scholarly journals Why Don’t You Do Something to Help Me? Digital Humanism: A Call for Cities to Act

2021 ◽  
pp. 257-262
Author(s):  
Michael Stampfer
Keyword(s):  
Quality Of Life ◽  
Public Space ◽  
Real Life ◽  
Social Goals ◽  
Political Agenda ◽  
Top Down ◽  
Urban Agglomerations

AbstractCities across the globe face the challenge of managing massive digitization processes to meet climate goals and turn urban agglomerations into more livable places. Digital Humanism helps us to see and define how such transformations can be done through empowerment of citizens and administrations, with a strong political agenda calling for inclusion, quality of life, and social goals. Such an approach appears to be much more promising than top-down technological fantasies as often provided by large companies in fields like housing, transport, the use of public space, or healthcare. The title refers to a question put to Stan Laurel by Oliver Hardy in countless movies. Here the latter stands for a city calling industry for help. The delivery as we know can lead straight to disaster, but in real life it is less funny than with the two great comedians.

Long-Term Effectiveness of Fingolimod for Multiple Sclerosis in a Real-World Clinical Setting

2021 ◽  
pp. 1-6
Author(s):  
Cihat Uzunköprü ◽  
Yesim Beckmann ◽  
Sabiha Türe
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Real Life ◽  
Life Assessment ◽  
Health Related Quality ◽  
Serious Adverse Events ◽  
Related Quality ◽  
Health Related

<b><i>Introduction:</i></b> The primary aim of the present study was to evaluate the long-term efficacy of fingolimod in patients with multiple sclerosis (MS); secondary aims were to describe the safety of fingolimod with the evaluation of treatment satisfaction and impact on the quality of life in real life. <b><i>Methods:</i></b> We collected clinical, demographical, neuroradiological, and treatment data, including pre- and posttreatment status health-related quality of life from 286 MS patients consecutively treated with fingolimod. Clinical assessment was based on the Expanded Disability Status Scale (EDSS), and quality of life assessment was performed with MS-related quality of life inventory (MSQOLI). The data were recorded at baseline and every 6 months for 2 years. <b><i>Results:</i></b> One hundred and fourteen males and 172 females were enrolled. The annualized relapse rate and EDSS showed a statistically significant reduction during the observation period (<i>p</i> &#x3c; 0.001). The patients also demonstrated substantial improvements in magnetic resonance imaging (MRI) outcomes (<i>p</i> &#x3c; 0.001). Health-related quality of life scores improved significantly between baseline and 24-month visit (<i>p</i> &#x3c; 0.001). No serious adverse events occurred. <b><i>Conclusion:</i></b> In our cohort, fingolimod treatment was associated with reduced relapse, MRI activity, and improved EDSS and MSQOLI scores. Additionally, fingolimod has been able to maintain its effectiveness over a considerable long period of treatment.

scholarly journals Patient-Reported Outcomes, Health-Related Quality of Life, and Clinical Outcomes for Urothelial Cancer Patients Receiving Chemo- or Immunotherapy: A Real-Life Experience

2021 ◽  
Vol 10 (9) ◽  
pp. 1852
Author(s):  
Gry Assam Taarnhøj ◽  
Henriette Lindberg ◽  
Christoffer Johansen ◽  
Helle Pappot
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Patient Reported Outcomes ◽  
Life Experience ◽  
Locally Advanced ◽  
Neoadjuvant Treatment ◽  
Real Life ◽  
Oncological Treatment ◽  
Patient Reported

Patients with urothelial cell carcinoma (UCC) often have comorbidities, which cause trouble for the completion of oncological treatment, and little is known about their quality of life (QoL). The aim of the present study was to obtain and describe patient-reported outcomes (PRO) and QoL data from UCC patients in the treatment for locally advanced muscle-invasive or metastatic UCC. A total of 79 patients with UCC completed four questionnaires (EORTC QLQ-C30, QLQ-BLM30, HADS, and select PRO-CTCAE™ questions) once weekly during their treatment. From those, 26 patients (33%) underwent neoadjuvant treatment for local disease while 53 patients (67%) were treated for metastatic disease. Of all patients, 54% did not complete the planned treatment due to progression, nephrotoxicity, death, or intolerable symptoms during treatment. The five most prevalent PRO-CTCAE grade ≥ 2 symptoms were frequent urination (37%), fatigue (35%), pain (31%), dry mouth (23%), and swelling of the arms or legs (23%). The baseline mean overall QoL was 61 (±SD 24) for all patients (neoadjuvant (73, ±SD 19) and metastatic (54, ±SD 24)) and remained stable over the course of treatment for both groups. A stable overall QoL was observed for the patients in this study. More than half of the patients did not, however, complete the planned treatment. Further supportive care is warranted for bladder cancer patients.

Abstract 15830: Elevated Resting Heart Rate is Associated With Impaired Quality of Life and Worse NYHA Functional Capacity in Patients With Chronic Heart Failure: Results From REALITY HF Study

Circulation ◽  
2014 ◽  
Vol 130 (suppl_2) ◽  
Author(s):  
Yuksel Cavusoglu ◽  
Omer Kozan ◽  
Ahmet Temizhan ◽  
Serdar Kucukoglu
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Heart Rate ◽  
Functional Capacity ◽  
Real Life ◽  
Left Ventricular ◽  
Summary Score ◽  
Treatment Modalities ◽  
Resting Heart Rate

Purpose: Resting heart rate (HR), health related quality of life (HQoL) and NYHA functional capacity are referred as important determinants of prognosis and targets of therapy in heart failure (HF). REALITY HF (Resting Heart Rate and Real Life Treatment Modality in Outpatients with Left Ventricular Systolic Dysfunction) study data were analyzed for the evaluation of any relationship of resting HR with HQoL assessed by Kansas City Cardiomyopathy Questionnaire (KCCQ) and NYHA functional class. Methods: REALITY HF was a multicenter, prospective registry designed to evaluate HF patients’ characteristics and effects of treatment modalities on resting HR and enrolled 1057 patients (age 61±12 years) with LVEF <40%. 781 (74%) patients in sinus rhythm were included in this analysis. Patients were classified into 4 groups according to the quartiles of HR: Q1:<68 bpm (n=234), Q2:69-75 bpm (n=189), Q3:76-87 bpm (n=194) and Q4:>87 bpm (n=164). KCCQ was completed in a random sample of 320 (Q1:n=27, Q2:n=99, Q3:n=125, Q4:n=69) patients, in which higher scores show better patient’s health status. Results: During enrollment, 82% of patients were receiving ≥2 drugs including ACE[[Unable to Display Character: &#304;]]/ARB, beta blocker, aldosterone blocker, diuretic or digoxin. Resting HR was 76±14 bpm and 68% of patients had a resting HR ≥70 bpm. KCCQ overall summary score (OSC) was found to be 75.7±13.2 in those in Q1, 65.5±20.8 in Q2, 64.4±20.6 in Q3 and 58.3±21.2 in Q4 (p=0.004) and KCCQ clinical summary score (CSS) was 80.4±15.7 in those in Q1, 70.0±22.4 in Q2, 69.9±21.9 in Q3 and 63.8±23.3 in Q4 (p=0.016). Also, there was a significant negative correlation between resting HR and OSC (p=0.008) or CSS (p=0.031). The distribution of NYHA-I patients for Q1, Q2, Q3 and Q4 were 40.7%, 22.8%, 23.8% and 12.7%, NYHA-II patients-30.8%, 23.1%, 27.2% and 18.9%, NYHA-III patients-21.2%, 23.9%, 24.3% and 30.6% and NYHA-IV patients-22.7%, 34.1%, 22.7% and 20.5%, respectively (p<0.001). Also, resting HR were found to gradually and significantly increase across NYHA categories (72.8±12 bpm in NYHA-I, 76.1±13 bpm in NYHA-II, 80.2±15 bpm in NYHA-III and 78.9±16 bpm in NYHA-IV, p<0.001). Conclusions: These results suggest that elevated resting HR in HF patients is associated with impaired HQoL and worse NYHA functional capacity.

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 Akurasi Arah Kiblat Masjid di Ruang Publik

2018 ◽  
Vol 2 (1) ◽  
pp. 159
Author(s):  
Anisah Budiwati
Keyword(s):  
Quality Of Life ◽  
Data Collection ◽  
Qualitative Analysis ◽  
Public Space ◽  
Analysis Method ◽  
Religious Orders ◽  
Collection Method ◽  
The Public ◽  
The City

This research explores the concept of understanding of mosque managers in the public space about the importance of facing the direction of Qibla. Samples Mosque located in the public space of the Hospital Jogja International Hospital, Adisutjipto Airport and Mall Plaza Ambarrukmo be proof of the tendency of pattern of understanding of managers of religious orders to face the direction of Qiblah correctly. By using qualitative analysis method and data collection method in the form of observation, interview and documentation, it is found that first, that understanding of mosque managers in public space at three places reflects the quality of life of Islami ie measuring to the expert so that the direction of qibla . Secondly, the accuracy of the direction of the mosque building in the public space in Sleman Yogyakarta is included in the category of accurate with the maximum reason for the 6 minute arc disturbance, where the direction of the largest deviation on the mosques is 0o 1 '20.8 "or equivalent to 3,074 km which means still leads the city of Mecca.Keywords: Accuracy, Understanding and Mosque in Public Space Penelitian ini menggali konsep pemahaman para pengelola Masjid di ruang publik tentang pentingnya menghadap arah kiblat. Sampel Masjid yang berada di ruang publik yakni Rumah Sakit Jogja International Hospital, Bandara Adisutjipto dan Mall Plaza Ambarrukmo menjadi bukti kecenderungan pola pemahaman pengelola terhadap perintah agama untuk menghadap ke arah kiblat dengan tepat. Dengan menggunakan metode analisis kualitatif dan metode pengumpulan data berupa observasi, wawancara dan dokumentasi diperoleh hasil penelitian, pertama bahwa pemahaman para pengelola masjid di ruang publik pada tiga tempat tersebut mencerminkan kualitas hidup Islami yakni melakukan pengukuran kepada pihak ahli sehingga arah kiblat sesuai dengan keilmuan astronomi. Kedua, akurasi atau ketelitian arah kiblat bangunan Masjid di ruang publik di Sleman Yogyakarta termasuk dalam kategori akurat dengan alasan maksimal penyimpangan 6 menit busur, di mana arah penyimpangan paling besar pada masjid-masjid tersebut adalah 0o 1’ 20,8” atau setara 3,074 km yang berarti masih mengarah kota Mekah.Kata kunci: Akurasi, Pemahaman dan Masjid di Ruang Publik

scholarly journals WROCŁAWSKI BUDŻET OBYWATELSKI JAKO NARZĘDZIE DO WZMACNIANIA KAPITAŁU NATURALNEGO I ODPORNOŚCI MIASTA NA ZMIANY KLIMATU W LATACH 2016-2018

2021 ◽  
Vol 37 ◽  
pp. 65-77
Author(s):  
Marta Joanna Jamontt ◽  
Karol Kociszewski ◽  
Johannes Platje
Keyword(s):  
Climate Change ◽  
Quality Of Life ◽  
Health Communication ◽  
Public Space ◽  
Natural Capital ◽  
Participatory Budget ◽  
The City

Participatory budgets are a popular form of co-decision of residents about public space and quality of life in the city. Projects submitted to participatory budgets respond to needs such as recreation, health, communication and safety. This article evaluates the projects from 2016-2018 of the Wroclaw Participatory Budget in terms of aspects related to the wider issue of natural capital and climate change. The results obtained indicate that despite increasing financial outlays on projects that can contribute to strengthening environmental and climate aspects, the share of investments directly targeted at their implementation is relatively small. A total of 201 projects were analyzed, of which 12% directly and 18% indirectly referred to issues related to natural capital and/or climate change.

scholarly journals Real-Life Indications of Interleukin-1 Blocking Agents in Hereditary Recurrent Fevers: Data From the JIRcohort and a Literature Review

2021 ◽  
Vol 12 ◽  
Author(s):  
Caroline Vinit ◽  
Sophie Georgin-Lavialle ◽  
Aikaterini Theodoropoulou ◽  
Catherine Barbier ◽  
Alexandre Belot ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Disease Activity ◽  
Severe Disease ◽  
Interleukin 1 ◽  
Real Life ◽  
Treat To Target ◽  
Mevalonate Kinase Deficiency ◽  
Combining Data

BackgroundInterleukin (IL)-1 inhibitors represent the main treatment in patients with colchicine-resistant/intolerant familial Mediterranean fever (crFMF), mevalonate kinase deficiency (MKD), and tumor necrosis factor receptor-associated periodic syndrome (TRAPS). However, the reasons for the use of IL-1 inhibitors in these diseases are still not completely clarified.ObjectiveIdentify real-life situations that led to initiating anakinra or canakinumab treatment in hereditary recurrent fevers (HRFs), combining data from an international registry and an up-to-date literature review.Patients and MethodsData were extracted from the JIRcohort, in which clinical information (demographic data, treatment, disease activity, and quality of life) on patients with FMF, MKD, and TRAPS was retrospectively collected. A literature search was conducted using Medline, EMBASE, and Cochrane databases.ResultsComplete data of 93 patients with HRF (53.8% FMF, 31.2% MKD, and 15.1% TRAPS) were analyzed. Data from both the registry and the literature review confirmed that the main reasons for use of IL-1 blockers were the following: failure of previous treatment (n = 57, 61.3% and n = 964, 75.3%, respectively), persistence of disease activity with frequent attacks (n = 44, 47.3% and n = 1,023, 79.9%) and/or uncontrolled inflammatory syndrome (n = 46, 49.5% and n = 398, 31.1%), severe disease complication or associated comorbidities (n = 38, 40.9% and n = 390, 30.4%), and worsening of patients’ quality of life (n = 36, 38.7% and n = 100, 7,8%). No reasons were specified for 12 (16.4%) JIRcohort patients and 154 (12%) patients in the literature.ConclusionIn the absence of standardized indications for IL-1 inhibitors in crFMF, MKD, and TRAPS, these results could serve as a basis for developing a treat-to-target strategy that would help clinicians codify the therapeutic escalation with IL-1 inhibitors.

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