OP16 A Patient-centered Value Framework For Healthcare In Hemophilia

2017 ◽  
Vol 33 (S1) ◽  
pp. 8-9 ◽  
Author(s):  
Brian O'Mahony ◽  
Gerard Dolan ◽  
Diane Nugent ◽  
Clifford Goodman
Keyword(s):  
Quality Of Life ◽  
Healthcare Delivery ◽  
Joint Damage ◽  
Developed Countries ◽  
Pathogen Transmission ◽  
Patient Centered ◽  
Access To Treatment ◽  
Age Related

INTRODUCTION:Hemophilia is a rare, inherited bleeding disorder affecting an estimated 400,000 people worldwide (1). Characterized by spontaneous bleeding and long-term, irreversible joint damage, persons with hemophilia are often limited in normal day-to-day activities, including work/school, and require comprehensive care at specialized treatment centers. With replacement therapies extending survival by decades and vastly improving quality of life (QoL), routine prophylaxis is considered the standard-of-care in developed countries. However, due to the cost of replacement factor, access to treatment remains a challenge, and increased scrutiny over funding has been augmented by growing demands on healthcare budgets (2). Thus, the hemophilia community shares a unified goal of objectively defining patient-centered value in hemophilia care.METHODS:Using a three-tiered outcomes hierarchy model initially described by Porter (3), an international, multidisciplinary panel of health economics outcomes researchers and hemophilia experts developed a value framework for decision makers to assess value of various healthcare interventions in hemophilia.RESULTS:The three tiers for assessing value are: (i) Health status achieved/retained; (ii) Process of recovery; and (iii) Sustainability of health. Tier one measures survival, quality of life (QoL), and hemophilia-specific outcomes of bleeding frequency, musculoskeletal complications, and severe bleeds, as well as function/activity (that is, lifestyle impairment). Tier two measures time to initial treatment or recovery and time missed at education/work, as well as disutility of care (that is, inhibitor development, pathogen transmission/infections, orthopedic intervention, and venous access). Tier three measures avoidance of bleeds, maintenance of productive lives, and long-term health, while capturing long-term consequences of insufficient therapy or age-related complications. Applicability of the framework can be demonstrated in areas of healthcare delivery, treatment regimen, and innovation for new therapies.CONCLUSIONS:This value framework represents an initial collaboration with stakeholders to define and organize an array of patient-centric outcomes of importance in hemophilia into a practical tool that can influence treatment and funding decisions in hemophilia care.

Quality of life and patient-centered outcomes following atrial fibrillation ablation: short- and long-term perspectives to improving care

2012 ◽  
Vol 10 (7) ◽  
pp. 889-900 ◽  
Author(s):  
Sanghamitra Mohanty ◽  
Luigi Di Biase ◽  
Rong Bai ◽  
Pasquale Santangeli ◽  
Agnes Pump ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Atrial Fibrillation Ablation ◽  
Patient Centered ◽  
Short And Long Term

scholarly journals Long-Term Effects of Kasai Portoenterostomy for Biliary Atresia Treatment in Russia

Diagnostics ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. 686
Author(s):  
Anna Degtyareva ◽  
Alexander Razumovskiy ◽  
Nadezhda Kulikova ◽  
Sergey Ratnikov ◽  
Elena Filippova ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Survival Rate ◽  
Biliary Atresia ◽  
Kasai Portoenterostomy ◽  
Critical Importance ◽  
Long Term Effects ◽  
Age Related

This prospective study enrolled 144 patients after surgical treatment of biliary atresia in early infancy. We analyzed the immediate effectiveness of the surgery and the age-related structure of complications in the up to 16-year follow-up. The immediate 2-year survival rate after the surgery constituted 49.5%. At the time of this writing, 17 of the patients had celebrated their 10th birthdays with good quality of life and no indications for transplantation of the liver. The obtained results underscore the critical importance of surgical correction of biliary atresia by Kasai surgery in the first 60 days of life and subsequent dynamic follow-up of patients for the purpose of the early detection and timely correction of possible complications.

Impact of age-related socio-economic and clinical determinants of quality of life among long-term breast cancer survivors

Maturitas ◽  
2015 ◽  
Vol 81 (3) ◽  
pp. 362-370 ◽  
Author(s):  
Pegdwende Olivia Dialla ◽  
Wai-On Chu ◽  
Patrick Roignot ◽  
Marie-Christine Bone-Lepinoy ◽  
Marie-Laure Poillot ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Age Related

scholarly journals “You’re only a carrier” – women and the language of haemophilia

2021 ◽  
Vol 8 (1) ◽  
pp. 128-132
Author(s):  
Steve Chaplin ◽  
Kate Khair
Keyword(s):  
Quality Of Life ◽  
Factor Viii ◽  
Strong Evidence ◽  
18Th Century ◽  
Joint Damage ◽  
Gene Variant ◽  
Factor Viii Activity ◽  
Impaired Quality

Abstract Women who have the gene variant for haemophilia are labelled solely as ‘carriers’ unless they have a factor VIII activity of ≤40%. This term, which describes an individual who can pass on a disorder but are themselves unaffected, reflects a legacy that extends from the 18th century to the present day. There is strong evidence that women labelled as carriers experience heavy periods, joint damage, pain and impaired quality of life. The label ‘carrier’ does not recognise this burden and is associated with guilt, stigma and difficulty accessing care. People living with a long-term disorder should now be described using person-first terminology and it is common to see the term ‘people with haemophilia’. The term ‘carrier’ should be limited to its application in genetics and not used as a catch-all label for women with haemophilia.

Providing dignified continence care to older people at end of life

2019 ◽  
Vol 25 (10) ◽  
pp. 504-512 ◽  
Author(s):  
Linda Nazarko
Keyword(s):  
Quality Of Life ◽  
Older People ◽  
End Of Life ◽  
Older Person ◽  
Entire Family ◽  
Long Term Conditions ◽  
Age Related ◽  
Age Related Changes

The prevalence of urinary incontinence increases as a person ages, as age-related changes make it more difficult to maintain continence. Long-term conditions and treatments prescribed to treat conditions, such as heart failure, can lead to an urgency to void the bladder. Frailty can make it difficult for an older person to respond this need. At end of life, mobility is often compromised and people can experience extreme fatigue. Caregivers can obtain support to manage an individual's incontinence during the day but often struggle alone at night. Caregivers can become exhausted and a situation can reach breaking point. Working with the older person and caregivers to determine the goals of care and how to meet them can make a huge difference. It can take the pressure off the entire family, meet a person's needs and enable the person to stay at home. This article aims to enable nurses to understand the problems older people may experience and how to work with the older person and caregivers to develop solutions that maintain dignity and enhance quality of life.

Long-Term Forecasting of World Economy

2014 ◽  
pp. 5-14
Author(s):  
Y. Lukashin ◽  
L. Rakhlina
Keyword(s):  
Quality Of Life ◽  
Life Quality ◽  
Developed Countries ◽  
New Era ◽  
Spare Time ◽  
Processing Gain ◽  
Long Term Forecasting ◽  
High Level

The paper considers contemporary approaches of long-term forecasting of world and national economics. Foreign practice is of especial interest of authors. Researches and results of PricewaterhouseCoopers and Goldman Sachs are exposed in details. Authors make the following conclusions: a production function model is used often to generate forecasts. The parameters of these models are postulated by experts in coincidence with their scenario of World development. Main indicators to forecast are GDP, GDP per capita and changes in country ranks. Authors consider GDP as not ideal indicator for the goal since it may be calculated by three methods. Besides, it has different structure and quality in different countries. Authors point to the need for estimation and comparison of quality of life. They suggest to take into account the revolutionary changing in technologies and to schedule the optimum and the most realistic path to improve the quality of life. Authors suggest that the most developed countries are entering a new era when robots will work more and more instead of people in industry, agriculture, and services. Many operations in control, management and data processing gain higher productivity due to endless progress in computer science. As a result authors foresee further shortening of the working week. On their opinion this is the way which leads to real success in struggle against unemployment. ICT technologies enable many employees to work now at home. Growing of spare time leads to new pattern of life, new possibilities of education, new types of creative work, new possibilities of communication, additional possibilities for health care, high level of life quality. So far, comparison of national economy development on the basis of measuring GDP seems to become obsolete and irrelevant to current social and economic conditions. Now we can expect to see negative rates of GDP growth and augmentation of life quality. Thus, to construct the countries’ ranks in world competition correctly it is of great importance to take into account the social factors and the role of innovation technologies in world economic development.

scholarly journals Greco-Arab and Islamic Herbal-Derived Anticancer Modalities: From Tradition to Molecular Mechanisms

2012 ◽  
Vol 2012 ◽  
pp. 1-13 ◽  
Author(s):  
Hilal Zaid ◽  
Michael Silbermann ◽  
Eran Ben-Arye ◽  
Bashar Saad
Keyword(s):  
Quality Of Life ◽  
Molecular Mechanisms ◽  
Developed Countries ◽  
Anticancer Activities ◽  
Cancer Etiology ◽  
Duration Of Treatment ◽  
Patient Centered ◽  
Islamic Medicine ◽  
Therapeutic Modalities

The incidence of cancer is increasing in the developed countries and even more so in developing countries parallel to the increase in life expectancy. In recent years, clinicians and researchers advocate the need to include supportive and palliative care since the establishment of the diagnosis and throughout the duration of treatment, with the goal of improving patients' quality of life. This patient-centered approach in supportive care is also shared by various traditional and complementary medicine approaches. Traditional Arab-Islamic medicine offers a variety of therapeutic modalities that include herbal, nutritional, and spiritual approaches. Physicians and scholars, such as Avicenna (980–1037), Rhazes (965–915), Al Zahrawi (936–1013), and Ibn al Nafis (1218–1288) referred to cancer etiology in various medicinal texts and suggested both preventive and therapeutic remedies to alleviate suffering. This review presents research data related to the anticancer activities of herbs used in Arab-Islamic medicine and allude to their potential role in improving the quality of life of cancer patients.

scholarly journals Long-Term Effects of Kasai Portoenterostomy for Biliary Atresia

2020 ◽  
Author(s):  
Anna Degtyareva ◽  
Alexander Razumovskiy ◽  
Nadezhda Kulikova ◽  
Sergey Ratnikov ◽  
Elena Filippova ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Survival Rate ◽  
Biliary Atresia ◽  
Kasai Portoenterostomy ◽  
Critical Importance ◽  
Long Term Effects ◽  
Age Related

The prospective study enrolled 144 patients after surgical treatment of biliary atresia in early infancy. We analyze the immediate effectiveness of the surgery and the age-related structure of complications in the up to 16-year follow-up. The immediate 2-year survival rate after the surgery constituted 49.5%. At the time of this writing, 17 of the patients have celebrated their 10th birthdays with good quality of life and no indications for LT. The obtained results underscore the critical importance of surgical correction of BA by Kasai surgery during the first 60 days of life and subsequent dynamic follow-up of the patients for the purpose of the early detection and timely correction of possible complications.

scholarly journals Gearing towards Sustainable Indigenous Elderly Quality of Life: A Systematic Review

2021 ◽  
Vol 7 (2) ◽  
pp. 105-109
Author(s):  
Noorain Mohamad Yunus ◽  
Ernee Suzila Kassim ◽  
Naffisah Mohd Hassan ◽  
Syukrina Alini Mat Ali ◽  
Siti Noorsuriani Maon ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Policy Development ◽  
Healthcare Delivery ◽  
Developed Countries ◽  
Future Research ◽  
Physical And Mental Health ◽  
Health And Wellbeing ◽  
Elderly Health

Indigenous elderly is one of the most medically underserved groups and are often left out, which resulted in significant health disparities. Besides, research on the indigenous elderly health and wellbeing is somewhat limited despite the world slogan of health equity for social sustainability.  Hence, having to assess the health status of the group will make a balanced effort for improving their overall quality of life. This paper aims to evaluate and synthesise the indigenous elderly health and wellbeing by using the systematic review of Scopus-indexed publications, published from 2003 to November 2020. Ninety-three articles served as the initial data, but only 22 articles were eligible to be used for the analyses of 1) perception and beliefs on health behaviour, 2) physical and mental health practices, 3) impactful studies and 4) implications of the studies towards policy and healthcare delivery. The findings revealed developed countries like the USA, Canada, and New Zealand have placed greater efforts in voicing out the group needs. Suggestions for future research are to focus on intervention programs and improvement of the healthcare policy development for the indigenous elderly ease of access to healthcare, fundamental for reducing the social gaps.

Sign in / Sign up

Export Citation Format

Share Document