scholarly journals Analysis of Free-Text Responses in an International Myeloproliferative Neoplasms Patient Survey to Assess Impact of the COVID-19 Pandemic on Clinical Care

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 11-12
Author(s):  
Blake T. Langlais ◽  
Carolyn Mead-Harvey ◽  
Heidi E. Kosiorek ◽  
Gina L. Mazza ◽  
Ruben Mesa ◽  
...  

Background The COVID-19 pandemic continues to challenge effective treatment delivery to hematologically-compromised patients, including those with myeloproliferative neoplasms (MPNs). MPNs are characterized by clonal proliferation of hematopoietic cell lines in bone marrow. As such, increasing reports of COVID-19 related thrombotic events highlight how MPN patients are at an increased risk in navigating potential complications during this pandemic. Mitigation strategies to lesson MPN patient exposure to COVID-19 are vital. Though, such efforts come at an inherent cost to effective healthcare delivery. Restriction of regular in-clinic treatments and reported shortages of MPN pharmacotherapies present these patients with diminishing continued care. To understand how MPN patient care has been impacted by COVID-19, an internet-based questionnaire was deployed surveying a variety of disease and pandemic related items (reported elsewhere; Palmer J et al, ASH 2020 submitted). A single free-text response item instructed respondents to: "Please tell us anything else (bad or good) about how the COVID-19 outbreak has impacted your MPN care." This qualitative analysis evaluated first-hand comments directly from patients in order to form a richer understanding of how those with MPNs have been managing disease-related care amidst this pandemic. Methods This COVID-19 survey was hosted via Mayo Clinic's secured REDCap system for online surveys and posted on MPN organizational partner websites. Surveys were completely anonymous. The free-text responses describing impacts to MPN care were each independently reviewed by 2 individuals for overall sentiment (positive, negative, both, or neutral [no impact]) and categorized for themes. The 2 reviewers were assessed for agreement. Conflicting reviews were evaluated then adjudicated by an algorithm for cases meeting selected conditions or by lead author review for all remaining cases. Descriptive statistics are reported. Results Of the 1217 consenting adult patients participating in the overall COVID-19 study, 824 provided free-text responses. Of these, respondent MPN diagnoses included, essential thrombocythemia (n=324, 39%), polycythemia vera (n=251, 30%), myelofibrosis (n=153, 19%), and other/undisclosed (96, 12%); 69% (n=567) were female; median age was 63 (range 21-93); 38% (n=313) were from the US, 38% (n=313) UK, and 24% (n=198) other/unknown. There was 89% (n=734) sentiment agreement between reviewers. Free-text responses about the impact of COVID-19 on MPN care were 49% (n=400) negative, 21% (n=177) positive, 8% (n=65) both positive and negative, and 22% (n=182) neutral/no impact. Table 1 shows a selection of MPN patient free-text responses reflecting common negative and positive sentiment themes. Negative impact (n=400): The most common negative impact involved delays or cancellations of visits or perceived inaccessibility to regular providers (n=261, 65%). Primarily this sentiment was driven by lack of clinic availability and restrictions at treatment centers or by providers. However, some respondents reported delaying or canceling visits themselves due to fear of COVID-19 exposure. Perceived health consequences from this delay were also expressed. There were 129 (32%) respondents with concern regarding changes or access to medications, including explicit drug supply shortages. Some patients resorted to self-adjusting medications and reusing single-use supplies. General anxiety, stress, and isolation were also reported (n=98, 25%). Positive impact (n=177): Availability of telemedicine comprised the majority of positive impacts of the pandemic (n=95, 54%), with many noting the reduced travel time to visits. Routine local testing coupled with follow-up telemedicine was favorable. Despite general positivity towards telemedicine, some reported preferences for in-person visits; commenting that telemedicine was impersonal, difficult to schedule or receive virtual communication, and expressed concern for lack of spleen examinations during virtual visits. Conclusion Positive and negative aspects were reported including MPN-specific issues. Healthcare systems should use such data to emerge from the COVID-19 pandemic and retain the positive impacts such as telemedicine, while developing education materials and other resources to address the reported negative impacts where possible. Disclosures Mesa: CTI BioPharma: Research Funding; Promedior: Research Funding; Novartis: Consultancy; Sierra Oncology: Consultancy; Samus Therapeutics: Research Funding; Genentech: Research Funding; AbbVie: Research Funding; Incyte: Research Funding; LaJolla Pharmaceutical Company: Consultancy; Bristol Myers Squibb: Research Funding.

Blood ◽  
2014 ◽  
Vol 124 (21) ◽  
pp. 47-47 ◽  
Author(s):  
Muthalagu Ramanathan ◽  
Pierre Teira ◽  
Minoo Battiwalla ◽  
A. John Barrett ◽  
Caroline A Lindemans ◽  
...  

Abstract Introduction: Since the early days of allogeneic hematopoietic cell transplantation (HCT), positive serology for cytomegalovirus (CMV) in either the recipient or the donor, and CMV reactivation have been associated with poorer outcomes. In the 90’s, development of effective monitoring and potent antiviral drugs minimized and occasionally abrogated this negative impact. Recently, some studies have reported an unexpected association between early CMV reactivation and decreased incidence of relapse in AML. The Center for International Blood and Marrow Research (CIBMTR) sought to conduct a retrospective large scale study to reassess the impact of CMV serology and CMV reactivation in the current era. Methods: The analysis includes comprehensive data of 11,153 patients undergoing first allogeneic HCT between 2003 and 2010 reported to the CIBMTR. Separate analyses were conducted for each of the 6 patient categories: AML transplanted with bone marrow (BM) or peripheral blood stem cell (PBSC) (n=5310), AML transplanted with cord blood (CB) (n= 925), ALL with BM/PBSC (n=1883), ALL with CB (n= 759), CML with BM/PBSC (n=1079) and MDS with BM/PBSC (n=1197). CMV serology from the donor (D) or recipient (R), and reactivation of CMV (as a time-dependent co-variate) within the first year after HCT were analyzed as risk factors for outcomes. The median duration of follow up was 56 months (1 – 127 months). Results: The median time to CMV reactivation was 40 days (1 – 362 days) after HCT and 98% of reactivations occurred before day 100 (D+/R+ 32%, D+/R- 11%, D-/R+ 34%, D-/R- 4%). In multivariable analysis, throughout the 6 groups, a positive serology (D+/R+, D+/R-, D-/R+) vs a negative serology (D-/R-),had no effect on the risk of GVHD (acute or chronic) or the risk of relapse, except for an increased risk of chronic GVHD for BM/PBSC recipients with ALL. CMV positive serology was associated with a higher transplant related mortality (TRM) and a poorer overall survival (OS). For a R+ patient, a D- compared to a D+, had no negative impact except for ALL with BM/PBSC where a D- was associated with a poorer OS. After PBSC/BM transplantation, CMV reactivation was associated with a higher TRM for MDS (RR=1.61, p=0.0002), CML (RR=1.86, p=0.0004), AML (RR=1.68; p<0.0001) and ALL (RR=1.95; p<0.0001), translating into lower OS (range of RR from 1.27 to 1.49; p value from 0.003 to <0.0001). Only among AML patients following CB transplantation, CMV reactivation did not worsen OS. Moreover, CMV reactivation had no effect on the incidence of relapse irrespective of the diagnosis or the source of stem cells. Finally, we conducted a subset analysis focusing on the group of AML, transplanted with PBSC after a myeloablative conditioning regimen and with a GVH prophylaxis relying on Ciclosporine and Methotrexate only. In multivariable analysis, there was no difference in the risk of relapse based on CMV reactivation as a time-dependent co-variate [RR 0.96 (0.65 – 1.4), p=0.8385]. Conclusion: Positive D/R CMV serology still results in increased TRM and decreased OS after HSCT in the current era. Early CMV reactivation did not prevent relapse in patients with AML, MDS, CML or ALL after HCT. Disclosures Boeckh: Chimerix: Consultancy, Research Funding; Viropharma: Research Funding; Genentech/Roche: Consultancy, Research Funding; Astellas: Consultancy, Research Funding; Merck: Consultancy, Research Funding; Gilead Sciences: Consultancy, Research Funding; Clinigen: Consultancy.


Medicina ◽  
2021 ◽  
Vol 57 (8) ◽  
pp. 756
Author(s):  
Maciej Walędziak ◽  
Anna Różańska-Walędziak ◽  
Paweł Bartnik ◽  
Joanna Kacperczyk-Bartnik ◽  
Andrzej Kwiatkowski ◽  
...  

Background: the COVID-19 pandemic and the implemented restrictions have changed the functioning of healthcare systems worldwide. The purpose of the study was to evaluate the impact of the present epidemiological situation on patients’ decisions about undergoing weight loss surgery. Methods: data were collected from 906 bariatric patients by the means of a national online survey, the majority of whom were women (87.9%). The survey started on 9 April 2020 and was open until 28 April 2020. The questionnaire included multiple choice and open questions, divided into three chapters: general information about the patient, life during the COVID-19 pandemic, and bariatric care during the COVID-19 pandemic. Results: despite the pandemic and the associated risk of COVID-19 infection, 443 responders (48.9%) would have decided to undergo bariatric surgery. Awareness of the negative impact of obesity on the course of COVID-19 illness had only marginable impact on patients’ decision-making (76.6% vs. 75.3%; p < 0.80). Contact with COVID-19 prior to the survey had a negative impact on the willingness to undergo bariatric surgery (3.0% vs. 4.4%; p < 0.55). There was a positive correlation between the BMI and preference for bariatric surgery in the time of the pandemic (37.4 ± 9.0 vs. 34.9 ± 8.7; p < 0.001). Conclusions: the level of awareness about the advantages of operative treatment of obesity is high among bariatric patients. The majority of patients awaiting bariatric surgery at the moment of the survey were positive about undergoing bariatric surgery despite the increased risk of a serious course of COVID-19 infection. Therefore, a large proportion of patients was determined to have bariatric treatment even during the pandemic, being aware of the increased risk of worse pace of COVID-19 disease in case of obesity and related diseases.


Circulation ◽  
2008 ◽  
Vol 118 (suppl_18) ◽  
Author(s):  
Jay D Pal ◽  
Charles T Klodell ◽  
Ranjit John ◽  
Francis Pagani ◽  
Joseph G Rogers ◽  
...  

Objective: Our goal was to determine the operative mortality of isolated implantation of the HeartMate II continuous flow LVAD and the impact of additional concurrent cardiac procedures on patient outcomes. Methods: In a multicenter trial, 279 patients at 33 clinical sites underwent implantation of the HeartMate II continuous flow LVAD as a bridge to transplantation from March 2005 to March 2007. HeartMate II implantation (HM II) was the only procedure required in 172 patients while 80 patients required concurrent cardiac procedures in conjunction with LVAD implantation (HM II+CCP). Results: Preoperative characteristics were similar, but central venous pressure (14.5 vs 11.6 mmHg) was greater for patients requiring concurrent cardiac procedures, suggesting worse right heart dysfunction. Mean cardiopulmonary bypass times increased from 97 to 120 minutes when a concurrent cardiac procedure was performed (p<0.001). Length of stay slightly increased from 23 to 26 days (p=0.17). Overall 30- and 180-day mortality was 5.8% and 13.3% for the HM II group, and 11.3% and 20.0% for the HM II+CCP group. Concurrent valvular procedures increased the risk to 8.5% and 19.1%. Patients who underwent an aortic valve replacement with cardioplegic arrest had a 30-day mortality of 25%, higher than for isolated concurrent mitral (0%) or tricuspid repair (3.3%). Other cardiac procedures were associated with a 30-day mortality of 27.8%. Survival at 180 days was 87% for HMII alone and 80% for HMII+CCP. Conclusion: There is a low 5.8% operative mortality for patients requiring uncomplicated HeartMate II implantation, with no apparent increased risk for concurrent PFO closure, mitral or tricuspid repair. However, concurrent aortic valve and other cardiac procedures are associated with a significantly decreased survival. The increased risk of these procedures must be balanced against the negative impact of uncorrected aortic insufficiency during VAD support.


2021 ◽  
Vol 30 (17) ◽  
pp. S24-S30
Author(s):  
Geraldine Walpole ◽  
Mary Kelly ◽  
Joy Lewis ◽  
Avril Gleeson ◽  
Ann-Marie Cullen ◽  
...  

Myeloproliferative neoplasms (MPNs) are associated with a high disease burden, reduced quality of life and shortened survival. The aim of this questionnaire was to gain patients' and caregivers' perspectives on the impact of living with an MPN in the Republic of Ireland. An Irish adaptation of the ‘Global MPN Landmark survey’ was conducted. Fifty-one patients and 44 caregivers completed the questionnaire. Patients reported a wide variety of symptoms at the time of questionnaire completion; fatigue, bone pain and pruritus being most frequently reported. Approximately one-third of respondents from each of the groups (patients and caregivers) reported a negative impact of MPNs on their emotional wellbeing and daily lives. The study findings revealed that, despite treatment, symptom burden remains high, and several unmet needs exist, including educational, emotional and peer group support. Interventions that focus on reducing symptom burden and addressing these unmet needs, may improve the quality of life for patients with MPNs and their caregivers.


Author(s):  
Douglas Myhre ◽  
Jodie Ornstein ◽  
Molly Whalen-Browne ◽  
Rebecca Malhi

Background: The use of rural rotations within urban-based postgraduate programs is the predominant response of medical education to the health needs of underserved rural populations.  The broader impact on rural physicians who teach has not been reported. Methods: This study examined the personal, professional, and financial impact of a rural rotations for urban-based family medicine (UBFM) residents on Canadian rural teaching physicians. A survey was created and reviewed by community and academic rural physicians and a cohort of Canadian rural family physicians teaching UBFM residents was sampled. Survey data and free-text responses were assessed using quantitative and qualitative analyses.   Results: Participants with rural residency backgrounds perceived a negative impact of teaching UBFM (p = 0.02 personal and professional) and those in a primary rural environment (as defined below) perceived impact as positive (p < 0.001). Rural preceptors often held contrasting attitudes towards learners with negative judgements counter-balanced by positive thoughts. Duration in practice and of teaching experience did not have a significant impact on ratings. Conclusion: Being a rural preceptor of UBFM residents is rewarding but also stressful. The preceptor location of training and scope of practice appears to influence the impact of UBFM residents.


Cyber Crime ◽  
2013 ◽  
pp. 870-890
Author(s):  
John Beswetherick

The healthcare industry is moving towards adoption of electronic health records. There are associated privacy and security implications to this move towards electronic collection and storage of sensitive health information. This chapter suggests that the impact on the privacy and security of health information for disabled individuals is greater than that for the general populace. Contributors to this increased risk are related to the increase in dependence on the clinical care system and the related increase in volume of the data that is collected, stored and exchanged as a function of providing care to this population.


PeerJ ◽  
2016 ◽  
Vol 4 ◽  
pp. e1838 ◽  
Author(s):  
Mery Constanza García-Vargas ◽  
Mercedes Rizo-Baeza ◽  
Ernesto Cortés-Castell

Background.Little research exists on the impact of paid work on academic performance of students of health sciences. No research exists on this subject for students in Colombia.Objectives.This paper seeks to analyze the impact of paid work on academic performance among nursing students. Design, settings and participants: cross-sectional research, involving 430 of nursing students from the National University of Colombia (N= 566).Methods.Variables analyzed: sex, age, work activity, attendance, current semester, degree subjects studied and unavailable, lost credits, grades during the second semester of 2013, and delayed semesters. Subgroups analyzed: (i) according to labor activity: do not work, work up to 20 h and work more than 20 h per week; (ii) Grade point average: failing is considered as less than 3.0 and passing 3.0 or above out of 5.0. Percentage of delayed semesters were calculated. Qualitative and quantitative variables were analyzed for groups by work activity. The percentage and probability of students getting a grade point average less than 3.0 and delaying semesters were calculated by multivariate logistic regression.Results. A total of 219 of the students work (50.9%), the main reason is socioeconomic, of which 99 (45.2%) work more than 20 h per week and have an increased risk of failing, which is higher in the first semester. They also get lower grades, lose more credits and take longer to finish the degree. The logistic bivariate regressions of success (grade point average, credits gained, courses gained and not having delayed semesters) reduce with work, above all in those who work more than 20 h per week and increase as the number of semesters completed increases, independent of sex.Conclusion.A high percentage of nursing students work more than 20 h per week. The compatibility of paid work with studies in university nursing students has a negative impact on academic performance, more so when they work more than 20 h per week. This negative impact diminishes as the student completes semesters, irrespective of the sex of the students.


Author(s):  
Valeriya Azorina ◽  
Nicola Morant ◽  
Hedvig Nesse ◽  
Fiona Stevenson ◽  
David Osborn ◽  
...  

People bereaved by suicide have an increased risk of suicide and suicide attempt, yet report receiving less support than people bereaved by other sudden deaths. Reductions in support may contribute to suicide risk, yet their nature is unclear. We explored the impact of suicide bereavement on the interpersonal relationships of young adults in the UK using an online survey to collect qualitative data. We conducted thematic analysis of free-text responses from 499 adults to questions capturing the impact of bereavement on relationships with partners, close friends, close family, extended family, and other contacts. We identified four main themes describing the changes in relationships following the suicide: (1) Social discomfort over the death (stigma and taboo; painfulness for self or others to discuss; socially prescribed grief reactions); (2) social withdrawal (loss of social confidence; withdrawal as a coping mechanism); (3) shared bereavement experience creating closeness and avoidance; (4) attachments influenced by fear of further losses (overprotectiveness towards others; avoiding attachments as protective). These findings contribute to understanding deficits in support and pathways to suicidality after suicide bereavement. Such disrupted attachments add to the burden of grief and could be addressed by public education on how to support those bereaved by suicide.


2020 ◽  
Vol 25 (Supplement_2) ◽  
pp. e11-e11
Author(s):  
Avery Longmore ◽  
Kathleen Hollamby ◽  
Jeanne Zielonka ◽  
Douglas M Campbell

Abstract Background Newborn infants are at increased risk of requiring respiratory support with a mechanical ventilator. Nasal continuous positive airway pressure (nCPAP) is the most commonly used non-invasive respiratory support. Current nCPAP support is not synchronized to an infant’s breathing efforts, and can contribute to patient discomfort, skin breakdown, and interference with mother-infant bonding. An alternative to nCPAP is negative pressure ventilation. Our NeoVest was developed as a wearable vest that utilizes Neurally Adjusted Ventilator Assist (NAVA) technology to synchronize with the infant’s own respiratory drive and control. NeoVest and NAVA have demonstrated efficacy/feasibility in preliminary experiments emulating neonatal respiratory distress in animal models. Before implementation of this new technology in NICUs, it is important to assess the perspectives of NICU multi-disciplinary staff and parents to optimize design and understand its impact. Objectives The objective was to assess both clinicians’ and NICU parents’ perceptions of the NeoVest as compared with traditional nCPAP devices. Design/Methods Nurses, respiratory therapists and NICU parents at St. Michael’s Hospital in Toronto, Canada were invited to participate in the study. Research Ethics Board approval was obtained for this study. Parents were approached if their baby has previously been on CPAP. After consent, participants attended simulations that demonstrated the utility of the NeoVest. After the simulation, participants completed a survey that assessed their satisfaction and stress level regarding use of the NeoVest in a clinical setting. Numeric Likert scale responses and free text comments were collected from participants and analyzed. Free text comments were assessed using the principles of thematic analysis. Results Thirty clinicians (16 nurses, and 14 RTs), and 4 parents answered the survey. Almost all respondents were excited by the new technology and believed the use of simulation in the NICU was beneficial. Respondents reported that the NeoVest would not add stress to their roles in the NICU, and the majority of clinicians also believed that the NeoVest will improve care of the infant patient. Parents and clinicians both suggested that nCPAP can cause stress, and that the NeoVest would be preferred. One of the major themes regarding how the NeoVest may improve care from the perspective of both parents and clinicians was improved parent-child bonding through improved eye contact. Clinicians also believed it would reduce irritation, maintain skin integrity and have less complications as compared to nCPAP. The major themes with respect to clinician concerns about the NeoVest included: examining the neonate, umbilical line access, and the learning curve for new technology. The major themes with respect to parental concerns included: interference with skin to skin and holding their child. Conclusion Survey responses were overall favourable for introduction of new NICU technology, in this case a novel breathing device: the NeoVest. Although small, this cohort provided invaluable insight regarding the NeoVest’s impact on future patient populations. This highlights the importance of patient feedback in innovation. Next steps include a pilot study assessing the feasibility and efficacy of the NeoVest in the clinical setting, with re-administration of the questionnaires to compare reality and simulation.


2020 ◽  
Vol 21 (24) ◽  
pp. 9723
Author(s):  
Aleksandra Ryk ◽  
Aleksandra Łosiewicz ◽  
Arkadiusz Michalak ◽  
Wojciech Fendler

People with type 1 diabetes have an increased risk of developing microvascular complications, which have a negative impact on the quality of life and reduce life expectancy. Numerous studies in animals with experimental diabetes show that c-peptide supplementation exerts beneficial effects on diabetes-induced damage in peripheral nerves and kidneys. There is substantial evidence that c-peptide counteracts the detrimental changes caused by hyperglycemia at the cellular level, such as decreased activation of endothelial nitric oxide synthase and sodium potassium ATPase, and increase in formation of pro-inflammatory molecules mediated by nuclear factor kappa-light-chain-enhancer of activated B cells: cytokines, chemokines, cell adhesion molecules, vascular endothelial growth factor, and transforming growth factor beta. However, despite positive results from cell and animal studies, no successful c-peptide replacement therapies have been developed so far. Therefore, it is important to improve our understanding of the impact of c-peptide on the pathophysiology of microvascular complications to develop novel c-peptide-based treatments. This article aims to review current knowledge on the impact of c-peptide on diabetic neuro- and nephropathy and to evaluate its potential therapeutic role.


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