This article explores what can be learned from the evolution of rural gerontology as a field of study to inform a more critical approach to the health of rural older adults. To counter the prevailing ...essentialism of highlighting the rural health disparities faced by older adults, there is a need to expand rural gerontological health research beyond deficit and medicalized understandings of health in rural communities. We argue that appreciating the interplay between unique health experiences, the complexity of the rural context and the continuum of older adult care is an important next step to foster advances in the field. Emergent questions for research, policy and practice are discussed and new directions for rural gerontological health are proposed.
•A critical approach is needed to enhance rural gerontological health research.•This relational approach appreciates individual health experiences and rural contexts.•Rural older adult health needs to be recognized as multidimensional and dynamic.•This new approach will uncover key insights into research, policy and practice.
Despite prior research that examines the spatial and temporal dimensions of older adult care, there is disparate research on the influence of patient flow priorities on older adult care over time and ...place. Drawing on a qualitative case study of rural older adult transitions in care in the Canadian context we examine how patient flow prioritization undervalues older patients’ needs and the local contexts in which care is provided. Certainly, accounting for the spatial and temporal dimensions of older adult care has broader implications that will enhance future research, policy and practice. Policy makers, researchers and clinicians may then use these recommendations as a stepping stone to align the health care system with the older populations that they serve.
•We examine the impact of bed flow priorities on older adult transitional care.•Bed flow priorities focus on moving older adults through the hospital system.•This focus of care undermines older adults' needs, goals, and preferences.•These priorities do not consider local care contexts after hospital discharge.•Bed flow priorities lead to ineffective and inefficient care over time and place.
Genomic and gene‐targeted therapies hold great promise in addressing the global issue of rare diseases. To achieve this promise, however, it is critical the twin goals of equity in access to testing ...and diagnosis, and equity in access to therapy be considered early in the life cycle of development and implementation. Rare disease researchers and clinicians must simultaneously recognize the life‐altering potential of early diagnosis and administration of gene‐targeted therapeutics while acknowledging that not everyone who experiences a rare disease and needs these therapies will be able to afford or access them. Achieving equity in the development of and access to gene‐targeted therapies will not only require innovations in research, clinical, regulatory, and reimbursement frameworks, but will also necessitate increased attention to the ethical, legal, and social implications when establishing research paradigms and the translation of research results into novel interventions for rare genetic diseases. This article highlights and discusses the growing importance and recognition of health equity across the spectrum of rare disease research and care delivery.
Abstract
Background and Objectives
Dance is increasingly being implemented in residential long-term care to improve health and function. However, little research has explored the potential of dance ...to enhance social inclusion by supporting embodied self-expression, creativity, and social engagement of persons living with dementia and their families.
Research Design and Methods
This was a qualitative sequential multiphase study of Sharing Dance Seniors, a dance program that includes a suite of remotely streamed dance sessions that are delivered weekly to participants in long-term care and community settings. Our analysis focused on the participation of 67 persons living with dementia and 15 family carers in residential long-term care homes in Manitoba, Canada. Data included participant observation, video recordings, focus groups, and interviews; all data were analyzed thematically.
Results
We identified 2 themes: playfulness and sociability. Playfulness refers to the ways that the participants let go of what is “real” and became immersed in the narrative of a particular dance, often adding their own style. Sociability captures the ways in which the narrative approach of the Sharing Dance Seniors program encourages connectivity/intersubjectivity between participants and their community; participants co-constructed and collaboratively animated the narrative of the dances.
Discussion and Implications
Our findings highlight the playful and imaginative nature of how persons living with dementia engage with dance and demonstrate how this has the potential to challenge the stigma associated with dementia and support social inclusion. This underscores the urgent need to make dance programs such as Sharing Dance Seniors more widely accessible to persons living with dementia everywhere.
Summary
For nearly 50 years, the goal of the World Federation of Hemophilia (WFH) has been to achieve ‘Treatment for All’ patients with inherited bleeding disorders, regardless of where they live. ...With proper diagnosis, management and care, people with bleeding disorders can live perfectly healthy lives. Without treatment, the reality is that many will die young or, if they survive, suffer joint damage that leaves them with permanent disabilities. Only about 25% of the estimated 400 000 people with haemophilia worldwide receive adequate treatment. The percentage is far lower for those with von Willebrand Disease (VWD) and the rarer bleeding disorders. The achievements of the WFH to close the gap in care for people with bleeding disorders are measureable over time by using three key indicators; the difference in the estimated and actual number of people known with bleeding disorders, the amount of treatment products needed versus that available, and the number of people born with bleeding disorders and the number who reach adulthood. There are five essential elements to achieve a sustainable national care programme: ensuring accurate laboratory diagnosis, achieving government support, improving the care delivery system, increasing the availability of treatment products, and building a strong national patient organization.
Introduction
People with non‐severe haemophilia appear to be under‐treated in many countries, and this may lead to joint damage and worsen quality of life.
Aim
To review literature for clotting ...factor replacement prophylaxis in people with non‐severe haemophilia A and B (HA/HB) in relation to long‐term outcomes to support clinical decision‐making.
Methods
A targeted literature search was performed to identify studies published between 2000 and 2021 that included prophylaxis in people with non‐severe HA/HB and long‐term outcomes, including annualized bleeding rates, joint health and quality of life.
Results
Although eligible articles included 2737 and 2272 people with mild or moderate HA, respectively, only 22% (n = 609) and 29% (n = 668) reported treatment regimens. A total of 549 people with moderate HA were treated with factor replacement prophylaxis and were from high‐income countries. On the contrary, nearly all people with mild HA received desmopressin (n = 599). Details of treatment regimens for women with haemophilia and people with HB were sparse. Three studies provided long‐term outcomes for people with moderate haemophilia who received prophylaxis with factor concentrate, supporting early prophylaxis in people with a frequent bleeding phenotype regardless of their endogenous clotting factor level to preserve joint health.
Conclusion
There remain large knowledge gaps when considering how to provide optimal treatment for people with non‐severe haemophilia. Nonetheless, there is a strong rationale that prophylaxis should be considered early in life according to similar strategies as for severe haemophilia for those with a frequent severe bleeding phenotype.
Hemophilia gene therapy: first, do no harm Valentino, Leonard A.; Kaczmarek, Radoslaw; Pierce, Glenn F. ...
Journal of thrombosis and haemostasis,
09/2023, Letnik:
21, Številka:
9
Journal Article
Recenzirano
Odprti dostop
The introduction of adeno-associated virus–mediated, liver-directed gene therapy into the hemophilia treatment landscape brings not only great promise but also considerable uncertainty to a community ...that has a history punctuated by the devastating effects of HIV and hepatitis C virus. These infections were introduced into people with hemophilia through the innovation of factor concentrates in the 1970s and 1980s. Concentrates, heralded as a major advance in treatment at the time, brought devastation and death to the community already challenged by the complications of bleeding into joints, vital organs, and the brain. Over the past 5 decades, considerable advances in hemophilia treatment have improved the survival, quality of life, and participation of people with hemophilia, although challenges remain and health equity with their unaffected peers has not yet been achieved. The decision to take a gene therapy product is one in which an informed, holistic, and shared decision-making approach must be employed. Bias on the part of health care professionals and people with hemophilia must be addressed and minimized. Here, we review data leading to the regulatory authorization of valoctocogene roxaparvovec, an adeno-associated virus 5 gene therapy, in Europe to treat hemophilia A and etranacogene dezaparvovec-drlb in the United States and Europe to treat hemophilia B. We also provide an overview of the decision-making process and recommend steps that should be taken by the hemophilia community to ensure the safety of and optimal outcomes for people with hemophilia who choose to receive a gene therapy product.
Orangutans (Pongo sp.) show among the highest occurrence of three types of developmental enamel defect. Two are attributed to nutritional factors that reduce bone growth in the infant's face early in ...development. Their timing and prevalence indicate that Sumatra provides a better habitat than does Borneo. The third type, repetitive linear enamel hypoplasia (rLEH) is very common but its etiology is not understood. Our objective is to draw attention to this enigmatic, episodic stressor in the lives of orangutans. We are concerned that neglect of this possible marker of ill health may be contributing, through inaction, to their alarming decline in numbers. Width and depth of an LEH are considered proxies for duration and intensity of stress. The hypothesis that Bornean orangutans would exhibit relatively wider and deeper LEH was tested on 163 independent episodes of LEH from 9 Sumatran and 26 Bornean orangutans measured with a NanoFocus AG “µsurf Mobile Plus” scanner. Non‐normally distributed data (depths) were converted to natural logs. No difference was found in width of LEH among the two island taxa; nor are their differences in width or depth between the sexes. After controlling for significant differences in LEH depths between incisors and canines, defects are, contrary to prediction, significantly deeper in Sumatran than Bornean animals (median = 28, 18 µm, respectively). It is concluded that repetitive LEH records an unknown but significant stressor present in both Sumatra and Borneo, with an average periodicity of 6 months (or multiples thereof) that lasts about 6–8 weeks. It is worse in Sumatra. Given this patterning, shared with apes from a wide range of ecological and temporal sources, rLEH is more likely attributable to disease than to malnutrition.
Orangutans are disappearing for largely known reasons. Most dental defect types support Sumatra being deemed a better habitat than Borneo. However, one enigmatic defect, repetitive linear enamel hypoplasia, occurs on both islands but is more severe in Sumatra.
The World Federation of Hemophilia Annual Global Survey 1999‐2018 Stonebraker, Jeffrey S.; Bolton‐Maggs, Paula H. B.; Brooker, Mark ...
Haemophilia : the official journal of the World Federation of Hemophilia,
July 2020, 2020-Jul, 2020-07-00, 20200701, Letnik:
26, Številka:
4
Journal Article
Recenzirano
Odprti dostop
Introduction
The World Federation of Hemophilia (WFH) strives to achieve care for all patients with inherited bleeding disorders through research, advocacy, capacity building and education. The WFH ...developed and implemented the Annual Global Survey (AGS), through which comprehensive demographic and treatment data on bleeding disorders are collected each year from its constituent non‐governmental national organizations.
Aim
To describe the development, methodology and achievements of the WFH AGS over the past 20 years.
Methods
The AGS is a yearly cross‐sectional survey. Data are collected using a standardized form (available online and on paper), quality checked and reviewed, and published in English, French and Spanish. Over time, the AGS has been modified in response to changes in treatment landscape or emerging new issues.
Results
Over the past 20 years, the AGS has reported an increase in the number of countries participating in the survey, a tripling in the number of people identified with rare bleeding disorders and an increase in the amount of factor used to treat people with haemophilia. Yet, a large treatment inequity gap still exists across the globe. In response to this gap, the WFH has analysed the AGS reports which has stimulated further development in quality of care indicators, estimates of the global prevalence of haemophilia, patient‐level data collection efforts like the World Bleeding Disorders Registry and the Gene Therapy Registry.
Conclusion
The AGS has provided evidence to support research, programme planning and development activities of the WFH.
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