scholarly journals Underrepresented patient views and perceptions of personalized medication treatment through pharmacogenomics

2021 ◽  
Vol 6 (1) ◽  
Author(s):  
Loren Saulsberry ◽  
Keith Danahey ◽  
Brittany A. Borden ◽  
Elizabeth Lipschultz ◽  
Maimouna Traore ◽  
...  
Keyword(s):  
Clinical Care ◽  
Medication Treatment ◽  
Personalized Care ◽  
Healthcare Settings ◽  
Implementation Program ◽  
Black Patients ◽  
Support Tools ◽  
Tailored Communication ◽  
Views And Perceptions ◽  
The Impact

AbstractWithin an institutional pharmacogenomics implementation program, we surveyed 463 outpatients completing preemptive pharmacogenomic testing whose genetic results were available to providers for guiding medication treatment. We compared views and experiences from self-reported White and Black patients, including education level as a covariate across analyses. Black patients were less confident about whether their providers made personalized treatment decisions, and overwhelmingly wanted a greater role for their genetic information in clinical care. Both groups similarly reported that providers asked their opinions regarding medication changes, but White patients were more likely (59% vs. 49%, P = 0.005) to discuss the impact of personal/genetic makeup on medication response with providers, and Black patients reported initiating such discussions much less frequently (4% vs. 15%, P = 0.037). Opportunities exist for enhanced communication with underrepresented patients around personalized care. Tailored communication strategies and development of support tools employed in diverse healthcare settings may facilitate pharmacogenomically guided medication treatment that equitably benefits minority patient populations.

scholarly journals Body-Worn Sensors for Remote Monitoring of Parkinson’s Disease Motor Symptoms: Vision, State of the Art, and Challenges Ahead

2021 ◽  
pp. 1-13
Author(s):  
Silvia Del Din ◽  
Cameron Kirk ◽  
Alison J. Yarnall ◽  
Lynn Rochester ◽  
Jeffrey M. Hausdorff
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Remote Monitoring ◽  
State Of The Art ◽  
Digital Health ◽  
Clinical Care ◽  
Motor Symptoms ◽  
Personalized Care ◽  
Evaluation And Monitoring ◽  
The Impact

The increasing prevalence of neurodegenerative conditions such as Parkinson’s disease (PD) and related mobility issues places a serious burden on healthcare systems. The COVID-19 pandemic has reinforced the urgent need for better tools to manage chronic conditions remotely, as regular access to clinics may be problematic. Digital health technology in the form of remote monitoring with body-worn sensors offers significant opportunities for transforming research and revolutionizing the clinical management of PD. Significant efforts are being invested in the development and validation of digital outcomes to support diagnosis and track motor and mobility impairments “off-line”. Imagine being able to remotely assess your patient, understand how well they are functioning, evaluate the impact of any recent medication/intervention, and identify the need for urgent follow-up because things are changing? This could offer new pragmatic solutions for personalized care and clinical research. So the question remains: how close are we to achieving this? Here, we describe the state-of-the-art based on representative papers published between 2017 and 2020. We focus on remote (i.e., real-world, daily-living) monitoring of PD using body-worn sensors (e.g., accelerometers, inertial measurement units) for assessing motor symptoms and their complications. Despite the tremendous potential, existing challenges exist (e.g., validity, regulatory) that are preventing the widespread clinical adoption of body-worn sensors as a digital outcome. We propose a roadmap with clear recommendations for addressing these challenges and future directions to bring us closer to the implementation and widespread adoption of this important way of improving the clinical care, evaluation, and monitoring of PD.

scholarly journals P122: The use of decision support tools in the implementation of the Prehospital Canadian Triage Acuity Score (Pre-CTAS)

CJEM ◽  
2016 ◽  
Vol 18 (S1) ◽  
pp. S119-S119
Author(s):  
K.E. Smith ◽  
K. Lobay ◽  
M. Bullard
Keyword(s):  
Decision Support ◽  
Point Of Care ◽  
Clinical Care ◽  
Future Research ◽  
Decision Support Tools ◽  
Triage Nurse ◽  
Kappa Score ◽  
Rater Reliability ◽  
Support Tools ◽  
The Impact

Introduction: The Prehospital Canadian Triage and Acuity Scale (Pre-CTAS) is based upon, and is consistent with, the CTAS (Canadian Triage and Acuity Scale). Paramedic-assigned Pre-CTAS scores using memory compared to Triage Nurse CTAS scores have previously demonstrated moderate inter-rater reliability. This is the first study to measure the effect of two different point-of-care decision support tools on the inter-rater reliability of paramedic assigned Pre-CTAS and Triage nurse CTAS scores. Methods: Paramedics were randomized to Pre-CTAS booklet or CTAS smartphone app during the one-year study period. Pre-CTAS scores assigned on arrival at hospital (AH) were compared with Triage Nurse CTAS scores and analyzed using Cohen’s Kappa. Paramedics were then surveyed to assess the perceived utility and satisfaction with the decision support tools. Results: For 1663 patient transports, the weighted kappa score for Paramedic AH vs. Triage Nurse CTAS was fair at 0.38 (95% CI 0.35-0.41). For patients whose initial on-scene and AH Pre-CTAS scores did not change (n= 1405, 85%), Paramedic-Triage Nurse agreement was moderate at 0.43 (95% CI 0.39-0.46). The survey revealed that tools, when employed, helped assign scores; however accessing the additional resource was cumbersome or time consuming, and scores were occasionally assigned post clinical encounter. Conclusion: Point-of-care external decision support tools did not affect Pre-CTAS and ED CTAS agreement. These tools may add complexity or be perceived to add time to documentation within the delivery of clinical care if not implemented with adequate support. Future research needs to evaluate the impact of clinical decision support embedded within an electronic patient care record consistent with many ED information systems.

scholarly journals Disease monitoring of biologic treatment in IBD: early impact and future implications of COVID-19 pandemic

2020 ◽  
pp. flgastro-2020-101563
Author(s):  
Stephanie Shields ◽  
Allan Dunlop ◽  
John Paul Seenan ◽  
Jonathan Macdonald
Keyword(s):  
Clinical Care ◽  
Chronic Illnesses ◽  
Therapeutic Drug ◽  
Disease Monitoring ◽  
Biologic Treatment ◽  
Faecal Calprotectin ◽  
Routine Clinical Care ◽  
Risk Of Disease ◽  
Inflammatory Bowel ◽  
The Impact

COVID-19 has dominated life in 2020 with, at the time of writing, over 4.9M global cases and >320 000 deaths. The impact has been most intensely felt in acute and critical care environments. However, with most UK elective work postponed, laboratory testing of faecal calprotectin halted due to potential risk of viral transmission and non-emergency endoscopies and surgeries cancelled, the secondary impact on chronic illnesses such as inflammatory bowel disease (IBD) is becoming apparent. Data from the Scottish Biologic Therapeutic Drug Monitoring (TDM) service shows a dramatic drop in TDM testing since the pandemic onset. April 2020 saw a 75.6% reduction in adalimumab testing and a 36.2% reduction in infliximab testing when compared with February 2020 data, a reduction coinciding with the widespread cancellation of outpatient and elective activity. It is feared that disruption to normal patterns of care and disease monitoring of biologic patients could increase the risk of disease flare and adverse clinical outcomes. Urgent changes in clinical practice have been instigated to mitigate the effects of the pandemic on routine clinical care. Further transformations are needed to maintain safe, effective, patient-centred IBD care in the future.

scholarly journals Droperidol dropped; consultants not consulted

2003 ◽  
Vol 27 (08) ◽  
pp. 301-304
Author(s):  
Gavin Reid ◽  
Mark Hughson
Keyword(s):  
Questionnaire Survey ◽  
Clinical Care ◽  
Postal Questionnaire ◽  
Clinical Implications ◽  
The West ◽  
Abrupt Withdrawal ◽  
Before And After ◽  
Adequate Evaluation ◽  
Psychiatric Profession ◽  
The Impact

Aims and Method We conducted a postal questionnaire survey of the practice of rapid tranquillisation among 215 consultant psychiatrists in the West of Scotland, before and after the withdrawal of droperidol by the manufacturer. Results One hundred and eighty questionnaires (84% of those sent) were returned. Droperidol had been used extensively, often combined with lorazepam, for rapid tranquillisation. The main replacement suggested for droperidol was haloperidol. About half of the respondents to our survey chose to comment on the withdrawal of droperidol. More than half of the comments were unfavourable, including lack of an adequate replacement and lack of consultation with the psychiatric profession. Clinical Implications The abrupt withdrawal of droperidol, partly for commercial reasons, was regrettable. There was no time for an adequate evaluation of possible replacement medications and a lack of consultation with the profession regarding the impact on clinical care.

scholarly journals Ethnicity and outcomes in patients hospitalised with COVID-19 infection in East London: an observational cohort study

BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e042140
Author(s):  
Vanessa J Apea ◽  
Yize I Wan ◽  
Rageshri Dhairyawan ◽  
Zudin A Puthucheary ◽  
Rupert M Pearse ◽  
...  
Keyword(s):  
Premature Death ◽  
Hospital Length ◽  
Hospital Length Of Stay ◽  
Organ Support ◽  
Invasive Ventilation ◽  
Black Patients ◽  
Hospitalised Patients ◽  
Observational Cohort ◽  
The Impact ◽  
To Receive

ObjectiveTo describe outcomes within different ethnic groups of a cohort of hospitalised patients with confirmed COVID-19 infection. To quantify and describe the impact of a number of prognostic factors, including frailty and inflammatory markers.SettingFive acute National Health Service Hospitals in east London.DesignProspectively defined observational study using registry data.Participants1737 patients aged 16 years or over admitted to hospital with confirmed COVID-19 infection between 1 January and 13 May 2020.Main outcome measuresThe primary outcome was 30-day mortality from time of first hospital admission with COVID-19 diagnosis during or prior to admission. Secondary outcomes were 90-day mortality, intensive care unit (ICU) admission, ICU and hospital length of stay and type and duration of organ support. Multivariable survival analyses were adjusted for potential confounders.Results1737 were included in our analysis of whom 511 had died by day 30 (29%). 538 (31%) were from Asian, 340 (20%) black and 707 (40%) white backgrounds. Compared with white patients, those from minority ethnic backgrounds were younger, with differing comorbidity profiles and less frailty. Asian and black patients were more likely to be admitted to ICU and to receive invasive ventilation (OR 1.54, (95% CI 1.06 to 2.23); p=0.023 and OR 1.80 (95% CI 1.20 to 2.71); p=0.005, respectively). After adjustment for age and sex, patients from Asian (HR 1.49 (95% CI 1.19 to 1.86); p<0.001) and black (HR 1.30 (95% CI 1.02 to 1.65); p=0.036) backgrounds were more likely to die. These findings persisted across a range of risk factor-adjusted analyses accounting for major comorbidities, obesity, smoking, frailty and ABO blood group.ConclusionsPatients from Asian and black backgrounds had higher mortality from COVID-19 infection despite controlling for all previously identified confounders and frailty. Higher rates of invasive ventilation indicate greater acute disease severity. Our analyses suggest that patients of Asian and black backgrounds suffered disproportionate rates of premature death from COVID-19.

Can prism adaptation effects generalize to wheelchair maneuvering?

2021 ◽  
pp. 1-10
Author(s):  
Lindsay E. Wyatt ◽  
Anne Sophie Champod ◽  
Gabrielle M. Haidar ◽  
Gail A. Eskes
Keyword(s):  
Standard Treatment ◽  
Clinical Care ◽  
Prism Adaptation ◽  
Spatial Neglect ◽  
Hand Position ◽  
Everyday Activity ◽  
After Effects ◽  
Everyday Activities ◽  
Promising Tool ◽  
The Impact

BACKGROUND: While prism adaptation (PA) has been recognized as a promising tool for treating spatial neglect, implementation as a standard treatment in clinical care has been lagging. Limited evidence for the generalization of after-effects to everyday activities has been a barrier towards implementation. OBJECTIVES: This study examined whether a home-friendly standardized PA protocol (Peg-the-Mole, PTM) induces after-effects that can transfer to wheelchair maneuvering. We also examined the impact of using constant (1 starting hand position) or variable (3 starting hand positions) training conditions on the transfer of after-effects to wheelchair maneuvering. METHODS: Sixty participants were randomly assigned to one of four PTM conditions: 1) prisms/constant training; 2) prisms/variable training; 3) sham goggles/constant training; 4) sham goggles/variable training. RESULTS: The use of PTM with rightward shifting prisms induced after-effects on proprioceptive and visual pointing outcome tasks. Groups using PTM with prism goggles showed a leftward shift in their position within a wheelchair course and a reduction in the number of right-sided collisions. The training condition did not have an impact on the transfer of after-effects to wheelchair driving. CONCLUSION: PTM is a clinically appealing PA protocol that induces after-effects that can transfer to an everyday activity relevant to patients with neglect.

scholarly journals OP0151-PARE WORK IMPACTS EXPERIENCED BY YOUNGER PEOPLE WITH ARTHRITIS: A SYSTEMATIC REVIEW

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 95.1-96
Author(s):  
D. Berkovic ◽  
C. Parker ◽  
D. Ayton ◽  
A. M. Briggs ◽  
I. Ackerman
Keyword(s):  
Quality Assessment ◽  
Clinical Care ◽  
Work Participation ◽  
Work Outcomes ◽  
Healthy Population ◽  
Younger Adults ◽  
Horizon 2020 ◽  
Workplace Support ◽  
Workplace Challenges ◽  
The Impact

Background:On a global scale, it is estimated that adults in their peak income-earning years are disproportionately impacted by arthritis (1). Younger adults with arthritis are less likely to be employed and are more likely to face productivity challenges at work when compared to healthy similar-aged peers (2). The work-related impacts of arthritis on younger adults remain largely unexplored and are rarely considered in routine clinical care for arthritis.Objectives:To systematically identify, appraise and synthesise the available evidence on work impacts experienced by individuals aged 16-50 years with arthritis.Methods:Eligible studies from 2000 - 2020 were identified in OVID Medline, PsycINFO, Embase, and CINAHL databases using a comprehensive search strategy. Quantitative and qualitative studies containing self-reported data on the work impacts of arthritis on younger people were included. Quality assessment was undertaken using validated quality appraisal tools (3).Results:From a yield of 300 studies, 35 were included in the review. After quality assessment and exclusion of the lowest-ranked studies, 28 studies (17 quantitative, 11 qualitative) were analysed. Work outcomes data were organised into five themes (1-3 for quantitative outcomes, 4-5 for qualitative outcomes): (1) the impacts of arthritis on work productivity; (2) the impacts of arthritis on work participation; (3) other arthritis attributable workplace challenges; (4) barriers to work participation associated with arthritis, and (5) enablers to work participation associated with arthritis. For quantitative themes, arthritis was strongly associated with other workplace challenges: scores on the Workplace Activity Limitations Scale ranged from 5.9 (moderate workplace difficulty) to 9.8 (considerable workplace difficulty); and work disability relative to the healthy population (prevalence ranging from 6% - 80%). For qualitative themes, barriers to work participation included lack of workplace support; enablers included workplace support and intrinsic motivation to work.Conclusion:Arthritis is associated with poorer work outcomes for younger people relative to healthy peers. The available evidence was heterogeneous across studies. Additional research focusing solely on the unique workplace needs of younger population groups is required. This would inform the development of tailored intervention or workplace support strategies to maximise productive working years.References:[1]European League Against Rheumatism. Horizon 2020 Framework Programme: EULAR’s positions and recommendations. EULAR 2011.[2]Jetha A. (2015). The impact of arthritis on the early employment experiences of young adults: A literature review. Disabil Health J. 8(3) 317-324.[3]Joanna Briggs Institute. Critical Appraisal Tools. The University of Adelaide 2019.Disclosure of Interests:None declared

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 Eye Health, COVID-19, and the Occupational Health Professional: Round Table

2021 ◽  
Vol 69 (8) ◽  
pp. 352-358
Author(s):  
Susan Gallagher ◽  
Jay Clasing ◽  
Edward Hall ◽  
Stephanie Hammond ◽  
Gayle Howard ◽  
...  
Keyword(s):  
Occupational Health ◽  
Health Professional ◽  
Screen Time ◽  
Occupational Injury ◽  
Clinical Care ◽  
Round Table ◽  
Round Table Discussion ◽  
Eye Health ◽  
The Impact ◽  
Health Risk Management

Background: Eye health has garnered increased attention since the COVID-19 pandemic. This Round Table explored the impact mask wearing, delays in eye examinations, and increased screen time have on vision and ultimately the worker. Methods: Leading experts in the areas of occupational health, risk management, eye health, and communication were identified and invited to participate in a Round Table discussion. Questions posed to experts were based on literature that addressed eye health, such as mask wearing, communication and managing expectations when accessing professional eye health appointments, and increased screen time. Findings: Experts agreed that eye health considerations must be in place. These considerations should address not only clinical care of the patient but ways to protect workers from occupational injury associated with the eye. Conclusion/Application to practice: The occupational health professional is a key resource for assessment and training that pertains to eye health.

scholarly journals 1043. The impact of integrase strand transfer inhibitors (InSTIs) on weight gain among adults with HIV in clinical care

2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S551-S551
Author(s):  
Sneha Thatipelli ◽  
Chad Achenbach ◽  
Shannon Galvin
Keyword(s):  
Weight Gain ◽  
Weight Change ◽  
Metabolic Diseases ◽  
Clinical Care ◽  
First Year ◽  
Strand Transfer ◽  
Art Initiation ◽  
Integrase Strand Transfer Inhibitors ◽  
Clinically Significant ◽  
The Impact

Abstract Background Integrase strand transfer inhibitors (InSTIs) as ART for HIV has been associated with clinically significant weight gain, in addition to the “return to health phenomenon”. Methods We conducted a cohort study on adults over 18 with HIV, who had baseline weights and an additional weight at least 6 months later. Individuals with malignancies, thyroid disorders, and disseminated tuberculosis or mycobacterium avium complex were excluded. To understand the impact of InSTIs on chronic vs. recently infected persons, we divided the cohort into four groups: (1) well-controlled on non-InSTI ART [WN] (2) well-controlled on InSTI ART [WI] (3) uncontrolled on non-InSTI ART [UN], and (4) uncontrolled on InSTI ART [UI]. Well-controlled persons (viral load &lt; 2000) were proxies for chronic infection on long-term ART and uncontrolled for recently infected and initiated on ART. New diagnoses of diabetes, hyperlipidemia, and hypertension were determined by ICD10 codes. Participants with a weight change more than 10 kg in 6 months were excluded. Results 612 of the initial 910 participants in the cohort met the inclusion criteria. Comparing those who remained on the designated regimen throughout the study led to 86 WN, 153 WI, 166 UN, and 145 UI. Mean weight change at 6 months for WN was +0.22 kg (95% CI [-0.86, 1.3]), at 1 year was -0.86 kg (95% CI [-2.94, 1.22]), and at 2 years was +0.026 kg (95% CI [-2.347, 2.399]). For WI, mean weight change at 6 months was +0.21 kg (95% CI [-0.79, 1.21]), at 1 year was -0.50 kg (95% CI [-2.02, 1.04]), and at 2 years was +0.43 kg (95% CI [-1.35, 2.21]). UN gained weight until the first year (+1.74 kg at 6 mo (95% CI [0.24, 3.24]) and +3.84 kg at 1 year (95% CI [1.57, 6.11])), but plateaued at 2 years (+2.42 kg (95% CI [-0.44, 5.28])). At 6 months mean weight gain for UI was +0.78 kg (95% CI [-0.15, 1.71]), at 1 year was +2.33 kg (95% CI [1.02, 3.64]), and at 2 years was +3.04 kg (95% CI [1.2, 4.85]). WI had a higher incidence of diabetes (37% vs. 32%, p=0.40), hyperlipidemia (32% vs. 29%, p=0.66), and hypertension (34% vs. 26%, p=0.19) compared to WN. Conclusion InSTIs may confer a larger and more sustained weight gain among individuals in the first two years after ART initiation. Well controlled individuals did not have statistically significant weight change, but those on Insti-based ART had more metabolic diseases. Disclosures All Authors: No reported disclosures

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