Special edition of EJOP (February 2013) on quality of life in social science and clinical medicine: An introduction

2013 ◽  
Author(s):  
Paraskevi Theofilou
Keyword(s):  
Quality Of Life ◽  
Social Science ◽  
Clinical Medicine ◽  
Special Edition

scholarly journals OP0277-PARE METABERN, THE EUROPEAN REFERENCE NETWORK FOR RARE HEREDITARY DISEASES: STRUCTURE, OBJECTIVES, METABOLIC RMDS AND THE ROLES OF EUROPEAN PATIENT ADVOCACY GROUPS (EPAGS)

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 168.2-168
Author(s):  
L. Wagner ◽  
S. Sestini ◽  
C. Brown ◽  
A. Finglas ◽  
R. Francisco ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Social Science ◽  
Metabolic Pathways ◽  
Metabolic Disorders ◽  
Clinical Care ◽  
Single Point ◽  
Link Type ◽  
The Impact

Background:Inborn metabolic disorders (IMDs) currently encompass more than 1,500 diseases with new ones still to be identified1. Each of them is characterised by a genetic defect affecting a metabolic pathway. Only few of them have curative treatments, that target the respective metabolic pathway. Commonly, treatment examples include diet, substrate reduction therapies, enzyme replacement therapies, gene therapy and biologicals, enabling IMD-patient now to survive to adulthood. About 30 % of all IMDs involve the musculoskeletal system and are here referred to as rare metabolic RMDs. Generally, IMDs are very heterogenous with respect to symptoms and severity, often being systemic and affecting more children than adults. Thus, challenges include certified advanced training of adult metabolic experts, standardised transition plans, social support and development of therapies for diseases that do not have any cure yet.Objectives:Introduction of MetabERN, its structure and objectives, highlighting on the unique features and challenges of metabolic RMDs and describing the involvement of patient representation in MetabERN.Methods:MetabERN is stratified in 7 subnetworks (SNW) according to the respective metabolic pathways and 9 work packages (WP), including administration, dissemination, guidelines, virtual counselling framework, research/clinical trials, continuity of care, education and patient involvement. The patient board involves a steering committee and single point of contacts for each subnetwork and work package, respectively2. Projects include identifying the need of implementing social science to assess the psycho-socio-economic burden of IMDs, webinars on IMDs and their transition as well as surveys on the impact of COVID-193 on IMD-patients and health care providers (HCPs), social assistance for IMD-patients and analysing the transition landscape within Europe.Results:The MetabERN structure enables bundling of expertise, capacity building and knowledge transfer for faster diagnosis and better health care. Rare metabolic RMDs are present in all SNWs that require unique treatments according to their metabolic pathways. Implementation of social science to assess the psycho-socio-economic burden of IMDs is still underused. Involvement of patient representatives is essential for a holistic healthcare not only focusing on clinical care, but also on the quality of life for IMD-patients. Surveys identified unmet needs of patient care, patients having little information on national support systems and structural deficits of healthcare systems to ensure HCP can provide adequate clinical care during transition phases. These results are collected by MetabERN and forwarded to the Directorate-General for Health and Food Safety (DG SANTE) of the European Commission (EC) to be addressed further.Conclusion:MetabERN offers an infrastructure of virtual healthcare for patients with IMDs. Thus, in collaboration with ERN ReCONNET, MetabERN can assist in identifying rare metabolic disorders of RMDs to shorten the odyssey of diagnosis and advise on their respective therapies. On the other hand, MetabERN can benefit from EULAR’s longstanding experience regarding issues affecting the quality of life, all RMD patients are facing, such as pain, stiffness, fatigue, rehabilitation, maintaining work and disability claims.References:[1]IEMbase - Inborn Errors of Metabolism Knowledgebase http://www.iembase.org/ (accessed Jan 29, 2021).[2]MetabERN: European Refence Network for Hereditary Metabolic Disorders https://metab.ern-net.eu/ (accessed Jan 29, 2021).[3]Lampe, C.; Dionisi-Vici, C.; Bellettato, C. M.; Paneghetti, L.; van Lingen, C.; Bond, S.; Brown, C.; Finglas, A.; Francisco, R.; Sestini, S.; Heard, J. M.; Scarpa, M.; MetabERN collaboration group. The Impact of COVID-19 on Rare Metabolic Patients and Healthcare Providers: Results from Two MetabERN Surveys. Orphanet J. Rare Dis.2020, 15 (1), 341. https://doi.org/10.1186/s13023-020-01619-x.Acknowledgements:The authors thank the MetabERN collaboration group, the single point of contacts (SPOC) of the MetabERN patient board and the Transition Project Working Group (TPWG)Disclosure of Interests:None declared

QUALIDADE DE VIDA RELACIONADA À SAÚDE DE MULHERES IDOSAS EM TRATAMENTO DE CÂNCER DE MAMA

2022 ◽  
Author(s):  
LIA RAQUEL DE CARVALHO VIANA ◽  
GERLANIA RODRIGUES SALVIANO FERREIRA ◽  
STHEPHANIE DE ABREU FREITAS ◽  
KATIA NEYLA DE FREITAS MACEDO COSTA
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Social Science ◽  
Cáncer De Mama ◽  
Life Questionnaire ◽  
European Organization ◽  
Quality Of Life Questionnaire ◽  
The Social

OBJETIVO: AVALIAR A QUALIDADE DE VIDA RELACIONADA À SAÚDE DE MULHERES IDOSAS EM TRATAMENTO DE CÂNCER DE MAMA. MÉTODO: ESTUDO TRANSVERSAL, DESCRITIVO, COM ABORDAGEM QUANTITATIVA, REALIZADO COM 57 MULHERES IDOSAS EM TRATAMENTO DE CÂNCER DE MAMA. A COLETA DE DADOS OCORREU DURANTE OS MESES DE JUNHO A NOVEMBRO DE 2019, POR MEIO DE UM INSTRUMENTO SEMIESTRUTURADO PARA OBTENÇÃO DE DADOS SOCIODEMOGRÁFICOS E CLÍNICOS E OS QUESTIONÁRIOS EUROPEAN ORGANIZATION FOR RESEARCH AND TREATMENT OF CANCER QUALITY OF LIFE QUESTIONNAIRE “CORE” 30 E QUALITY OF LIFE QUESTIONNAIRE – BREAST CANCER 23. OS DADOS FORAM ANALISADOS DE FORMA DESCRITIVA COM O AUXÍLIO DO STATISTICAL PACKAGE FOR THE SOCIAL SCIENCE FOR WINDOWS, VERSÃO 22.0. O PROJETO FOI APROVADO PELO COMITÊ DE ÉTICA EM PESQUISA SOB PARECER Nº 3.293.768. RESULTADOS: NA QUALIDADE DE VIDA GERAL, OBSERVOU-SE QUE AS IDOSAS APRESENTARAM BOA MÉDIA NA ESCALA DE SAÚDE GLOBAL E RAZOÁVEL NA ESCALA FUNCIONAL, DESTACANDO-SE A FUNÇÃO SOCIAL. JÁ A ESCALA DE SINTOMAS APRESENTOU MÉDIA BAIXA, DESTACANDO-SE A DIFICULDADE FINANCEIRA, INSÔNIA, FADIGA E DOR. NO QUESTIONÁRIO ESPECÍFICO, A ESCALA FUNCIONAL APRESENTOU MAIOR MÉDIA, COM DESTAQUE POSITIVO PARA A IMAGEM CORPORAL. NA ESCALA DE SINTOMAS, OS EFEITOS COLATERAIS E OS SINTOMAS DA MAMA FORAM OS QUE MAIS CONTRIBUÍRAM PARA A DETERIORAÇÃO DA QUALIDADE DE VIDA. CONCLUSÃO: A QUALIDADE DE VIDA GLOBAL APRESENTOU-SE BOA, NO ENTANTO, A MESMA SOFRE IMPACTOS DEVIDO AOS EFEITOS COLATERAIS AO TRATAMENTO.

scholarly journals A systematic review of olfactory related questionnaires and scales

2020 ◽  
Vol 0 (0) ◽  
pp. 0-0
Author(s):  
P. Han ◽  
T. Su ◽  
M. Qin ◽  
H. Chen ◽  
T. Hummel
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Clinical Medicine ◽  
Reliability And Validity ◽  
Clinical Intervention ◽  
Olfactory Dysfunction ◽  
Good Reliability ◽  
Research Areas ◽  
The Impact

PURPOSE: Although neglected by science for a long time, the sense of olfaction has received increasing attention from research areas including psychology, neuroscience, clinical medicine and nutrition. With the rise of psychophysical and neuroimaging re- search into olfaction, psychometric tools (e.g. questionnaires and scales) are the basis for the quantitative exploration of inter-in- dividual variability regarding olfactory related responses. The current systematic review is to summarize existing olfaction related questionnaires and/or scales. METHODS: Peer-reviewed literature on scales and questionnaires related to perception of odors were searched from online databa- ses (PubMed, Web of Science and PsycINFO). Twenty-one articles that meet the following criteria were included in the review: “hu- man species”, “no physical odor stimuli” and “describing the original development of the tool”, and “with specific focus on olfaction or odor related responses or behaviors”. The psychometric properties, advantages and possible disadvantages were discussed. RESULTS: Existing psychometric measures focus on various aspects of olfactory related responses and behaviors, including af- fective experiences of odor perception, awareness and attitude towards olfaction, olfactory function and the quality of life change due to olfactory dysfunction, and the ability to create vivid mental odor images. While most of them have been tested to have good reliability and validity, some were relatively time-consuming due to the number of questionnaire items. Besides, although many measures have been used in clinical populations, few have provided information on the predictive validity regarding effecti- veness of clinical intervention on changes of certain responses or behaviors. SUMMARY: The current review provides an overview of olfactory related questionnaires and scales, highlighting the emotional and affective impact of olfaction and the impact on quality of life due to olfactory dysfunction. With growing interest in olfaction as an important sense, the development and use of psychometrically sound measurements in conjunction with objective assess- ments will advance our understanding of human olfaction and olfactory dysfunction. The review provides a guide for researchers and clinicians alike to select olfactory scales suitable for olfactory research with different experimental purposes and specific samples.

Over Warming Syndrome in Adults

2009 ◽  
Vol 24 (S1) ◽  
pp. 1-1
Author(s):  
X. Han-You
Keyword(s):  
Quality Of Life ◽  
Clinical Medicine ◽  
Clinical Symptoms ◽  
New Methods ◽  
Treatment And Prevention ◽  
Normal People ◽  
Health Level ◽  
And Behavior ◽  
Harmful Effects

Clinical significance:This article implicates that doctors must know the Over Warming Syndrome in Adults’ harmful effects, its clinical managements, imperative importance to prevent other critical diseases attacks. So that the doctors can do patient and normal people education, counsel about the new syndrome, enhance people's health level and quality of life.Objectives:Name a new kind of syndrome, in order to provide new methods of thinking and behavior for doctors to well diagnose, prevent, and treat the syndrome and other diseases and for doctors to do patient education and counseling.Method:Summarize author of this paper the self-experiences about this syndrome's clinical medicine.Results:The etiology, clinical symptoms, mechanism, diagnosis, treatment and prevention of this new syndrome are easy to understand by the doctors. Which like the symptoms of the dehydration caused by over warming.Conclusions:It is very important to name and understand this new syndrome for enhancing the human-being's health level and quality of life, preventing the human-being from development of other critical diseases. which is much too worth to be spread.

scholarly journals Etyczne aspekty globalizacji w procesie kształtowania przedsiębiorczości

2006 ◽  
Vol 2 ◽  
pp. 185-192
Author(s):  
Monika Borowiec
Keyword(s):  
Quality Of Life ◽  
Social Science ◽  
Ethical Attitudes ◽  
The World ◽  
Special Meaning

The progressive process of globalization influences on polarization of the world in decisive degree and differentiates the quality of life in more and more greater range. It is important to make wide studies connected with limiting these unprofitable present trends, basing on rules of ethics, which should direct oneself life. Special meaning has education of entrepreneurship in this regard. According to author consequences of globalization should be talked over in light of ethical rules and social science, when we should turn attention to odds and attitudes of ethical businessmen. The chances connected to processes of globalization depend on forming ethical attitudes  in education

scholarly journals Perfil de usuários de um serviço de estomaterapia: análise de cluster

2022 ◽  
Vol 26 ◽  
Author(s):  
Fabiane Lopes dos Santos ◽  
Janaína Sena Castanheira ◽  
Marina Soares Mota ◽  
Aline Neutzling Brum ◽  
Jamila Geri Tomaschewski Barlem ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Science ◽  
The Social ◽  
Cluster 2

Resumo Objetivo Analisar o perfil das pessoas com estomias intestinais e/ou urinárias acompanhadas em serviço de estomaterapia, conforme variáveis sociodemográficas e clínicas. Método Trata-se de um estudo transversal, realizado com 90 usuários do serviço de estomaterapia. A coleta foi realizada de janeiro a fevereiro de 2020, por meio de dois instrumentos: COH-QOL-Ostomy, adaptado e traduzido para o contexto brasileiro; e City of Hope Quality of Life – Ostomy Questionnaire, instrumento original com questionário elaborado pelas próprias pesquisadoras, contemplando os aspectos sociodemográfico e clínico. Esses dados foram transferidos e organizados no Software Statistical Package for the Social Science, versão 22. Resultados Foram identificados quatro grupos distintos. No cluster 1, o grupo possui de duas a três complicações associadas ao estoma e 52,9% possuem colostomia. No cluster 2, 45% não apresentam nenhuma complicação e 70% têm urostomia. Já no cluster 3, a totalidade do grupo apresenta uma complicação e colostomia. E no cluster 4, nenhum participante do grupo apresenta complicação e todos têm colostomia. Conclusão e implicações para a prática O estudo proporcionou a geração de dados que podem auxiliar no planejamento do trabalho desenvolvido pelas equipes de saúde junto aos pacientes estomizados.

Sleep and Quality of Life in Clinical Medicine

JAMA ◽  
2008 ◽  
Vol 300 (18) ◽  
pp. 2185
Author(s):  
Michelle Cao
Keyword(s):  
Quality Of Life ◽  
Clinical Medicine
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