I Only Want to See You—A Challenge of Long-term Clinician-Patient Relationships in Team-Based Clinical Care

2021 ◽  
Author(s):  
Jeffrey H. Millstein
2021 ◽  
Vol 13 ◽  
pp. 1759720X2110069
Author(s):  
Rebecca J. Moon ◽  
Elizabeth M. Curtis ◽  
Stephen J. Woolford ◽  
Shanze Ashai ◽  
Cyrus Cooper ◽  
...  

Optimisation of skeletal mineralisation in childhood is important to reduce childhood fracture and the long-term risk of osteoporosis and fracture in later life. One approach to achieving this is antenatal vitamin D supplementation. The Maternal Vitamin D Osteoporosis Study is a randomised placebo-controlled trial, the aim of which was to assess the effect of antenatal vitamin D supplementation (1000 IU/day cholecalciferol) on offspring bone mass at birth. The study has since extended the follow up into childhood and diversified to assess demographic, lifestyle and genetic factors that determine the biochemical response to antenatal vitamin D supplementation, and to understand the mechanisms underpinning the effects of vitamin D supplementation on offspring bone development, including epigenetics. The demonstration of positive effects of maternal pregnancy vitamin D supplementation on offspring bone development and the delineation of underlying biological mechanisms inform clinical care and future public-health policies.


Author(s):  
Thomas L Rodebaugh ◽  
Madelyn R Frumkin ◽  
Angela M Reiersen ◽  
Eric J Lenze ◽  
Michael S Avidan ◽  
...  

Abstract Background The symptoms of COVID-19 appear to be heterogenous, and the typical course of these symptoms is unknown. Our objectives were to characterize the common trajectories of COVID-19 symptoms and assess how symptom course predicts other symptom changes as well as clinical deterioration. Methods 162 participants with acute COVID-19 responded to surveys up to 31 times for up to 17 days. Several statistical methods were used to characterize the temporal dynamics of these symptoms. Because nine participants showed clinical deterioration, we explored whether these participants showed any differences in symptom profiles. Results Trajectories varied greatly between individuals, with many having persistently severe symptoms or developing new symptoms several days after being diagnosed. A typical trajectory was for a symptom to improve at a decremental rate, with most symptoms still persisting to some degree at the end of the reporting period. The pattern of symptoms over time suggested a fluctuating course for many patients. Participants who showed clinical deterioration were more likely to present with higher reports of severity of cough and diarrhea. Conclusion The course of symptoms during the initial weeks of COVID-19 is highly heterogeneous and is neither predictable nor easily characterized using typical survey methods. This has implications for clinical care and early-treatment clinical trials. Additional research is needed to determine whether the decelerating improvement pattern seen in our data is related to the phenomenon of patients reporting long-term symptoms, and whether higher symptoms of diarrhea in early illness presages deterioration.


Author(s):  
Dinesh Nagi ◽  
Emma Wilmot ◽  
Karissa Owen ◽  
Dipesh Patel ◽  
Lesley Mills ◽  
...  

At the time of submission of this manuscript, the COVID-19 pandemic had cost nearly 60,000 lives in the UK. This number currently stands at over 120,000 deaths. A high proportion (one third) of these lived with diabetes. The huge acute and emergency medicine effort to support people with COVID-19 has had a major knock-on impact on the delivery of routine clinical care, especially for long-term conditions like diabetes.Challenges to the delivery of diabetes services during this period include a reduction in medical and nursing staff, limitations placed by social distancing on physical clinical space, and balancing virtual vs face-to-face care. There is a need to re-group and re-organise how we deliver routine out-patient adult diabetes services during the ongoing COVID-19 pandemic. We offer some suggestions for how patients can be stratified into red (urgent), amber (priority) and green (routine) follow up with suggestions of how often people should be seen. We also offer recommendation on how we can identify those at highest risk and try and minimise the long- term impact of COVID on diabetes careDuring the COVID pandemic we have seen things happen in days that previously took years. The restart of diabetes services has triggered a more widespread use of virtual consultations and data management systems, but also offers an opportunity for more joined-up and cohesive working between primary and specialist care. While we do our best to keep our patients and colleagues safe, this pandemic is already proving to be a catalyst for change, accelerating the appropriate use of technology in diabetes care and implementing innovative solutions. To achieve this aspiration, further work – currently led by the Association of British Clinical Diabetologists in collaboration with Diabetes UK and the Primary Care Diabetes Society – to make recommendations on future proofing diabetes care in UK is in progress.


2020 ◽  
Author(s):  
Julia Hennermann ◽  
Nathalie Guffon ◽  
Federica Cattaneo ◽  
Ferdinando Ceravolo ◽  
Line Borgwardt ◽  
...  

Abstract Background: Alpha-mannosidosis is a lysosomal storage disorder caused by reduced enzymatic activity of alpha-mannosidase. SPARKLE is an alpha-mannosidosis registry intended to obtain long-term safety and effectiveness data on the use of velmanase alfa during routine clinical care in patients with alpha-mannosidosis. It is a post-approval commitment to European marketing authorization for Velmanase alfa (Lamzede®), the first enzyme replacement therapy for the treatment of non-neurologic manifestations in patients with mild to moderate alpha-mannosidosis. In addition, SPARKLE will expand the current understanding of alpha-mannosidosis by collecting data on the clinical manifestations, progression, and natural history of the disease in treated and untreated patients, respectively.Results: The SPARKLE registry is designed as a multicenter, multinational, noninterventional, prospective cohort study of patients with alpha-mannosidosis, starting patient enrollment in 2020. Patients will be followed for up to 15 years. Safety and effectiveness as post-authorization outcomes under routine clinical care in patients with treatment will be evaluated. The primary safety outcomes are the rate of adverse events (anti-velmanase alfa-immunoglobulin G antibody development, infusion-related reactions, and hypersensitivity). Secondary safety outcomes include the evaluation of medical events, change in vital signs, laboratory tests, physical examination, and electrocardiogram results. The primary effectiveness outcome is a global treatment response rate, evaluated as the individual aggregate of single endpoints from pharmacodynamic, functional, and quality of life effectiveness outcomes; secondary effectiveness outcomes are to characterize the population of patients with alpha-mannosidosis with regard to clinical manifestation, progression, and natural history of the disease. Any patient in the European Union with a diagnosis of alpha-mannosidosis who is willing to participate will likely be eligible for inclusion in the registry. Publications to disseminate scientific insights from the registry are planned. Conclusion: This study will provide real-world data on the long-term safety and effectiveness of velmanase alfa in patients with alpha-mannosidosis during routine clinical care and increase the understanding of the natural course, clinical manifestations, and progression of this ultra-rare disease.


2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Julia B. Hennermann ◽  
Nathalie Guffon ◽  
Federica Cattaneo ◽  
Ferdinando Ceravolo ◽  
Line Borgwardt ◽  
...  

Abstract Background Alpha-mannosidosis is a lysosomal storage disorder caused by reduced enzymatic activity of alpha-mannosidase. SPARKLE is an alpha-mannosidosis registry intended to obtain long-term safety and effectiveness data on the use of velmanase alfa during routine clinical care in patients with alpha-mannosidosis. It is a post-approval commitment to European marketing authorization for Velmanase alfa (Lamzede®), the first enzyme replacement therapy for the treatment of non-neurologic manifestations in patients with mild to moderate alpha-mannosidosis. In addition, SPARKLE will expand the current understanding of alpha-mannosidosis by collecting data on the clinical manifestations, progression, and natural history of the disease in treated and untreated patients, respectively. Results The SPARKLE registry is designed as a multicenter, multinational, noninterventional, prospective cohort study of patients with alpha-mannosidosis, starting patient enrollment in 2020. Patients will be followed for up to 15 years. Safety and effectiveness as post-authorization outcomes under routine clinical care in patients with treatment will be evaluated. The primary safety outcomes are the rate of adverse events (anti-velmanase alfa-immunoglobulin G antibody development, infusion-related reactions, and hypersensitivity). Secondary safety outcomes include the evaluation of medical events, change in vital signs, laboratory tests, physical examination, and electrocardiogram results. The primary effectiveness outcome is a global treatment response rate, evaluated as the individual aggregate of single endpoints from pharmacodynamic, functional, and quality-of-life effectiveness outcomes; secondary effectiveness outcomes are to characterize the population of patients with alpha-mannosidosis with regard to clinical manifestation, progression, and natural history of the disease. Any patient in the European Union with a diagnosis of alpha-mannosidosis who is willing to participate will likely be eligible for inclusion in the registry. Publications to disseminate scientific insights from the registry are planned. Conclusion This study will provide real-world data on the long-term safety and effectiveness of velmanase alfa in patients with alpha-mannosidosis during routine clinical care and increase the understanding of the natural course, clinical manifestations, and progression of this ultra-rare disease.


2020 ◽  
Vol 45 (8) ◽  
pp. 579-585 ◽  
Author(s):  
David Anthony Provenzano ◽  
B Todd Sitzman ◽  
Samuel Ambrose Florentino ◽  
Glenn A Buterbaugh

The COVID-19 pandemic has resulted in significant clinical and economic consequences for medical practices of all specialties across the nation. Although the clinical implications are of the utmost importance, the economic consequences have also been serious and resulted in substantial damage to the US healthcare system, including pain practices. Outpatient pain practices have had to significantly change their clinical care pathways, including the incorporation of telemedicine. Elective medical and interventional care has been postponed. For the most part, ambulatory surgical centers have had to cease operations. As patient volumes have decreased for non-emergent elective care, the financial indicators have deteriorated. This review article will provide insight into solutions to mitigate the clinical and economic challenges induced by COVID-19. Undoubtedly, the COVID-19 pandemic will have short-term and long-term implications for all medical practices and facilities. In order to survive, medical practices will need dynamic, operational, and creative strategic plans to mitigate the disruption in medical care and pathways for successful reintegration of clinical and surgical practice.


1992 ◽  
Vol 161 (6) ◽  
pp. 802-808 ◽  
Author(s):  
E. Moore ◽  
R. A. Ball ◽  
L. Kuipers

Staff-patient relationships in long-term settings were examined in 35 staff and 61 patients. Measures were also taken of the staff's general health, their coping style in relation to work events, and job satisfaction. A range of ratings of EE was evident in staff descriptions of patients under their care. Strain and criticism in the relationship were not associated with identified stressors in the workplace, or the general health of the carer. When patients were grouped according to high-EE and low-EE interviews, there were no significant differences in their symptoms. Criticism was associated with other patient characteristics, including aggressive and attention-seeking behaviour, underactivity, and limited social interaction. The findings have implications for staff training and for the maintenance of optimal staff-patient relationships in services supporting severely disabled patients.


2019 ◽  
Vol 6 (1) ◽  
pp. e000342 ◽  
Author(s):  
Susan Manzi ◽  
Sandra Raymond ◽  
Karin Tse ◽  
Yaritza Peña ◽  
Annick Anderson ◽  
...  

ObjectiveLupus is a complex, heterogeneous autoimmune disease that has yet to see significant progress towards more timely diagnosis, improved treatment options for short-term and long-term outcomes, and appropriate access to care. The Addressing Lupus Pillars for Health Advancement (ALPHA) project is the first step in establishing global consensus and developing concrete strategies to address the challenges limiting progress.MethodsA Global Advisory Committee of 13 individuals guided the project and began barrier identification. Seventeen expert interviews were conducted to further characterise key barriers. Transcripts were analysed using Nvivo and a codebook was created containing a list of thematic ‘nodes’ (topics) and their descriptions. Findings were used to develop a final survey instrument that was fielded to a diverse, international stakeholder audience to achieve broad consensus.ResultsExpert interviews identified lupus heterogeneity as the primary barrier hindering advancement. Subsequent barriers were categorised into three areas: (1) Drug development. (2) Clinical care. (3) Access and value. The global survey received 127 completed responses from experts across 20 countries. Respondents identified barriers as high priority including the lack of biomarkers for clinical and drug development use, flawed clinical trial design, lack of access to clinicians familiar with lupus, and obstacles to effective management of lupus due to social determinants of care. Respondents also identified 30 autoimmune conditions that may be lupus-related based on overlapping features, shared autoantibodies and pathophysiology.ConclusionsALPHA is a comprehensive initiative to identify and prioritise the continuum of challenges facing people with lupus by engaging a global audience of lupus experts. It also explored views on lupus as a spectrum of related diseases. Conclusions from this effort provide a framework to generate actionable approaches to the identified high-priority barriers.


2020 ◽  
Vol 9 (5) ◽  
pp. 1736-1748
Author(s):  
Robert D. Schouten ◽  
Lucie Egberink ◽  
Mirte Muller ◽  
Cornedine J. De Gooijer ◽  
Erik van Werkhoven ◽  
...  

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