiforos Galanis ◽  
Dimitrios Sotiriadis ◽  
Aikaterini Patsatsi
Keyword(s):  
Quality Of Life ◽  
Hidradenitis Suppurativa ◽  
Therapeutic Potential ◽  
Therapeutic Option ◽  
Real Life ◽  
Life Quality ◽  
Global Assessment Scale ◽  
Friedman's Test ◽  
Adalimumab Treatment

Hidradenitis suppurativa (HS) is a relapsing, inflammatory disease characterized by painful nodules, abscesses, sinuses track formation and scarring. HS has a great impact on patients’ quality of life and its treatment may be really challenging. Adalimumab provides a new therapeutic option for HS. Our aim was to assess the therapeutic potential of adalimumab on patients with HS based on the data from the daily clinical practice of an HS Outpatient Clinic. 19 patients with clinically evident moderate to severe HS, under adalimumab treatment for at least 24 week, participated in this observational, retrospective study. The Hidradenitis Suppurativa Physician’s Global Assessment scale, Modified Santorius scale and Dermatology Life Quality Index (DLQI) at baseline, week 4, week 12 and week 24 were retrieved from the records. Both Modified Santorius score and DLQI were significantly decreased during the weeks of evaluation (Friedman’s test; P < 0.001). The proportion of patients who achieved clinical response was 10.5% (n = 2) at week 4, 42.1% (n = 8) at week 12 and 63.2% (n = 12) at week 24. Treatment with adalimumab was linked with both clinical remission of HS and improvement of patients’ quality of life.

scholarly journals Reporting of Quality of Life in Clinical Trials of Biologics for Plaque Psoriasis: A Systematic Review

2018 ◽  
Vol 2 (5) ◽  
Author(s):  
Giselle Prado ◽  
Anna J Nichols ◽  
Mercedes Florez-White ◽  
Francisco Kerdel
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Clinical Trials ◽  
Plaque Psoriasis ◽  
Dermatology Life Quality Index ◽  
Quality Index ◽  
Life Quality ◽  
Risk Of Bias ◽  
The Mean

Background: Psoriasis is a chronic remitting and relapsing skin disease. For many patients, improved quality of life (QoL) is as important as clinical improvement of lesions.Objective: To review reporting of Dermatology Life Quality Index (DLQI) in randomized controlled trials (RCTs) of biologics for adult patients with plaque psoriasis.Methods: A systematic review was conducted in 4 databases for RCTs that measured DLQI at baseline and endpoint. A data collection form was created for collecting study variables. Risk of bias was assessed using the Cochrane risk of bias tool.Results: Thirty-four RCTs enrolling 16,784 patients were included. Complete baseline and final mean DLQI data was retrieved for 24 studies (70.6%). The mean DLQI at baseline was reported in 79.4% of RCTs. The median at baseline was reported in 14.7% of RCTs. The mean DLQI at endpoint was reported in 23.5% of RCTs and the median DLQI at endpoint was reported in 5.9% of RCTs. The mean change in DLQI was reported in 64.7% of RCTs.Conclusions: DLQI was measured in most clinical trials assessing the efficacy of biologics for psoriasis. Studies did not adhere to uniform standards in publishing results, making analysis of the impact on DLQI challenging.Key Words: plaque psoriasis, quality of life, Dermatology Life Quality Index, Systematic Review, biologic therapy

scholarly journals Correlation between quality of life and adherence to treatment in hemodialysis patients

2018 ◽  
Vol 8 (1) ◽  
pp. 22-27 ◽  
Author(s):  
Mahin Naderifar ◽  
Mansoureh Zagheri Tafreshi ◽  
Mahnaz Ilkhani ◽  
Magid Reza Akbarizadeh ◽  
Fereshteh Ghaljaei
Keyword(s):  
Quality Of Life ◽  
Healthcare Providers ◽  
Life Quality ◽  
Well Being ◽  
Sample Volume ◽  
Hemodialysis Patients ◽  
Adherence To Treatment ◽  
Medical Sciences ◽  
The Mean

Introduction: Institutionalizing adherence to treatment in hemodialysis patients is one of the important nursing goals for improving quality of life in these patients. Adherence to treatment approach in these patients can play a pivotal role in improving the health level and feeling of well-being. Objectives: This study aimed at determining the quality of life in hemodialysis patients presenting to hemodialysis centers affiliated to Shahid Beheshti University of Medical Sciences, Tehran, Iran, on the basis of adherence to treatment. Patients and Methods: This is a correlational descriptive-analytic study. The study population consisted of hemodialysis patients in five hospitals affiliated to Shahid Beheshti University of Medical Sciences, Tehran, in 2017. The data were collected during 8 months from October 2016 to May 2017 in Tehran. A sample volume of 200 patients was determined in this study. Demographic information questionnaire, KDQOL-SF, and ESRD-AQ were applied in data collection. Availability sampling method was used to select the samples on the basis of inclusion criteria. The data were analyzed with SPSS version 18 using descriptive and inferential statistics. Results: Our findings showed that 50% of the patients were male. Most of the respondents of the study (23%) were 51-60 years old. The results indicated that the mean score of quality of life of patients was 50.42±22.81. The mean total score of adherence to treatment was 901.13±85.30. Also, the correlation coefficient in this study revealed a significant correlation between total score of quality of life and adherence to treatment (r=0.218, P<0.01). Conclusion: Considering the significant correlation between adherence to treatment and life quality of patients, healthcare providers can promote the life quality of these patients via focusing on planning programs for emphasizing the role of education and interventions that improve adherence to treatment in these patients.

Piezoelectric bone conduction hearing implant Osia® - audiological and quality of life benefits

2021 ◽  
Vol 75 (4) ◽  
pp. 1-5
Author(s):  
Joanna Marszał ◽  
Renata Gibasiewicz ◽  
Magdalena Błaszczyk ◽  
Maria Gawlowska ◽  
Wojciech Gawęcki
Keyword(s):  
Quality Of Life ◽  
Hearing Loss ◽  
Hearing Aids ◽  
Bone Conduction ◽  
Speech Understanding ◽  
Mixed Hearing Loss ◽  
Wide Range ◽  
The Mean ◽  
Bone Conduction Hearing

Introduction: Nowadays, there are many options to treat hearing-impaired patients: tympanoplastic surgery, hearing aids and a wide range of implantable devices. Objective: The aim of this study is to present the mid-term audiological and quality of life benefits after the implantation of the Osia®, a new active piezoelectric bone conduction hearing implant. Material and methods: The state of the tissues in implanted area, as well as audiological and quality of life results were analyzed six, nine and twelve months after implantation in a group of four adult patients with bilateral mixed hearing loss. Results: In all the cases, no postoperative complications were found. One year after surgery the mean audiological gain in FF PTA4 (pure tone average for 0.5, 1, 2, and 4 kHz) was 52.2±3.5 dB in comparison to the unaided situation, the mean speech understanding with Osia® in quiet was 90±8.2% for 50dB SPL, 98.8±2.5% for 65dB SPL and 100±0% for 80dB SPL, and mean speech understanding with Osia® in noise was 37.5%±23.6 for 50dB SPL, 93.8±4.8% for 65dB SPL and 98.8±2.5% for 80dB SPL. There was also an evident improvement in the quality of hearing as well as in the quality of life, measured by the APHAB (Abbreviated Profile of Hearing Aid Benefit) and the SSQ (Speech, Spatial and Qualities of Hearing Scale). Conclusions: The Osia® is an effective treatment option for patients with bilateral mixed hearing loss. The mid-term audiological and quality of life results are excellent, but further observations including bigger groups of patients and a longer follow-up are required.

scholarly journals Quality of Life in Cohabitants of Patients with Hidradenitis Suppurativa: A Cross-sectional Study

2020 ◽  
Vol 17 (16) ◽  
pp. 6000 ◽  
Author(s):  
Carmen Ramos-Alejos-Pita ◽  
Salvador Arias-Santiago ◽  
Alejandro Molina-Leyva
Keyword(s):  
Quality Of Life ◽  
Dermatology Life Quality Index ◽  
Quality Index ◽  
Hidradenitis Suppurativa ◽  
Life Quality ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Type D

Hidradenitis suppurativa (HS) is a chronic inflammatory disease that impairs patients’ physical and mental health. However, few studies have considered the consequences of HS on cohabitants. The aims of this study were to explore the impact of HS on the quality of life (QOL) of cohabitants and to assess potentially associated factors. A cross-sectional study was conducted and patients with HS and their cohabitants were invited to participate. Validated questionnaires were used to measure QOL, anxiety and depression, type D personality and sexual dysfunction. The clinical variables of patients and the demographic characteristics of cohabitants were also collected. Twenty-seven patients and 27 cohabitants were included for analysis. Patients and cohabitants presented significant QOL impairment. A direct association was found between the Dermatology Life Quality Index (DLQI) and the Familiar Dermatology Life Quality Index (FDLQI). DLQI scores were associated with the presence of negative affectivity, a trait typical of type D personality, as well as with cohabitants’ anxiety. FDLQI scores were associated with cohabitant anxiety and patient depression. Hidradenitis suppurativa damages quality of life in patients and cohabitants. Identifying potential psychological factors could help us to recognize at-risk patients and apply personalized treatments for them and their environment.

Sign in / Sign up

Export Citation Format

Share Document