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Objective To explore the sociodemographic and psychological factors influencing the continuity of treatment of patients with chronic kidney disease under the regular epidemic prevention and control of coronavirus disease 2019 (COVID-19). Methods A total of 277 patients with chronic kidney disease who were admitted to Department of Nephrology, The First Affiliated Hospital of Naval Medical University (Second Military Medical University) from Apr. 2020 to Mar. 2021 were enrolled and divided into 3 groups: non-dialysis group (n=102), hemodialysis (HD) group (n=108), and peritoneal dialysis (PD) group (n=67). All patients were investigated by online and offline questionnaires, including self-designed basic situation questionnaire, self-rating anxiety scale (SAS), and self-rating depression scale (SDS). The general sociodemographic data, anxiety and depression of the 3 groups were compared, and the influence of sociodemographic and psychological factors on the interruption or delay of treatment was analyzed by binary logistic regression model. Results There were significant differences in age distribution, marital status, occupation, medical insurance type, caregiver type, whether there was an urgent need for hospitalization and whether treatment was delayed or interrupted among the 3 groups (all P0.05). The average SAS score of 65 PD patients was 38.15+/-15.83, including 53 (81.5%) patients without anxiety, 7 (10.8%) patients with mild anxiety, and 5 (7.7%) patients with moderate to severe anxiety. The average SAS score of 104 patients in the HD group was 36.86+/-14.03, including 81 (77.9%) patients without anxiety, 18 (17.3%) patients with mild anxiety, and 5 (4.8%) patients with moderate to severe anxiety. There were no significant differences in the mean score of SAS or anxiety severity grading between the 2 groups (both P0.05). The mean SDS scores of 65 PD patients were 53.42+/-13.30, including 22 (33.8%) patients without depression, 21 (32.3%) patients with mild depression, and 22 (33.8%) patients with moderate to severe depression. The mean SDS scores of 104 patients in the HD group were 50.79+/-10.76, including 36 (34.6%) patients without depression, 56 (53.8%) patients with mild depression, and 12 (11.6%) patients with moderate to severe depression. There were no significant differences in mean SDS scores or depression severity grading between the 2 groups (both P0.05). The results of intra-group comparison showed that the incidence and severity of depression were higher than those of anxiety in both groups. Multivariate binary logistic regression analysis showed that high school education level (odds ratio OR=5.618, 95% confidence interval CI) 2.136-14.776, P0.01), and unmarried (OR=6.916, 95% CI 1.441-33.185, P=0.016), divorced (OR= 5.588, 95% CI 1.442-21.664, P=0.013), urgent need for hospitalization (OR=8.655, 95% CI 3.847-19.476, P0.01) could positively promote the continuity of treatment in maintenance dialysis patients under the regular epidemic prevention and control of COVID-19. In the non-dialysis group, no sociodemographic and psychological factors were found to be associated with the interruption or delay of treatment (P0.05). Conclusion Education, marital status, and urgent need for hospitalization are correlated with the continuity of treatment in patients with chronic kidney disease on maintenance dialysis.Copyright © 2022, Second Military Medical University Press. All rights reserved.
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OBJECTIVES: On March 11, 2020, the WHO classified COVID-19 as a global pandemic. Measures to quell the pandemic included limiting non-essential activities including clinic visits and procedures. It is unclear if individuals with OI had disruptions in their access to healthcare or medications, and if such disruptions affected patients' symptoms. METHOD(S): A REDCap survey was distributed through the OI Foundation on August 31. Surveys completed through September 11 by individuals with OI or their caregiver are included in this analysis. Participants were asked to compare their symptoms and access to healthcare during the first 4 months of the pandemic to the 4 months before the pandemic. RESULT(S): 85 surveys were completed, and 6 were partially completed. The median age of participants was 40 years;35% were children. 32% of participants self-identified as having severe OI. Although most reported no changes in bone pain or fractures, 46% reported they were less likely to seek emergency medical care to treat a fracture, while 33% reported they were more likely to treat fractures at home (Fig 1A). There were delays in accessing all services, with greatest delays accessing dentistry (74%) and aquatic therapy (84%) (Fig 1B). 36% of participants receiving bisphosphonate infusions had delayed infusions because of the pandemic (Fig 1C). Of note, 50% of planned surgeries were delayed. CONCLUSION(S): Although many individuals with OI and their caregivers reported delays in accessing bone-related services/clinics during this 4-month period, there was not a concomitant increase in reported symptoms. This may have related to shelter-in-place restrictions and decreased activity. Limitations of this study include small sample size and potential selection bias because responses were obtained only from OIF members. To address these limitations, we are distributing the survey through healthcare providers of individuals with OI across major regions of the US from a variety of practice types including endocrine, orthopedics and multidisciplinary clinics. Furthermore, as the COVID-19 pandemic continues, we hope that this survey will provide information to address what aspects of healthcare may be in greatest need, as well as the modality through which services may be met. (Figure Presented).
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Objectives: Evidence demonstrates that when hospitals focus on the discharge process patient safety improves and overall costs decline. Hospital discharge requires care coordination of multiple disciplines, often leading to fragmented care, and adverse outcomes after discharge include emergency department visits and hospital readmissions. The Re-Engineered Discharge (RED) process was developed as an evidence-based strategy to improve the hospital discharge. We evaluated perspectives and priorities of physicians, health care workers, and patients involved in the vascular discharge process using RED as a framework. Method(s): A single-center qualitative analysis using a semi-structured focus groups and an interview guide based on the RED process. Focus groups were Zoom platform recorded, transcribed into text files, independently coded, and analyzed with Dedoose qualitative software using a directed content analysis approach. Thematic concepts were created, and comparisons between groups were analyzed by coding frequency. Researchers independently thematically coded each transcript;prior to analysis, all redundancy of codes was resolved;and all team members agreed on text categorization and coding frequency. Result(s): Eight focus groups with 38 participants were performed. Participants included: physicians (n = 13), nursing and ancillary staff (n = 19), and patients/caregivers (n = 6). Transcript analyses revealed facilitators and barriers to discharge. Overarching themes identified from the qualitative analysis frequencies are displayed by stakeholder role (Fig 1). Themes identified with the greatest coding frequencies included helpfulness of discharge instructions, patient health literacy, patient medical complexity, poor interdisciplinary team communication, time constraints during discharge, technology literacy of patients, barriers to obtaining medications for patients, barriers to organizing outpatient services for health care workers, barriers for patients to obtain help after discharge, and the impact of COVID-19. Conclusion(s): These findings identify the need to strengthen efforts to overcome stakeholder barriers to improve patient safety at the interface of the hospital to create a well-organized discharge. Physicians were most concerned with low patient health literacy, patient understanding of discharge instructions, organizing outpatient services, and overall patient medical complexity hindering a smooth discharge. Health care staff identified time constraints, obtaining medications and, and inter-team communication as their greatest obstacles to an organized discharge. Patients found the complexity and amount of discharge instructions, the impact of COVID-19 on support systems, and technology utilization after discharge most challenging. Modifications to address individual stakeholder barriers within the discharge process are needed to develop a national standardized discharge specific for vascular surgery patients to improve patient safety and satisfaction. [Formula presented]Copyright © 2023
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BACKGROUND: The lockdown would become the primary strategy for facing covid-19 as it quickly mutates which might cause repeated pandemics;however, it negatively affects individuals' quality of life (QOL). The schizophrenia caregivers experience considerable stress. The research on the impact of the COVID-19 lockdown on QOL of schizophrenia caregivers is essential, especially for those who reside in rural areas. AIM: This study aimed to investigate the impact of lockdown-related COVID-19 on QOL among primary caregivers of schizophrenia patients living in a rural area. METHOD(S): This study recruited 204 primary caregivers (15-79 years). This study used the World Health Organization Quality of Life instrument (WHOQOL-BREF) to asses QOL's primary caregiver. Evaluate the possible change in caregivers' QOL before and during the COVID-19 lockdown using paired t-test for repeated measures. RESULT(S): The mean age of the caregivers was 46.61 years (SD = 12.79), ranging from 15 to 79 years, with a preponderance of male (54.5%), aged 38-47 years old (29.7%), married (81.2%), employed (57.4%), and had senior high school level of education (34.7%). Majority were parents (26.2%) of the ill relative, and took care of the patients more than 5 years (52.5%). There was a statistical difference (p < 0.05) in caregivers' QOL between before and during the COVID-19 lockdown, including in physical health, psychological, social relationships, and environment domain. CONCLUSION(S): Implementing a lockdown policy related to COVID-19 has negatively impacted the caregivers' QOL. The degradation of caregivers' QOL showed from before to during COVID-19 lockdown. Further study needs to explore the QOL of other mental illness caregivers regarding COVID-19 lockdown. This finding becomes a reference for a government to modify some policy-related lockdowns to minimize their negative impact.Copyright © 2023 Utomo Utomo, Eko Mulyadi, Endang Fauziyah.
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Aims: Children and adolescents were affected in various ways by the measures due to COVID-19 pandemic. The aims of this study were to investigate and compare the effects on mental health across age, to identify latent class trajectories of emotional and behavioural problems over 12-months and to examine the association of classes of trajectories with baseline demographic and clinical predictors. Method(s): Children (n = 1854) and adolescents (n = 1243) from the general population were assessed baseline, at 6-, 9-, and 12-month follow-up. They were eligible if they were residents in Austria, Germany, or Switzerland, were parents/caregivers of a child aged between 7 and 10 years or adolescents >=11 years, had sufficient German language skills and provided informed consent. Results and Conclusion(s): Significant age-effects were found regarding type and frequency of problems. While children had the largest increase in aggressive behaviours, adolescents reported the largest increase in emotional problems. Sociodemographic variables, exposure to and appraisal of COVID-19, psychotherapy before COVID-19 and parental mental health significantly predicted change in problemscores (F >= 3.69, p <= .001). Using growth mixture modelling, a oneclass solution was detected for the trajectory of aggressive behaviours and a two- and three-class solution for withdrawn/depression and anxiety/depression. A substantial proportion of children and adolescents experienced age-related mental health problems during the different stages of the COVID-19 pandemic. These results suggest that psychological problems of specific sub-groups should be monitored over the longer-term and interventions to improve communication, emotion regulation, and appraisal style should be offered to risk groups.
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A previous chapter highlighted the biological mechanisms by which female sex contributes to Alzheimer's disease (AD) risk and outcomes. However, discussion of AD in women is incomplete without considering the impact of female gender on AD risk, as gender encompasses psychosocial and cultural differences between women and men that also modulate risk for cognitive decline. The current chapter discusses several main social determinants of health and explains how women, as a historically oppressed population, may be particularly vulnerable to the effect of each on cognition. This chapter also considers the disproportionate female burden of dementia caregiving, how associated stresses augment risk for later cognitive decline among caregivers themselves, and how the COVID-19 pandemic may add to this risk. Understanding the gender-specific factors that affect AD risk and disease progression is essential for developing targeted preventative interventions and treatments. Future research is necessary to better characterize how social determinants of health uniquely impact female cognition compared to males. Moreover, future studies focused on gender identities outside of the male–female binary are critical to developing a holistic understanding of how gender may impact late-life cognition. © 2023 Elsevier Inc. All rights reserved.
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Objectives: Goal Attainment Scaling (GAS) quantifies the effect of interventions on individuals' personal goals. Goals that are meaningful to individual patients are set by GAS interviewers (physicians/academics, experienced in clinical research/trials) in collaboration with patients and/or their caregivers. The SARS-CoV-2 pandemic presented a major challenge to health care worldwide. We investigated how the SARS-CoV-2 pandemic affected the use and implementation of GAS in clinical/research settings. Method(s): Eleven GAS interviewers in Canada, the US, UK and Australia with current/past experience working with patient-caregivers to identify goals and build scales to measure goal attainment as an outcome were interviewed using a semi-structured approach. They described how the pandemic affected GAS use in clinical/research settings. Interviews were recorded and transcribed, then themes were identified and coded in Nvivo 12. Result(s): Most GAS interviews were moved to the virtual environment during the pandemic (9/11). GAS interviewers identified few negative impacts. Some goals required modification (e.g. going to the gym or shops). Pandemic stress impacted both interviewers and interviewees. Even so, most GAS interviewers (8/11) emphasized positive impacts of the pandemic. These were: 1) the virtual environment meant patients were more readily available as they did not need to travel;2) because interviewers did not have to travel, patient recruitment could be expanded into more remote geographical areas;3) researchers could recruit and retain more participants and collect data more quickly;and 4) interviewers commented they became more open to technology because of the pandemic (9/11). Conclusion(s): Despite the challenges of the SARS-CoV-2 pandemic for health care, most GAS interviewers found that the impacts were largely positive for using GAS in clinical/research settings. The ability to deploy GAS through a virtual platform could facilitate the uptake of GAS as a patient-centric outcome measure.Copyright © 2023
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Telemedicine is a modality which utilizes technology to provide and support health care across large distances. It has redefined the practices of medicine in many specialties and continues to be a boon for clinicians on many frontiers. Its role in the branch of anesthesia remains largely unexplored but has shown to be beneficial in all the three phases: pre-operative, intra-operative, and post-operative. Now time has come that anesthesiologists across the globe reassess their strategies and utilize the telemedicine facilities in the field of anesthesia.Copyright © 2021 EDP Sciences. All rights reserved.
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Objectives: To provide an overview of trends in the current evidence landscape of products and services in development that support remote patient monitoring (RPM) and remote therapeutic monitoring (RTM), given the release of new billing codes for RPM and RTM by Centers for Medicare and Medicaid Services (CMS) in 2019. Method(s): A focused literature review was conducted in PubMed. Articles published between January 1, 2013 and January 1, 2023 were eligible for inclusion if reported technologies were classified as RPM (defined as the collection and interpretation of physiologic data digitally stored and/or transmitted by patients and/or caregivers to qualified health care professionals) or RTM (defined as the use of medical devices to monitor a patient's health or response to treatment using non-physiological data), following CMS definitions. RPM and RTM technologies included hardware, software, telehealth, and blockchain applications. Articles were then categorized using a semi-automated software platform (AutoLit, Nested Knowledge, St. Paul, MN) based on disease area, study design, intervention, and outcomes studied. Result(s): Of the 673 records screened, 245 articles were included. Observational studies (19.6%) were the most common study design, followed by systematic or focused literature reviews (11.0%) and narrative reviews (10.6%). The most common disease areas included cardiology (25.7%), coronavirus disease of 2019 (COVID-19;13.9%), and diabetes (9.4%). The most frequent clinical, non-clinical, and patient-reported outcomes were symptom monitoring (20.8%), all cause readmission and hospitalization rates (both 7.3%), and patient experience (7.8%), respectively. Conclusion(s): CMS policy and coding practices for RPM and RTM are evolving, and this trend is likely to continue into the future. This review provides details on the current evidence trends associated with RPM/RTM technologies. Evidence development of RPM and RTM should be assessed as evidence needs for coverage and reimbursement may receive increased payer management.Copyright © 2023
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Background: According to national prevalence data, SCD has an estimated economic burden of $2.98 billion per year in the United States and caring for a child with sickle cell disease (SCD) carries its own financial burden, resulting in higher healthcare costs and unintended days lost from employment. Social experiences are known to impact health outcomes in the general pediatric population. These experiences can be examined through the construct of social determinants of health (SDOH), the "condition in which people are born, grow, work, live and age" that impact their health. Since the WHO has designated COVID-19 a pandemic in January 2020, many families in the US have suffered financially, and during the shutdowns, there was a record number of jobs lost. The objective of this study was to determine the impact of the COVID-19 pandemic on financial and employment status of SCD Families Methods: This study was part of the larger CNH Sickle Cell Disease Social Determinants of Health study that was IRB approved. Caregivers of children with SCD completed a 30-question survey reporting their experiences with SDOH that included Demographics, USDA Food Security Scale, the We Care housing screening tool, and the validated COVID-19 Employment Status/COVID-19 related household finances survey in RedCap during clinic visits and hospitalizations Results: 99 caregivers of SCD patients responded to our survey (82.5% Female, 17.5% Male) (N=97). 93.9% identified as African-American, 3% identified as Hispanic or Latinx, 1% identified as "other". Of respondents, 66% were insured through on Medicaid and 33% had private insurance. Twenty-six percent endorsed food insecurity and 2724% relied on low-cost food. Thirty-one percent lived in an apartment, 67.768% lived in a home, 1% lived in shelter or transitional housing. Sixteen percent lived in subsidized or public housing. Thirty-seven (36.8%) percent reported at least once they were being unable to pay the mortgage or rent on time at least once, 9% (8.5%) reported living with other people because of financial difficulties, 55.2% reported their home not being heated, 7.2% reported being evicted from their home and 3.1% lived in an emergency shelter or transitional housing. 6.1% had an educational level of high school graduation or less, 42.2% were college graduates or completed additional post-graduate education (N=98). Two weeks prior to the pandemic, 61.5% worked full time, 13.5% worked part time, 6.3% were unemployed with only 2.1% working from home of the 96 caregivers who responded to this question. 15.5% (N=12 of 77) reported losing their job or were furloughed during the pandemic;34.4% (N=33 of 96) reporting at least one household member losing a job or a significant amount of income. Twenty-five percent (N=21 of 83) reported it was difficult to get work/school done because of the home environment. 36.4 % (N=35 of 96) reported household income was significantly less since February 2020. 53% (N=52 of 97) worried their household income has been or will be negatively impacted by the COVID-19 pandemic. Additionally, 48.9% (N=47 of 96) worried the value of their assets (housing, savings, other financial assets) has been or will be negatively impacted by COVID-19 and its effects. Since February 2020, 9.8% (N= 9 of 97) received unemployment insurance, 30.9% (N=29 of 94) received SNAP or food stamps, 16.5% (N= 15 of 91) received from the food pantry, 6.6% (N=6 of 90) applied for temp ass.
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Objectives: Several populations are at greater risk of severe COVID-19 due to inadequate responses to COVID-19 vaccines. Many of these individuals, and their caregivers, continue practicing varying degrees of social isolation to avoid SARS-CoV-2 infection. Following the end of lockdowns, the behaviors and impacts of continued isolation on the quality-of-life of high-risk populations remain poorly understood. This study describes the main avoidance and protective behaviors and ongoing impacts experienced by adults and caregivers of adults at high-risk of severe COVID-19. Method(s): Four virtual focus groups (April-July 2022) were conducted with individuals at high-risk of severe COVID-19, or caregivers, recruited via a convenience sample from patient panels. A discussion guide of open-ended questions was prepared based on COVID-19 guidance documents and a literature review. For qualitative analyses, an inductive approach was used for behaviors, deductive for impacts. A pre-defined codebook was updated throughout as needed. Salient concepts were defined as those mentioned by >=30% of participants or in every focus-group session. Result(s): Fourteen participants were interviewed (12 patients, 2 caregivers). Participants highlighted continued behaviors greatly impacting their quality-of-life. Avoidance behaviors (staying home, avoiding bystanders, avoiding shopping facilities and gatherings, using delivery services, family protection [43%-64%]) and protective behaviors (masking [79%], vaccination [57%]) were reported. Negative impacts included family relationship impacts (71%), collapse of social relationships (57%), difficulties accessing healthcare (43%), anxiety, fear, loneliness and depression (36%-50%), and impacts on employment/finances (36%). Positive impacts included the advent of telehealth (57%) and recognizing family importance (36%). Lack of trust in authority (57%) and hoarding of medications (36%) were negative general impacts of the COVID-19 pandemic highlighted. Concepts reported by patients and caregivers were similar. Conclusion(s): Individuals at high-risk of severe COVID-19 and their caregivers maintained avoidance and protective behaviors similar to those reported during lockdowns. This study highlights the continued burden experienced by high-risk populations.Copyright © 2023
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Objective: To examine whether established patient-reported outcome measures are suitable for capturing the impact of ARPKD in children and their families. Method(s): We assessed 44 children with ARPKD (40 families) with respect to patients' health-related quality of life ((hr- QOL) using PedsQLTM ESRD module) and mental health (strength and difficulties questionnaire (SDQ)) as well as family and caregiver burden (Impact on family score (IFS) und Ulm inventory of parental caregiver QOL (ULQIE)) and compared them to published data and 36 healthy control children matched for age and time. Result(s): Patients were aged 9.5 +/- 5.9 years (vs. controls 8.8 +/- 5.0, p = ns) and 21 (48%) were female (vs. 19 controls (53%), p = ns). Mean eGFR was 81 ml/min*1.73m2 (range 4 - 165);7 received dialysis and 11 had functioning kidney transplants (KTX, 2 combined with liver transplants). Eight patients had developmental delay secondary to medical complications, while chronic illness was an exclusion criterion for healthy controls. 61 caregivers of affected children had same gender-distribution (61% vs. 60% mothers) and age (both 42 +/- 7 years) and number of dependent children (1.8 +/- 0.9 vs. 2.0 +/- 0.8) as 57 caregivers of healthy children. The mean proxy reported PedsQL Total score was 77.5 +/- 10.6 (range 59 - 96). It correlated significantly to eGFR (r = 0.5, p < 0.01, (also within the subpopulations pre- and post-KTX)). Parents reported greater mental health problems in affected than in control children with a higher SDQ total score mainly due to higher scores in the hyperactivity and peerinteraction subscales. ULQIE revealed that parents of affected children had significantly lower levels of physical functioning, self-fulfillment and general QOL, but despite higher emotional burden scores they indicated similar satisfaction with family life. Impact on family scores were in a similar range to those of children with moderate to severe disabilities. Conclusion(s): The good spread of PedsQLTM ESRD-scores and their correlation to renal function indicates that it captures significant aspects of ARPKD, however, it may need further adjustment to include liver complications. All four chosen instruments revealed significant impact of ARPKD on hrQOL and mental health of affected children as well as family life and parental wellbeing in comparison to healthy controls. More problems with peer-interactions may also be due to more stringent shielding of chronically ill children from social contacts during the COVID pandemic compared to healthy children.
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Aims: Onco-hematologic diseases (lymphomas, myeloma, leukemia) require intensive treatment regimens and represent a burden at the affective and instrumental level for their caregivers. The aim of this study was to investigate the link between caregiving burden and depressive symptoms in caregivers of onco-hematologic patients during the SARS-CoV-2 pandemic. Method(s): A convenience sample of 101 caregivers of onco-hematologic patients were recruited at the Hematology Unit of the Holy Spirit Hospital, Pescara, Italy. Most of the caregivers were female (80%) with an average age of 41 years old (SD = 14.01). Participants were administered the Caregiver Burden Inventory (CBI), the Patient Health Questionnaire-9 (PHQ-9) for depression, and the Fear of Covid-19 Scale (FCV-19S) during two months of the COVID-19-related stay-at-home period (April-May 2021). Result(s): Moderate-to-severe depression (PHQ-9 > 10) were reported by 36% of caregivers. Depressive symptoms were associated with caregivers' time-dependence (r = 0.43), developmental (r = 0.61), physical (r = 0.72), social (r = 0.60), and emotional burden (r = 0.43) (all ps < 0.001). CBI explained 53% of the PHQ-9 variance, particularly the physical (beta = 0.54, p < 0.001) and the social (beta = 0.30, p < 0.01) dimensions of burden. Unexpectedly, COVID-19 was not associated with caregiver burden and depressive symptoms. Conclusion(s): Caregivers of onco-hematologic patients may experience depression due to the burden of caregiving, which is related mostly to the patients' disease rather than extraordinary, even dramatic events such as the pandemic. Psychological interventions are needed for them.Copyright © 2023
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This article expands on a session, titled "Patient Centricity: Design and Conduct of Clinical Trials in Orphan Diseases," that was presented as part of a two-day meeting on Pediatric Drug Development at the International Society for Central Nervous System (CNS) Clinical Trials and Methodology (ISCTM) Autumn Conference in Boston, Massachusetts, in October 2020. Speakers from various areas of pediatric drug development addressed a variety of implications of including children in drug development programs, including implications for rare/orphan diseases. The speakers have written summaries of their talks. The session's lead Chair was Dr. Joan Busner, who wrote introductory and closing comments. Dr. Simon Day, regulatory consultant, outlined some of the past mistakes that have plagued trials that did not consult with patient groups in the early design phase. Dr. Atul Mahableshwarkar provided an industry perspective of a recent trial that benefited from the inclusion of patient input. Drs. Lucas Kempf and Maria Sheean provided regulatory input from the perspectives of the United States (US) Food and Drug Administration (FDA) and European Medicines Agency (EMA), respectively. Dr. Judith Dunn outlined a novel approach for assessing and rank ordering patient and clinician clinical meaningfulness and the disconnect that may occur. Dr. Busner provided closing comments, tied together the presented issues, and provided a synopsis of the lively discussion that followed the session. In addition to the speakers above, the discussion included two representatives from patient advocacy groups, as well as an additional speaker who described the challenges of conducting a pediatric trial in the US and European Union (EU), given the often competing regulatory requirements. This article should serve as an expert-informed reference to those interested and involved in CNS drug development programs that are aimed at children and rare diseases and seek to ensure a patient-centric approach.Copyright © 2023, Matrix Medical Communications. All rights reserved.
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Introduction: Barriers to therapy for patients with lymphoma are an essential topic. The Lymphoma Coalition biennial global patient survey collects data on patient experiences, including challenges or limitations patients face in seeking medical attention or access to treatment. Due to Covid-19, patients with lymphoma have experienced high barriers. This study aims to rank the influence of core demographic variables in their ability to predict barriers to lymphoma treatment in 2020 and 2022. Method(s): The survey was deployed globally to lymphoma patients and caregivers in 2020 & 2022. The outcome variable was the identification of any barrier to receiving lymphoma treatment. Logit regression was used to model the outcome against core demographics. Variable importance was quantified with independent Monte Carlo resampling. Result(s): Barriers were significantly elevated in all regions in 2022 (p<0.0001). Those who are of older age were found to have fewer barriers to treatment: Unit OR = 0.965;95%CI [0.962 - 0.968]. Age was consistently a variable of high importance across most regions in both survey years (Table 1). In 2022, treatment delay due to concerns over COVID-19 was the second-ranked variable of importance in three regions. Conclusion(s): Barriers to treatment for patients with lymphoma increased dramatically across all regions from 2020-2022. Increased barriers to treatment in those of younger age were an unexpected finding. Heterogeneity in the impact of variables that influence access to treatment appears to be enhanced by participants' psychosocial impacts due to the pandemic. Policymakers and providers should actively rectify access disparities in their respective regions.
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INTRODUCTION: Severe acquired brain injury(SABI) often results in the deterioration of physical, cognitive and emotional functions in the patient and a significant caregiver's distress syndrome, which is now amplified by the social isolation, depression and financial difficulties related to the COVID-19 pandemic. The use of web-based online-therapy has been shown to be useful to overcome caregiver's distress syndrome and further stimulate cognitive-motor recovery of SABI-patients. Our study aimed to investigate whether a systematic online Skype-therapy(OLST) may be of support in favoring global cognitive and sensory-motor recovery in SABI-patients and reducing caregiver distress. METHODS: Twenty-five SABI-subjects in inpatient regimen were provided with intensive OLST with the caregiver for 12 weeks in addition to standard neurorehabilitation. Each subject and caregiver was evaluated before and after the treatment by administering an ad hoc battery. Furthermore, 18 of 27 patients were provided with EEG recording in resting state. RESULTS: We found a significant reduction in caregiver's anxiety (p<0.0001) and burden(p<0.0001). Patients showed significant improvement in trunk control (p<0.0001), functional independence (p = 0.005), functional (p = 0.01) and global communication (p = 0.004), cognitive functioning (p = 0.001), and behavioral responsiveness (p = 0.0004). The training yielded a significant connectivity change within the fronto-centro-parietal areas in the delta frequency band (p<0.0001) and the centro-parieto-occipital areas in the alpha range (p = 0.004). DISCUSSION: OLST may be a useful and complementary treatment to optimize global cognitive and functional recovery in SABI-subjects and reduce caregivers' concerns in the Covid-era. OLST can foster cognitive-motor recovery potentially by favoring the plasticity-dependent functional recovery. Therefore, OLST could be proposed as a tool allowing social conversations also in the hospital setting.
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This study a utilized phenomenological hermeneutic design. Fourteen Iranian family caregivers of patients with COVID-19 who were isolated at home were included in the study using purposive sampling. In-depth unstructured interviews were conducted via WhatsApp. Sampling continued until data saturation. Interviews were transcribed and analyzed using Van Manen's approach. Three primary themes and eight subthemes emerged. The primary themes included: "captured in a whirlpool of time", "resilient care' and "feeling helpless". It seems that the families of patients with COVID-19 attempt to resist the pressures of this disease with religious practices and problem solving. However, due to the nature of the disease and its severity, they sometimes feel ashamed or lonely and are afraid of losing their loved ones. It is recommended that psychiatric nurses should develop programs in the form of comprehensive spiritual care packages or psychological support and utilize multiple media channels to deliver these.
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Objectives: To explore how the COVID-19 pandemic affects caregiver (CG) burden, the quality of care provided to people with dementia (PwD) and their perceived changes between before and during the pandemic. Methods: A cross-sectional study surveyed primary CGs about burden and self-perceived change in multidimensional domains and compared these before and during the pandemic. Results: About 135 primary CGs of PwD were enrolled at Siriraj Hospital's Geriatric Clinic in Thailand and assessed using various online platforms. About 13.8% of CGs had a "mild to moderate" burden. The NPI-Q score and level of functional capacity of the PwD declined during the COVID-19 pandemic (p-value .001 and .001, respectively). The CG-associated factors that related to a higher CG burden were younger age (mean age of 54.2 years old), female (76.3%), and high educational level (80.7%). Conflict between CG and PwD was associated with an increase in CG burden (p-value .004; 95% CI [1.19, 6.12]). Regarding the COVID-19-related factors, there was no association between CG burden and the PwD's characteristics or COVID-19-related concerns. Conclusions: The COVID-19 pandemic was associated with a higher CG burden. Identifying the related factors in an unusual situation may help reduce the CG burden and improve the care of PwD.