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1.
Am J Hosp Palliat Care ; : 10499091221119462, 2022 Aug 09.
Article | MEDLINE | ID: covidwho-20245699

ABSTRACT

Aim: To understand Parkinson's Disease (PD) care partners' a) specific challenges that led to worsening strain and b) their suggestions for supports to help them during the ongoing pandemic. Method: Using a qualitative descriptive design, semi-structured interviews with family care partners (n = 19) were completed. Participants were recruited from 10 sites across the United States that varied in size, demographics of patient population served, and geographic location (urban, suburban, rural). Interviews were audio-recorded, de-identified, transcribed verbatim, and coded in a phased manner. The research team analyzed the data and identified themes. Results: During the pandemic, the already difficult task of caregiving was made worse by having to choose between poor options. Five themes exemplified PD care partner experiences: (1) Managing risks and benefits of medical care in settings outside the home vs meeting these needs at home; (2) Struggling to maintain employment benefits with the costs of care and risks of bringing in outside caregivers; (3) Struggling to balance caregiving and self-care; (4) Struggling to be supportive and taking on new caregiving roles in the face of less support services; and (5) Wanting social connections and feeling pressured to maintain isolation. Care partners wanted timely access to, and guidance from healthcare teams to help them. Conclusions: Care partner burden was worsened by lack of guidance when confronted by choices that could lead to negative outcomes. Movement disorder and palliative care providers may be able to alleviate some care partner burden through building systems for timely access and guidance.

2.
Cytotherapy ; 25(6 Supplement):S245-S246, 2023.
Article in English | EMBASE | ID: covidwho-20245241

ABSTRACT

Background & Aim: With larger accessibility and increased number of patients being treated with CART cell therapy, real-world toxicity continues to remain a significant challenge to its widespread adoption. We have previously shown that allogeneic umbilical cord blood derived (UCB) regulatory T cells (Tregs) can resolve uncontrolled inflammation and can treat acute and immune mediated lung injury in a xenogenic model as well as in patients suffering from COVID-19 acute respiratory distress syndrome. The unique properties of UCB Tregs including: i) lack of plasticity when exposed to inflammatory micro-environments;ii) no requirement for HLA matching;iii) long shelf life of cryopreserved Tregs;and iv) immediate product availability for on demand treatment, makes them an attractive source for treating acute inflammatory syndromes. Therefore, we hypothesized that add-on therapy with UCB derived Tregs may resolve uncontrolled inflammation responsible for CART cell therapy associated toxicity. Methods, Results & Conclusion(s): UCB Tregs were added in 1:1 ratio to CART cells, where no interference in their ability to kill CD19+ Raji cells, was detected at different ratios : 8:1 (80.4% vs. 81.5%);4:1 (62.0% vs. 66.2%);2:1 (50.1% vs. 54.7%);1:1 (35.4% vs. 44.1%) (Fig 1A). In a xenogenic B cell lymphoma model, multiple injections of Tregs were administered after CART injection (Fig 1B), which did not impact distribution of CD8+ T effector cells (Fig 1C) or CART cells cells (Fig 1D) in different organs. No decline in the CAR T levels was observed in the Tregs recipients (Fig 1E). Specifically, no difference in tumor burden was detected between the two arms (Fig 2A). No tumor was detected in CART+Tregs in liver (Fig 2B) or bone marrow (Fig 2C). A corresponding decrease in multiple inflammatory cytokines in peripheral blood was observed in CART+Tregs when compared to CART alone (Fig 2D). Here we show "proof of concept" for add-on therapy with Tregs to mitigate hyper-inflammatory state induced by CART cells without interference in their on-target anti-tumor activity. The timing of Tregs administration after CART cells have had sufficient time for forming synapse with tumor cells allows for preservation of their anti-tumor cytotoxicity, such that the infused Tregs home to the areas of tissue damage to bind to the resident antigen presenting cells which in turn collaborate with Tregs to resolve inflammation. Such differential distribution of cells allow for a Treg "cooling blanket" and lays ground for clinical study. [Figure presented]Copyright © 2023 International Society for Cell & Gene Therapy

3.
Environmental Justice ; 2023.
Article in English | Web of Science | ID: covidwho-20244521

ABSTRACT

The COVID-19 pandemic has disproportionately affected working class and Black, Indigenous, and People of Color (BIPOC) communities, who have been more likely to contract and die from the virus. These inequalities in part stem from higher rates of comorbidities such as asthma, which can be connected to local built environments. One area where these inequalities are starkest is in energy generation and distribution, where marginalized communities are both more likely to be exposed to hazards from energy production, whereas at the same time more likely to struggle to afford that energy, leading to difficult trade-offs with other necessities. In turn, many of these inequalities can be tied to spatial patterns of residential segregation, such as redlining, which cut off BIPOC communities in from the prevailing wealth generating mechanisms of the past century, leading to the patterns of divestment and hazard exposure seen today. In this article, we explore the connections between public health, energy production and consumption, and redlining, using Milwaukee, WI as a case study. Using data from March to June 2020, we perform quartile regressions to assess the relationship between positive COVID cases, local demographics, and the local energy environment. We find that low-income and BIPOC communities were more likely to contract COVID, while also facing higher energy burdens and exposure to respiratory hazards, as well as a statistically significant relationship between COVID rates and redlining policy. We argue these results call further research into the connections between energy insecurity and other forms of injustice that manifest within racial capitalism.

4.
Value in Health ; 26(6 Supplement):S247, 2023.
Article in English | EMBASE | ID: covidwho-20244376

ABSTRACT

Objectives: Social determinants of health (SDoH) including income, education, employment, and housing are known to affect health outcomes;while use in real-world database studies are limited. This study assessed socioeconomic differences in burden of disease and utilization of COVID-19 specific medications in a large cohort of patients in the US. Method(s): A total of 17,682,111 patients having a COVID-19 diagnosis between 4/1/2020 and 4/30/2022 were identified in the IQVIA longitudinal medical and pharmacy claims databases of >277 million patients. For SDoH, a 3-digit zip code median Area Deprivation Index (ADI) (v2.0 University of Wisconsin School of Medicine and Public Health 2015) was calculated for each patient, maintaining patient privacy. The ADI is a validated tool ranking neighborhoods by socioeconomic disadvantage. Medical and pharmacy utilization was assessed and stratified by ADI pentiles, where 0-20 was the least disadvantaged, and 81-100 was the most disadvantaged. Result(s): The proportion of patients having a claim with COVID-19 diagnosis was higher in the most disadvantaged (7.75%) compared to the least disadvantaged group (5.94%) (US overall: 6.37%). Medical claims prior to COVID-19 diagnosis were highest in the least disadvantaged, while prior pharmacy utilization was highest in the most-disadvantaged group. There was sparse use of COVID-19 medications overall;the least disadvantaged patients had the lowest use of COVID-19 specific medications. Casirivimab/imdevimab use was highest in the 61-80 (2.01%) and 81-100 (1.79%) ADI groups, and remdesivir use was highest in the moderately disadvantaged (ADI 41-60 and 61-80) groups (both 2.33%). Utilization of hydroxychloroquine (unapproved for COVID-19) increased from 0.91% in the least to 2.13% in the most disadvantaged groups. Conclusion(s): This study shows unequal burden of COVID-19 prevalence by SDoH, with the most disadvantaged having a higher disease burden and utilization of certain approved and unapproved COVID-19 medications, highlighting the need for further study of the reasons for these disparities.Copyright © 2023

5.
COVID-19 in Alzheimer's Disease and Dementia ; : 259-271, 2023.
Article in English | Scopus | ID: covidwho-20242546

ABSTRACT

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.

6.
Rezaei Aliabadi, H.; Sepanlou, S. G.; Aliabadi, H. R.; Abbasi-Kangevari, M.; Abbasi-Kangevari, Z.; Abidi, H.; Abolhassani, H.; Abu-Gharbieh, E.; Abu-Rmeileh, N. M. E.; Ahmadi, A.; Ahmed, J. Q.; Rashid, T. A.; Naji Alhalaiqa, F. A.; Alshehri, M. M.; Alvand, S.; Amini, S.; Arulappan, J.; Athari, S. S.; Azadnajafabad, S.; Jafari, A. A.; Baghcheghi, N.; Bagherieh, S.; Bedi, N.; Bijani, A.; Campos, L. A.; Cheraghi, M.; Dangel, W. J.; Darwesh, A. M.; Elbarazi, I.; Elhadi, M.; Foroutan, M.; Galehdar, N.; Ghamari, S. H.; Nour, M. G.; Ghashghaee, A.; Halwani, R.; Hamidi, S.; Haque, S.; Hasaballah, A. I.; Hassankhani, H.; Hosseinzadeh, M.; Kabir, A.; Kalankesh, L. R.; Keikavoosi-Arani, L.; Keskin, C.; Keykhaei, M.; Khader, Y. S.; Kisa, A.; Kisa, S.; Koohestani, H. R.; Lasrado, S.; Sang-Woong, L.; Madadizadeh, F.; Mahmoodpoor, A.; Mahmoudi, R.; Rad, E. M.; Malekpour, M. R.; Malih, N.; Malik, A. A.; Masoumi, S. Z.; Nasab, E. M.; Menezes, R. G.; Mirmoeeni, S.; Mohammadi, E.; javad Mohammadi, M.; Mohammadi, M.; Mohammadian-Hafshejani, A.; Mokdad, A. H.; Moradzadeh, R.; Murray, C. J. L.; Nabhan, A. F.; Natto, Z. S.; Nazari, J.; Okati-Aliabad, H.; Omar Bali, A.; Omer, E.; Rahim, F.; Rahimi-Movaghar, V.; Masoud Rahmani, A.; Rahmani, S.; Rahmanian, V.; Rao, C. R.; Mohammad-Mahdi, R.; Rawassizadeh, R.; Sadegh Razeghinia, M.; Rezaei, N.; Rezaei, Z.; Sabour, S.; Saddik, B.; Sahebazzamani, M.; Sahebkar, A.; Saki, M.; Sathian, B.; SeyedAlinaghi, S.; Shah, J.; Shobeiri, P.; Soltani-Zangbar, M. S.; Vo, B.; Yaghoubi, S.; Yigit, A.; Yigit, V.; Yusefi, H.; Zamanian, M.; Zare, I.; Zoladl, M.; Malekzadeh, R.; Naghavi, M..
Archives of Iranian Medicine ; 25(10):666-675, 2022.
Article in English | EMBASE | ID: covidwho-20241919

ABSTRACT

Background: Since 1990, the maternal mortality significantly decreased at global scale as well as the North Africa and Middle East. However, estimates for mortality and morbidity by cause and age at national scale in this region are not available. Method(s): This study is part of the Global Burden of Diseases, Injuries, and Risk Factors study (GBD) 2019. Here we report maternal mortality and morbidity by age and cause across 21 countries in the region from 1990 to 2019. Result(s): Between 1990 and 2019, maternal mortality ratio (MMR) dropped from 148.8 (129.6-171.2) to 94.3 (73.4-121.1) per 100 000 live births in North Africa and Middle East. In 1990, MMR ranged from 6.0 (5.3-6.8) in Kuwait to 502.9 (375.2-655.3) per 100 000 live births in Afghanistan. Respective figures for 2019 were 5.1 (4.0-6.4) in Kuwait to 269.9 (195.8-368.6) in Afghanistan. Percentages of deaths under 25 years was 26.0% in 1990 and 23.8% in 2019. Maternal hemorrhage, indirect maternal deaths, and other maternal disorders rank 1st to 3rd in the entire region. Ultimately, there was an evident decrease in MMR along with increase in socio-demographic index from 1990 to 2019 in all countries in the region and an evident convergence across nations. Conclusion(s): MMR has significantly declined in the region since 1990 and only five countries (Afghanistan, Sudan, Yemen, Morocco, and Algeria) out of 21 nations didn't achieve the Sustainable Development Goal (SDG) target of 70 deaths per 100 000 live births in 2019. Despite the convergence in trends, there are still disparities across countries.Copyright © 2022 Academy of Medical Sciences of I.R. Iran. All rights reserved.

7.
National Journal of Clinical Anatomy ; 11(2):113-117, 2022.
Article in English | EMBASE | ID: covidwho-20241128

ABSTRACT

Medical education, an integral part of the modern health-care system, had faced the thrust of the outbreak for the last couple of years. Although the immediate impacts were trivial and managed with online pedagogical approach, on a long run, it seems to spill serious repercussions on medical students, teaching faculties, and administration. Different countries are handling with the situation depending on their financial conditions, task force, and resource allocation. Hence, momentarily, it is quite impractical to reach a global consensus regarding what is the best for students and communities in long run. Meanwhile, each country needs to formulate its own regime to continue with high standard medical teaching and training. Obviously, it may solicit time span, prioritization, and empathy to restructure the medical education without disfiguring its original fabric. The unprecedented use of online pedagogy (prerecorded lectures, medical simulations, virtual cadavers, and video conferencing) has transformed medical education drastically. Although these newer teaching-training policies assisted us to continue with the ongoing curriculum, medical placement/clerkship just resumed with necessary precautions. The assessment part needs extra care and vigilance, as any change or incorporation of newer methods of assessment may even worsen the present state of affairs for both the assessor and the student.Copyright © 2022 National Journal of Clinical Anatomy.

8.
Value in Health ; 26(6 Supplement):S237-S238, 2023.
Article in English | EMBASE | ID: covidwho-20240135

ABSTRACT

Objectives: To understand changes to granting access to novel vaccines by NITAG and payers and how prevention has become a focus in many markets Methods: Secondary research by studying various NITAG documents and published articles followed by primary research with experts in EU4 and UK Results: For NITAG recommendations, disease burden, vaccine efficacy, vaccine safety, followed by Epidemiology and mathematical modelling are conducted by most Western countries. Published studies on efficacy, effectiveness and reactogenicity are considered as key reference. UK specifically takes into account health economic modelling outputs. Recommendations in other markets are also considered in making local decisions. For vaccine funding payers consider the efficacy, durability and dosing regimen as key drivers, followed by aspects of strain coverage, formulation and storage. Platform were not considered by payers, while physicians considered it to be very important. For cost containment reasons, many NITAGs issue a recommendation for a narrow patient population Payers in all markets indicated that there is focus or prioritization of prevention strategies from ongoing COVID-19 pandemic and are likely to remain. UK for instance has increased its prevention budgets;however, this does not mean there is higher willingness to pay. In Germany there is no ring-fenced prevention specific budget. Conclusion(s): Severity of the disease is an important criterion in assessing the burden, an influential factor in vaccine decision making. In all countries in focus, Payers anticipate that the evaluation of new vaccines launched post-COVID-19 to be faster. Structural changes in Italy (restructure of AIFA and new NITAG) and UK (new public health agency), add to uncertainties on timelines. The length of the evaluation process will depends mainly on pre-work done with availability of local data on burden, epidemiology, and cost-effectiveness modelling.Copyright © 2023

9.
Hepatoma Research ; 8(no pagination), 2022.
Article in English | EMBASE | ID: covidwho-20239461
10.
Cancer Research, Statistics, and Treatment ; 5(2):267-268, 2022.
Article in English | EMBASE | ID: covidwho-20239096
11.
Biomedicine (India) ; 43(2):649-654, 2023.
Article in English | EMBASE | ID: covidwho-20238245

ABSTRACT

Introduction and Aim: India experienced the peak of the second wave of COVID-19 during April to June 2021. Massive surge of cases resulting in shortage of beds and oxygen, home care was recommended as a strategy for management of asymptomatic/mild COVID-19 cases. The present study was undertaken to perform home visits and monitor COVID 19 patients who are a part of home-based care programme (HBCP) in Puttur taluk of Dakshina Kannada district, identification and immediate referral of patients with red flag signs/ symptoms and to identify barriers/challenges faced by health care staff in implementing the programme. Methodology: The present study was a cross-sectional study with universal sampling. It was carried out as part of a district programme for management of home isolation COVID-19 patients. The team visited the houses of COVID-19 patients and evaluated them. Result(s): A total of 112 COVID-19 patients were in home isolation during the study period in Puttur Taluk. Hypertension (29.5%) was the most common co-morbidity and nearly two-fifths (41.1%) of the study participants had one or more comorbidities. Almost two-third (63%) of the patients with comorbidities were symptomatic compared to only 29.4% of patients without any comorbidities. Of the six patients who had saturation of less than 95% five were more than 60 years of age, only one had received vaccination against COVID-19 and all had comorbidities. The HBCP had to face several challenges as the team members could not be in full PPE because of long distances between the houses and hard to reach areas. Conclusion(s): Overall, it is a helpful initiative for patients as the health services were provided at the doorstep during the time of restriction of movement. This can be an important tool in managing not only COVID pandemic but also future outbreaks that may follow.Copyright © 2023, Indian Association of Biomedical Scientists. All rights reserved.

12.
AIP Conference Proceedings ; 2685, 2023.
Article in English | Scopus | ID: covidwho-20236995

ABSTRACT

A quantitative method is adopted to survey 197 students at the department of social work at a university in Taiwan from April to May in 2020. The study aims to explore the impact of the new coronavirus on social work students' career determination. The result presents the participants with higher social loneliness have lower "Career Determination of Clinical Medical Social Work (CDCMSW)", and the mental burden feeling, and family relationship are predictive of the CDCMSW. © 2023 Author(s).

13.
Nieren- und Hochdruckkrankheiten ; 52(4):177, 2023.
Article in English | EMBASE | ID: covidwho-20236035

ABSTRACT

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.

14.
Journal of Translational Internal Medicine ; 11(1):15-18, 2023.
Article in English | EMBASE | ID: covidwho-20235920
15.
Value in Health ; 26(6 Supplement):S195, 2023.
Article in English | EMBASE | ID: covidwho-20235007

ABSTRACT

Objectives: According to the CDC, as of December 2022, almost one in three Americans had confirmed COVID-19 infection;yet only a small portion generated healthcare claims related to COVID-19. Higher burden of COVID-19 cases in Northeastern states compared to other US regions has been documented. This study examined the regional variation in demographic characteristics and treatment patterns among patients with a claim for COVID-19 in a nationwide US claims database. Method(s): Analysis of data from over 277 million patients in IQVIA's longitudinal medical and pharmacy claims databases resulted in a cohort of 17,682,111 patients with COVID-19 diagnosis between 4/1/2020 and 4/30/2022. Demographic characteristics and treatment rates for key approved and un-approved COVID-19 therapies were assessed and stratified by region. Result(s): Among patients in the database, 6.4% had a COVID-19 diagnosis. The proportion was higher in the Northeast (7.1%) and South (6.9%) compared with the West (4.8%). The highest proportion of patients were aged 18-44 years (32.7% in South to 35.2% in West). Over a fifth of the patients were >= 65 years old (US overall= 23.7%;22.5% in Northeast to 25.8% in Midwest). Approximately 57% of the patients nationally and within each region were women. For approved medications, utilization ranged from 1.7% in Northeast to 2.7% in Midwest (overall:2.2%) for remdesivir;0.7% in Northeast to 2.2% in South (overall: 1.5%) for casirivimab/imdevimab. For unapproved medications, utilization ranged from 0.9% in Northeast to 1.6% in South (overall:1.3%) for hydroxychloroquine and 0.4% in Northeast to 1.8% in South (overall:1.1%) for ivermectin. Conclusion(s): Less than one in five US cases of COVID-19 had a claim with diagnosis of COVID-19. Use of COVID-19 specific medications remained low throughout the pandemic. Despite the higher disease burden, proportion of patients with claims and receiving COVID-19 treatment were low nationally, particularly in the northeast US region.Copyright © 2023

16.
Journal of Psychosomatic Research ; Conference: 10th annual scientific conference of the European Association of Psychosomatic Medicine (EAPM). Wroclaw Poland. 169 (no pagination), 2023.
Article in English | EMBASE | ID: covidwho-20234884

ABSTRACT

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

17.
Gerontol Geriatr Med ; 9: 23337214231176698, 2023.
Article in English | MEDLINE | ID: covidwho-20244791

ABSTRACT

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.

18.
UCL Open Environ ; 4: e041, 2022.
Article in English | MEDLINE | ID: covidwho-20244780

ABSTRACT

The impact of the coronavirus 2019 (Covid-19) pandemic on different countries and populations is well documented in quantitative studies, with some studies showing stable mental health symptoms and others showing fluctuating symptoms. However, the reasons behind why some symptoms are stable and others change are under-explored, which in turn makes identifying the types of support needed by participants themselves challenging. To address these gaps, this study thematically analysed 925 qualitative responses from five open-ended responses collected in the UCL-Penn Global COVID Study between 17 April and 31 July 2021 (Wave 3). Three key themes that comprised 13 codes were reported by participants across countries and ages regarding the impact of Covid-19 on their health, both mental and physical, and livelihoods. These include: (1) Outlook on self/life, (2) Self-improvement, and (3) Loved ones (friends and family). In terms of support, while 2.91% did not require additional support, 91% wanted support beyond financial support. Other unexpected new themes were also discussed regarding vulnerable populations suffering disproportionately. The pandemic has brought into sharp focus various changes in people's mental health, physical health and relationships. Greater policy considerations should be given to supporting citizens' continued access to mental health when considering pandemic recovery.

19.
J Patient Rep Outcomes ; 7(1): 48, 2023 05 26.
Article in English | MEDLINE | ID: covidwho-20244694

ABSTRACT

BACKGROUND: Symptom expression in SARS-CoV-2 infection (COVID-19) may affect patients already symptomatic with cancer. Patient-reported outcomes (PROs) can describe symptom burden during the acute and postacute stages of COVID-19 and support risk stratification for levels of care. At the start of the COVID-19 pandemic, our purpose was to rapidly develop, launch through an electronic patient portal, and provide initial validation for a PRO measure of COVID-19 symptom burden in patients with cancer. METHODS: We conducted a CDC/WHO web-based scan for COVID-19 symptoms and a relevance review of symptoms by an expert panel of clinicians treating cancer patients with COVID-19 to create a provisional MD Anderson Symptom Inventory for COVID-19 (MDASI-COVID). English-speaking adults with cancer who tested positive for COVID-19 participated in the psychometric testing phase. Patients completed longitudinal assessments of the MDASI-COVID and the EuroQOL 5 Dimensions 5 Levels (EQ-5D-5L) utility index and visual analog scale, which were presented through an electronic health record patient portal. To test the validity of the MDASI-COVID to distinguish between known groups of patients, we hypothesized that patients hospitalized, including having a hospitalization extended, for COVID-19 versus those not hospitalized would experience higher symptom burden. Correlation of mean symptom severity and interference scores with relevant EQ-5D-5L scores tested concurrent validity. The reliability of the MDASI-COVID was evaluated by calculating Cronbach alpha coefficients and test-retest reliability was evaluated by calculating Pearson correlation coefficients between the initial assessment and a second assessment no more than 14 days later. RESULTS: The web-based scan found 31 COVID-19-related symptoms; rankings of a 14-clinician expert panel reduced this list to 11 COVID-specific items to be added to the core MDASI. Time from literature scan start in March 2020 to instrument launch in May 2020 was 2 months. Psychometric analysis established the MDASI-COVID's reliability, known-group validity, and concurrent validity. CONCLUSIONS: We were able to rapidly develop and electronically launch a PRO measure of COVID-19 symptom burden in patients with cancer. Additional research is needed to confirm the content domain and predictive validity of the MDASI-COVID and define the symptom burden trajectory of COVID-19.


Subject(s)
COVID-19 , Neoplasms , Adult , Humans , Pandemics , Reproducibility of Results , COVID-19/diagnosis , SARS-CoV-2 , Neoplasms/complications
20.
AIMS Public Health ; 10(2): 456-468, 2023.
Article in English | MEDLINE | ID: covidwho-20243264

ABSTRACT

Introduction: Caring for the chronically ill at home is a particularly demanding process that can place a great burden on the caregiver. International and Greek studies underline and confirm this problem. In addition, family caregivers are not supported by the health systems of the different countries, especially in Greece, where the system relies mainly on the family to care for these patients, which is even more challenging during the Covid-19 pandemic. Aim: The aim of this study is to evaluate the psychological burden of family caregivers of the chronically ill and the outcomes of care for these individuals. It also aims to assess the intensity of burden and changes in quality of life of family caregivers by demographic characteristics. Methods: The sample of the study was a random sample and consisted of 102 family caregivers of chronically ill patients registered in home care of "Metaxa" hospital. The scales (BAKAS/BCOS) and (HADS) were used for data collection. SPSS 25 statistical package was used for statistical analysis of the results. Results: The results of the study, calculated with the BCOS scale, show a low burden (-0.93) of family caregivers, patients with chronic diseases and moderate depression and anxiety. The results of the analysis associate the intensity of family caregiver burden with increased levels of anxiety and depression. The factors that affect burden are gender, with women having higher burden, living with the patient, and low education level. According to the HADS anxiety scale, family caregivers had an average score of 11, indicating a moderate level of anxiety, and for depression, the average score was 10.4, also indicating a moderate level of depression. The results indicate that the state needs to support family caregivers and take immediate action to create structures and implement actions to help families continue in their difficult roles in a pain-free manner.

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