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

scholarly journals Persepsi Komunitas Adat Terpencil Suku Anak Dalam (SAD) terhadap Pelayanan Kesehatan

2019 ◽  
Vol 19 (3) ◽  
pp. 602
Author(s):  
Mila Triana Sari ◽  
Hartati Sandora ◽  
Haflin Haflin
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Qualitative Research ◽  
Sampling Method ◽  
Care Service ◽  
Health Care Service ◽  
Purposive Sampling ◽  
Interview Guide ◽  
The Impact

The solitory custom community of Suku Anak Dalam (SAD) is one of group society whose life are depend to the natural researches in the forest. It is needed an effort to provide service in order to meet their needed, especially health care service for improving their quality of life in the solitary custom Community of Suku Anak Dalam.  This research was conducted in order to know about the persepsion of SAD society towards Health Care Service in the Working Area of Puskesmas Pematang Kabau. This research was conducted on Januari until February 2017 for the purpose of getting understanding about persepsion of solitary custom Community of Suku Anak Dalam towards health care service, the number of participants were 15 people. This is qualitative research with purposive sampling method. The research instruments were indepth interview and interview guide. The result of the research analyzed by using Colaizzi Technique. The finding of the research showed five themes:  the reason of SAD Society in terms of receiving care service. Secondly, the respond of SAD society, thirdly, about the changing and the impact of SAD society. Fourth, the meaning of health care service to SAD society. And fifth the experience of SAD society towards health and service.SAD society gave respond about perception or possitive support towards Health Care Service.

scholarly journals Komunitas Masyarakat Dan Perawatan Kesehatan Dalam Peningkatan Kualitas Hidup

2020 ◽  
Vol 10 (1) ◽  
pp. 11-24
Author(s):  
Agustinus Hermino
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Health Care Quality ◽  
Health Sector ◽  
Well Being ◽  
Individual Variability ◽  
Care Quality ◽  
Global Era ◽  
The Impact

Latar belakang: Seiring dengan perkembangan jaman, dalam beberapa tahun terakhir ini banyak perhatian yang difokuskan pada eksplorasi dampak penyakit fisik dan mental pada kualitas hidup seseorang baik secara individu maupun masyarakat secara keseluruhan. Sifat subyektif dari 'kualitas hidup' individu, merupakan konsep yang dinamis untuk diukur dan didefinisikan, tetapi bahwa secara umum dapat dipandang sebagai konsep multidimensi yang menekankan pada persepsi diri dari keadaan pikiran seseorang saat iniTujuan: penulisan ini bertujuan untuk memberikan pemahaman tentang peran masyarakat dalam memahani pentingnya kesehatan di era global ditinjau dari perspektif akademis. Pada sektor kesehatan pemahaman kesehatan menjadi sangat pentingnya karena akan menunjukkan pada kualitas hidup seseorang, tetapi hal ini tidak cukup secara individu karena diperlukan pemahaman secara menyeluruh terhadap masyarakat tentang makna kesehatan dan perawatan kesehatan.Metode: penulisan ilmiah ini adalah dengan melakukan analisa akademis dari dari berbagai sumber rujukan relevan sehingga menemukan makna teoritis baru dalam rangka menjawab tantangan yang terjadi di masyarakat.Hasil: Berdasarkan berbagai sumber rujukan yang ada, dapat disimpulkan bahwa kesehatan merupakan gaya hidup yang bertujuan untuk mencapai kesejahteraan fisik, emosional, intelektual, spiritual, dan lingkungan. Penggunaan langkah-langkah kesehatan dapat meningkatkan stamina, energi, dan harga diri, kemudian meningkatkan kualitas hidup. Dengan demikian maka konsep kesehatan memungkinkan adanya variabilitas individu. Kesehatan dapat dianggap sebagai keseimbangan aspek fisik, emosional, psikologis, sosial dan spiritual dari kehidupan seseorang. Kata kunci: masyarakat, perawatan kesehatan, kualitas hidup Society Community and Health Care in Improving Quality of LifeAbstract Background: Along with the development of the era, in recent years there has been a lot of attention focused on exploring the impact of physical and mental illness on the quality of life of a person both individually and as a whole. The subjective nature of an individual's 'quality of life' is a dynamic concept to measure and define, but that in general can be seen as a multidimensional concept that emphasizes self-perception of one's current state of mindAim: purpose of this study is to provide an understanding the role of community in understanding the importance of health in the global era from an academic perspective. In the health sector understanding of health is very important because it will show the quality of life of a person, but this is not enough individually because a comprehensive understanding of the meaning of health and health care is needed. Method: The method of scientific writing is to carry out academic analysis from various relevant reference sources, and find new theoretical meanings in order to answer the challenges that occur in society. Keyword: Community, Society,Health Care, Quality oflife Resullt : Based on various academic reference, it can be concluded that health is a lifestyle that aims to achieve physical, emotional, intellectual, spiritual, and environmental well-being. The use of health measures can increase stamina, energy, and self-esteem, then improve the quality of life. Thus the concept of health allows for individual variability. Health can be considered as a balance of physical, emotional, psychological, social and spiritual aspects of one's life. Keywords: community, health care, quality of life 

scholarly journals Pain location matters: the impact of leg pain on health care use, work disability and quality of life in patients with low back pain

2014 ◽  
Vol 24 (3) ◽  
pp. 444-451 ◽  
Author(s):  
Samantha L. Hider ◽  
David G. T. Whitehurst ◽  
Elaine Thomas ◽  
Nadine E. Foster
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Low Back Pain ◽  
Work Disability ◽  
Health Care Use ◽  
Leg Pain ◽  
Low Back ◽  
Pain Location ◽  
The Impact

scholarly journals HEALTH UNDER OCCUPATION Counter Strategies and Resistance Tactics of Palestinians and the Health System in the State of Palestine

2019 ◽  
Author(s):  
Sigge Andersson
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Health System ◽  
Access To Health Care ◽  
The State ◽  
Health Determinants ◽  
Theory Approach ◽  
Access To Health ◽  
The Impact

The impact of occupation on health and access to health care is a significant issue for the state, health sector and citizens of Palestine, who struggle with difficulties related to an enduring sociopolitical stalemate. The study presents narratives from the field, conceptually exploring if and how occupation affects health and access to health care and how the situation is tackled by Palestinians in general and by health system actors specifically. A grounded theory approach analyzing in-depth interviews with health staff and field memos was used, with semi-quantification of emerging concepts through surveys of Hebron students that assessed health-related quality of life and health literacy with psychometric instruments (SF36 and GSE) and assumed health determinants. One key theme in the data analysis was isolation as a result of multiple barriers, including the wall and checkpoints, imprisonment and violence, which have an impact on determinants of health and quality of life in Palestine. In the survey 54% (n=90) were affected by such factors of occupation. Barriers affect access to health care, especially in rural areas. Mentally and materially breaking free from barriers of occupation seems to be a common task in all levels of Palestinian society. Achieving this goal requires different counter strategies and tactics. Presently, Palestine depends on ad hoc coping strategies, including the use of mobile clinics. Other ways to cope emerged in the data as well. Results from this mixed-methods study suggest that isolation is a main concern for Palestinians, resulting from barriers in policies of occupation that affect health and access to health care. Another concept emerging from the analysis was tactics and strategies against occupation in society.

scholarly journals Impact of superimposed nephrological care to guidelines-directed management by primary care physicians of patients with chronic kidney disease: a randomized controlled trial

2019 ◽  
Author(s):  
Patrick Saudan ◽  
Belen Ponte ◽  
Nicola Marangon ◽  
Chantal Martinez ◽  
Lena Berchtold ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Primary Care Physicians ◽  
Clinical Care ◽  
Randomised Trial ◽  
Dialysis Initiation ◽  
The Impact

Abstract Background: Optimal clinical care of patients with chronic kidney disease (CKD) requires collaboration between primary care physicians (PCP) and nephrologists. We undertook a randomised trial to determine the impact of superimposed nephrologist care compared to guidelines-directed management by PCPs in CKD patients after hospital discharge. Methods: Stage 3b-4 CKD patients were enrolled during a hospitalization and randomised in two arms: Co-management by PCPs and nephrologists (interventional arm) versus management by PCPs with written instructions and consultations by nephrologists on demand (standard care). Our primary outcome was death or rehospitalisation within the 2 years post-randomisation. Secondary outcomes were: urgent renal replacement therapy (RRT), decline of renal function and decrease of quality of life at 2 years. Results: From November 2009 to the end of June 2013, we randomised 242 patients. Mean follow-up was 51 + 20 months. Survival without rehospitalisation, GFR decline and elective dialysis initiation did not differ between the two arms. Quality of life was also similar in both groups . Compared to randomised patients, those who either declined to participate in the study or were previously known by nephrologists had a worse survival. Conclusion: These results do not demonstrate a benefit of a regular renal care compared to guided PCPs care in terms of survival or dialysis initiation in CKD patients. Increased awareness of renal disease management among PCPs may be as effective as a co-management by PCPs and nephrologists in order to improve the prognosis of moderate-to-severe CKD.

scholarly journals Mobile Midwesterners: The Impact of Migration on Aging, Health, and Community

2013 ◽  
Vol 34 (1) ◽  
pp. 6-17 ◽  
Author(s):  
Matthew Dalstrom
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Access To Health Care ◽  
Family Members ◽  
Seasonal Migration ◽  
Retirement Communities ◽  
Health Seeking ◽  
Health Seeking Behaviors ◽  
The Impact

As the population in the US ages, there is increasing need to study aging and its relationship to quality of life, health, and community. Quality of life is closely correlated with belonging to a community. Unfortunately, as seniors age there is a propensity for them to become increasingly isolated as their mobility decreases and their friends and family members die or move away. As a result, some seniors in the Midwest have begun to migrate to RV parks in the Lower Rio Grande Valley (“LRGV”) in south Texas that function as temporary retirement communities for the winter. While there, they reconnect with friends and family members and engage in a variety of social, civic, and exercise related activities. Further, they participate in a variety of health seeking behaviors such as health screenings, trading medications, and using the Mexican health care system. This article explores these practices and discusses how Winter Texans choose the LRGV, how new members become integrated into RV parks, and how life in the parks impacts health and access to health care services. It also highlights the impact that seasonal migration has on community formation, health seeking behaviors, and the diversity of retirement communities.

scholarly journals Impact of superimposed nephrological care to guidelines-directed management by primary care physicians of patients with stable chronic kidney disease: a randomized controlled trial

2019 ◽  
Author(s):  
Patrick Saudan ◽  
Belen Ponte ◽  
Nicola Marangon ◽  
Chantal Martinez ◽  
Lena Berchtold ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Primary Care Physicians ◽  
Clinical Care ◽  
Randomised Trial ◽  
Dialysis Initiation ◽  
The Impact

Abstract Background: Optimal clinical care of patients with chronic kidney disease (CKD) requires collaboration between primary care physicians (PCP) and nephrologists. We undertook a randomised trial to determine the impact of superimposed nephrologist care compared to guidelines-directed management by PCPs in CKD patients after hospital discharge. Methods: Stage 3b-4 CKD patients were enrolled during a hospitalization and randomised in two arms: Co-management by PCPs and nephrologists (interventional arm) versus management by PCPs with written instructions and consultations by nephrologists on demand (standard care). Our primary outcome was death or rehospitalisation within the 2 years post-randomisation. Secondary outcomes were: urgent renal replacement therapy (RRT), decline of renal function and decrease of quality of life at 2 years. Results: From November 2009 to the end of June 2013, we randomised 242 patients. Mean follow-up was 51 + 20 months. Survival without rehospitalisation, GFR decline and elective dialysis initiation did not differ between the two arms. Quality of life was also similar in both groups . Compared to randomised patients, those who either declined to participate in the study or were previously known by nephrologists had a worse survival. Conclusion: These results do not demonstrate a benefit of a regular renal care compared to guided PCPs care in terms of survival or dialysis initiation in CKD patients. Increased awareness of renal disease management among PCPs may be as effective as a co-management by PCPs and nephrologists in order to improve the prognosis of moderate-to-severe CKD.

A Randomized Controlled Trial to Investigate the Impact of Tango Argentino versus Tai Chi on Quality of Life in Patients with Parkinson Disease: A Short Report

2019 ◽  
Vol 26 (6) ◽  
pp. 398-403 ◽  
Author(s):  
Désirée Poier ◽  
Daniela Rodrigues Recchia ◽  
Thomas Ostermann ◽  
Arndt Büssing
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Parkinson Disease ◽  
Tai Chi ◽  
Clinical Care ◽  
Well Being ◽  
Short Report ◽  
Randomized Controlled ◽  
The Impact

Objectives: Parkinson disease (PD) is a neurodegenerative disorder with increasing impairments in disease progression. The aim of the pilot study was to investigate the influence of Tango argentino on the quality of life of people with PD compared to Tai Chi. Design, Setting, Interventions: In the two-arm, randomized controlled pilot study, patients with PD received a 10-week Tango argentino or Tai Chi intervention (once per week, 60 min each). Main Outcome Measures: The outcome parameters were assessed at three time points (after the 1st course, after the 5th course, and after the 10th course) using standardized instruments, i.e., Parkinson’s Disease Questionnaire-39 (PDQ-39), Brief Multidimensional Life Satisfaction Scale (BMLSS), Inner Congruence with Practices (ICPH). Results: Overall, 14 patients and their partners received Tango argentino (9 male, 5 female; mean age: 69 ± 8 years) and 15 received Tai Chi (3 male, 12 female; mean age: 69 ± 11 years). Four patients in each group were lost during the trial. No improvements were found in both groups for all outcomes. Patients in the tango group reported better emotional well-being (p = 0.039) after 10 weeks of intervention compared to the Tai Chi group. Conclusions: Further studies are needed taking into account findings from this study to improve recruitment and attrition of patients during the trial and to justify the potential implementation of Tango argentino into clinical care.

scholarly journals The Impact of the Timing of Health-Related Quality of Life Assessments on the Actual Results in Glioma Patients: A Randomized Prospective Study

Cancers ◽  
2020 ◽  
Vol 12 (8) ◽  
pp. 2172
Author(s):  
Marthe C.M. Peeters ◽  
Hanneke Zwinkels ◽  
Johan A.F. Koekkoek ◽  
Maaike J. Vos ◽  
Linda Dirven ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Care ◽  
Depression Scale ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Hrqol Scale

Background: The aim of this study was to explore the impact of the timing of Health-Related Quality of Life (HRQoL) measurements in clinical care on the obtained HRQoL scores in glioma patients, and the association with feelings of anxiety or depression. Methods: Patients completed the European Organisation for Research and Treatment of Cancer (EORTC)’s Quality of Life Questionnaires (QLQ-C30 and QLQ-BN20), and the Hospital Anxiety and Depression Scale (HADS) twice. All patients completed the first measurement on the day of the Magnetic Resonance Imaging (MRI) scan (t = 0), but the second measurement (t = 1) depended on randomization; Group 1 (n = 49) completed the questionnaires before and Group 2 (n = 51) after the consultation with the physician. Results: median HRQoL scale scores on t0/t1 and change scores were comparable between the two groups. Between 8–58% of patients changed to a clinically relevant extent (i.e., ≥10 points) on the evaluated HRQoL scales in about one-week time, in both directions, with only 3% of patients remaining stable in all scales. Patients with a stable role functioning had a lower HADS anxiety change score. The HADS depression score was not associated with a change in HRQoL. Conclusions: Measuring HRQoL before or after the consultation did not impact HRQoL scores on a group level. However, most patients reported a clinically relevant difference in at least one HRQoL scale between the two time points. These findings highlight the importance of standardized moments of HRQoL assessments, or patient-reported outcomes in general, during treatment and follow-up in clinical trials.

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