Defining a Minimum Set of Standardized Patient-centered Outcome Measures for Macular Degeneration

Purpose To define a minimum set of outcome measures for tracking, comparing, and improving macular degeneration care. Design Recommendations from a working group of international experts in macular degeneration outcomes registry development and patient advocates, facilitated by the International Consortium for Health Outcomes Measurement (ICHOM). Methods Modified Delphi technique, supported by structured teleconferences, followed by online surveys to drive consensus decisions. Potential outcomes were identified through literature review of outcomes collected in existing registries and reported in major clinical trials. Outcomes were refined by the working group and selected based on impact on patients, relationship to good clinical care, and feasibility of measurement in routine clinical practice. Results Standardized measurement of the following outcomes is recommended: visual functioning and quality of life (distance visual acuity, mobility and independence, emotional well-being, reading and accessing information); number of treatments; complications of treatment; and disease control. Proposed data collection sources include administrative data, clinical data during routine clinical visits, and patient-reported sources annually. Recording the following clinical characteristics is recommended to enable risk adjustment: age; sex; ethnicity; smoking status; baseline visual acuity in both eyes; type of macular degeneration; presence of geographic atrophy, subretinal fibrosis, or pigment epithelial detachment; previous macular degeneration treatment; ocular comorbidities. Conclusions The recommended minimum outcomes and pragmatic reporting standards should enable standardized, meaningful assessments and comparisons of macular degeneration treatment outcomes. Adoption could accelerate global improvements in standardized data gathering and reporting of patient-centered outcomes. This can facilitate informed decisions by patients and health care providers, plus allow long-term monitoring of aggregate data, ultimately improving understanding of disease progression and treatment responses

Memahami Konsepsi “Kafir” pada Organisasi Keagamaan Nahdlatul Ulama (NU) dan Muhammadiyah di Media Sosial

Radikalisme muncul dan berkembang di latar sosial berbeda. Di Asia, radikalisme muncul dalam bentuk identitas kelompok agama seperti ekstrem Buddha di Myanmar, ekstrem Hindu di India, dan militan Muslim di Timur Tengah dan Asia, termasuk Indonesia. Pada perkembangannya, radikalisme mewujud dalam bentuk pelabelan seperti “kafir” yang membawa konsekuensi pada diskriminasi, terutama pada kelompok non-muslim. Nahdlatul Ulama dan Muhammadiyah juga mengambil peran dalam penggunaan istilah ini. Riset ini berupaya untuk mengungkap konstruksi “kafir” oleh media di organisasi keagamaan melalui pendekatan semiotika struktural Saussure. Hasil riset menunjukkan bahwa organisasi Islam NU dan Muhammadiyah memiliki konstruksi berbeda terhadap istilah “kafir”. NU menyepakati bahwa terdapat dua konteks yang berbeda dalam penggunaan istilah “kafir”, yaitu dalam konteks keimanan (agama) dan konteks bernegara. NU merekomendasikan untuk menghilangkan penggunaan istilah “kafir” bagi non-muslim dan menggantinya dengan istilah muwathinun (warga negara) dalam konteks kehidupan berbangsa dan bernegara. Berbeda dengan NU, Muhammadiyah menekankan bahwa penggunaan istilah “kafir” memiliki kecenderungan merujuk kepada non-muslim. Istilah “kafir” tidak boleh dihilangkan dalam ajaran Islam, namun penyebutan “kafir” perlu digunakan secara bijak. Komunikasi menjadi perantara sentral dalam diskursus tentang politik identitas di Indonesia

An Analysis of Ranibizumab Treatment and Visual Outcomes in Real-World Settings: The Uncover Study

Purpose To describe intravitreal ranibizumab treatment frequency, clinical monitoring, and visual outcomes (including mean central retinal thickness [CRT] and visual acuity [VA] changes from baseline) in neovascular age-related macular degeneration (nAMD) in real-world settings across three ranibizumab reimbursement scenarios in the Middle East, North Africa, and the Asia–Pacific region. Methods Non-interventional multicenter historical cohort study of intravitreal ranibizumab use for nAMD in routine clinical practice between April 2010 and April 2013. Eligible patients were diagnosed with nAMD, received at least one intravitreal ranibizumab injection during the study period, and had been observed for a minimum of 1 year (up to 3 years). Reimbursement scenarios were defined as self-paid, partially-reimbursed, and fully-reimbursed. Results More than three-fourths (n = 2521) of the analysis population was partially-reimbursed for ranibizumab, while 16.4% (n = 532) was fully-reimbursed, and 5.8% was self-paid (n = 188). The average annual ranibizumab injection frequency was 4.1 injections in the partially-reimbursed, 4.7 in the fully-reimbursed and 2.6 in the self-paid populations. The average clinical monitoring frequency was estimated to be 6.7 visits/year, with similar frequencies observed across reimbursement categories. On average, patients experienced VA reduction of −0.7 letters and a decrease in CRT of −44.4 μm. The greatest mean CRT change was observed in the self-paid group, with −92.6 μm. Conclusions UNCOVER included a large, heterogeneous ranibizumab-treated nAMD population in real-world settings. Patients in all reimbursement scenarios attained vision stability on average, indicating control of disease activity. Electronic supplementary material The online version of this article (10.1007/s00417-017-3890-8) contains supplementary material, which is available to authorized users.PubMedWoSScopu

Personal Life Satisfaction as a Measure of Societal Happiness is an Individualistic Presumption: Evidence from Fifty Countries

Numerous studies document that societal happiness is correlated with individualism, but the nature of this phenomenon remains understudied. In the current paper, we address this gap and test the reasoning that individualism correlates with societal happiness because the most common measure of societal happiness (i.e., country-level aggregates of personal life satisfaction) is individualism-themed. With the data collected from 13,009 participants across fifty countries, we compare associations of four types of happiness (out of which three are more collectivism-themed than personal life satisfaction) with two different measures of individualism. We replicated previous findings by demonstrating that societal happiness measured as country-level aggregate of personal life satisfaction is correlated with individualism. Importantly though, we also found that the country-level aggregates of the collectivism-themed measures of happiness do not tend to be significantly correlated with individualism. Implications for happiness studies and for policy makers are signaled. © 2020, The Author(s)

Personal Life Satisfaction as a Measure of Societal Happiness is an Individualistic Presumption: Evidence from Fifty Countries

Numerous studies document that societal happiness is correlated with individualism, but the nature of this phenomenon remains understudied. In the current paper, we address this gap and test the reasoning that individualism correlates with societal happiness because the most common measure of societal happiness (i.e., country-level aggregates of personal life satisfaction) is individualism-themed. With the data collected from 13,009 participants across fifty countries, we compare associations of four types of happiness (out of which three are more collectivism-themed than personal life satisfaction) with two different measures of individualism. We replicated previous findings by demonstrating that societal happiness measured as country-level aggregate of personal life satisfaction is correlated with individualism. Importantly though, we also found that the country-level aggregates of the collectivism-themed measures of happiness do not tend to be significantly correlated with individualism. Implications for happiness studies and for policy makers are signaled