Experiences of the COVID-19 pandemic: A survey of patients on home parenteral nutrition.
Ontology highlight
ABSTRACT:
SUBMITTER: McCulloch A
PROVIDER: S-EPMC9161689 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:BACKGROUND:Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients' and family caregivers' experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO. METHODS:This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n?=?57) were carried out with 20 women considered for HPN and 13 of their family caregivers. RESULTS:Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70?days (range 8-506) and for those 17 on HPN was 156?days (range 46-506). Women experienced HPN as one facet of their illness, but viewed it as a "lifeline" that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state. CONCLUSIONS:Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.
| S-EPMC6936090 | biostudies-literature
Project description: Not available
| S-BSST563 | biostudies-other
Project description:BackgroundAs teledermatology has been widely adopted during the COVID-19 pandemic, it is essential to examine patients' experiences and satisfaction with teledermatology.ObjectiveWe aimed to assess the teledermatology experiences of new and existing clinic patients in the context of the rapid shift toward teledermatology practices during the COVID-19 pandemic.MethodsWe conducted a cross-sectional study of 184 teledermatology patients who were assessed during the COVID-19 pandemic at a major southeastern medical center from May 13 to June 5, 2020. The primary outcome was patient satisfaction levels among new and existing patients. The secondary outcome was patients' willingness to use teledermatology in the future.ResultsOf the 288 teledermatology patients who were assessed during the study period, 184 (63.9%) completed the survey. Patients reported high overall satisfaction with teledermatology, with 86.4% (159/184) of participants reporting positive overall satisfaction and experiences with teledermatology. New patients had significantly higher Likert scores for overall satisfaction with teledermatology than those of follow-up patients (new patients: mean 4.70; existing patients: mean 4.43; P=.03). Overall, patients' satisfaction with teledermatology did not significantly differ based on age (P=.36), race and ethnicity (P=.46), education level (P=.11), residence (P=.74), or insurance status (P=.74). There were no significant differences in overall satisfaction between patients with and without prior telehealth experience (P=.53), between the video and telephone visit types (P=.17), and among platform types (P=.22). Prior telehealth experience was associated with higher odds of being willing to use telehealth in the future (odds ratio 2.39, 95% CI 1.31-4.35; P=.004).ConclusionsThis cross-sectional survey study demonstrates that during the rapid expansion of teledermatology, new clinic patients had significantly higher scores for overall satisfaction with their teledermatology experience compared to those of established clinic patients (P=.03). Prior telehealth experience was associated with higher odds of being willing to use teledermatology in the future. Overall, teledermatology expansion was met with high levels of patient satisfaction during the COVID-19 pandemic.
| S-EPMC8104278 | biostudies-literature
Project description: Not available
| S-EPMC10486215 | biostudies-literature
Project description:Since there is little knowledge regarding the quality of life (QoL) of cancer patients on home parenteral nutrition (HPN), we planned a prospective, longitudinal, double-center study to investigate the changes of QoL in these patients. One hundred and eleven adult cancer patients who were candidates for HPN following the indications of the European guidelines were consecutively enrolled. For QoL analysis, EORTC QLQ-C30 questionnaires were filled at the HPN start and after 1, 2, 3, and 4 months, and scores changes over time were analyzed according to the univariate mixed-effects linear model for repeated measures. Most patients had gastrointestinal cancers, were severely malnourished, and were in stage IV; two-thirds were still receiving oncologic treatments. Median weight loss over 3 months and body mass index were 11.7% and 20.7, respectively. Median survival was 4.7 (1-42) months; 67 and 34% of patients survived 3 and 6 months, respectively. Global QoL, physical functioning, role functioning, emotional functioning, appetite loss, and fatigue scores had a statistically significant trend over time (P < 0.001, P < 0.001, P = 0.007, P < 0.001, P = 0.004, P = 0.022, respectively). At the univariate analyses, the determinants significantly associated with changes in trend over time for physical, role, and emotional functioning were oncologic treatments (P < 0.001, P = 0.014, P = 0.040, respectively) and for appetite loss they were weight loss and Karnofsky performance status (P = 0.003, P = 0.023, respectively). Global QoL, physical, role, and emotional functioning improved during HPN even in advanced cancer patients on oncologic treatments.
| S-EPMC5504329 | biostudies-other
Project description:BackgroundThe objective of this study was to explore Canadian emergency physicians' experiences, concerns, and perspectives during the first wave of the coronavirus disease (COVID-19) pandemic.MethodsThis cross-sectional survey of physician members of Pediatric Emergency Research Canada and the Canadian Association of Emergency Physicians explored: personal safety/responsibility to care; patient interactions; ethical issues in pandemic care; institutional dynamics and communication practices. Data analysis was descriptive: categorical data were summarised with frequency distributions, continuous data [100 mm visual analog scales (VAS)] were analysed using measures of central tendency. Short open-ended items were coded to identify frequencies of responses.ResultsFrom June 29 to July 29, 2020, 187 respondents (13% response rate) completed the survey: 39% were from Ontario and 20% from Quebec, trained in general (50%) or pediatric (37%) emergency medicine. Respondents reported a high moral obligation to care for patients (97/100, IQR: 85-100, on 100 mm VAS). Fear of contracting COVID-19 changed how 82% of respondents reported interacting with patients, while 97% reported PPE negatively impacted patient care. Despite reporting a high proportion of negative emotions (84%), respondents (59%) were not/slightly concerned about their mental health. Top concerns included a potential second wave, Canada's financial situation, worldwide solidarity, and youth mental health. Facilitators to provide emergency care included: teamwork, leadership, clear communications strategies.ConclusionCanadian emergency physicians felt a strong sense of responsibility to care, while dealing with several ethical dilemmas. Clear communication strategies, measures to ensure safety, and appropriate emergency department setups facilitate pandemic care. Emergency physicians were not concerned about their own mental health, requiring further exploration.
| S-EPMC8127493 | biostudies-literature
Project description:To slow the spread of COVID-19, many nonessential businesses, daycares, and schools closed, and areas imposed "stay-at-home" orders. Closures led to young children spending more time at home, traditionally, the place where more than one-half of unintentional pediatric injuries occur. The objective of the current study was to describe parental safety perceptions and confidence, safety device purchase and installation, and injury prevention practices and behaviors, in homes with children 6 years of age and younger, before and during the COVID-19 pandemic. A cross-sectional survey with a convenience sample of US participants, 18 years or older, was conducted from November 2020 to February 2021. Parents of children (≤ 6 years) were recruited via social media ads and posts on Facebook and Twitter and invited to complete an anonymous, online survey about their home safety practices before and during the COVID-19 stay-at-home order. Upon completion, parents could participate in a prize drawing to receive one of five $100 gift cards. A total of 499 participants completed the survey. Most (47.9%) were 45-54 years of age and reported the amount of time at home increased for them (93.9%) and their children (90.6%) during the stay-at-home period. Thirty-seven percent (36.9%) of parents considered their homes safe but recognized room for improvement and felt confident in their ability to make their homes safe for their children (72.8%). From the time before until the COVID-19 stay-at-home orders were in place, parents increased their home injury prevention practices (42.3%). Parents that had identified unsafe areas in the home before the stay-at-home order were significantly more likely to increase their safety behaviors, take childproofing actions, and purchase or install safety devices during the stay-at-home order (p < 0.0001). Parents with younger children (5 years) were significantly more likely than parents with older children to take childproofing actions (p < .0001) including purchasing and installing safety devices (p < 0.0001). Spending more time at home during the COVID-19 pandemic may have helped the sampled parents, especially those with younger children, identify unsafe areas in their homes and encourage them to modify their behaviors, and purchase and install safety devices to help make their homes safer for their children.
| S-EPMC9768763 | biostudies-literature
Project description:BackgroundA large portion of COVID-19 cases and deaths in the United States have occurred in nursing homes; however, current literature including the frontline perspective of staff working in nursing homes is limited. The objective of this qualitative assessment was to better understand what individual and facility level factors may have contributed to the impact of COVID-19 on Certified Nursing Assistants (CNAs) and Environmental Services (EVS) staff working in nursing homes.MethodsBased on a simple random sample from the National Healthcare Safety Network (NHSN), 7,520 facilities were emailed invitations requesting one CNA and/or one EVS staff member for participation in a voluntary focus group over Zoom. Facility characteristics were obtained via NHSN and publicly available sources; participant demographics were collected via SurveyMonkey during registration and polling during focus groups. Qualitative information was coded using NVIVO and Excel.ResultsThroughout April 2021, 23 focus groups including 110 participants from 84 facilities were conducted homogenous by participant role. Staffing problems were a recurring theme reported. Participants often cited the toll the pandemic took on their emotional well-being, describing increased stress, responsibilities, and time needed to complete their jobs. The lack of consistent and systematic guidance resulting in frequently changing infection prevention protocols was also reported across focus groups.ConclusionsAddressing concerns of low wages and lack of financial incentives may have the potential to attract and retain employees to help alleviate nursing home staff shortages. Additionally, access to mental health resources could help nursing home staff cope with the emotional burden of the COVID-19 pandemic. These frontline staff members provided invaluable insight and should be included in improvement efforts to support nursing homes recovering from the impact of COVID-19 as well as future pandemic planning.
| S-EPMC8592470 | biostudies-literature
Project description:BackgroundMalnutrition is a common problem in patients with cancer. One possible strategy to prevent malnutrition and further deterioration is to administer home-parenteral nutrition (HPN). While the effect on survival is still not clear, HPN presumably improves functioning and quality of life. Thus, patients' experiences concerning functioning and quality of life need to be considered when deciding on the provision of HPN. Currently used quality of life measures hardly reflect patients' perspectives and experiences. The objective of our study was to investigate the perspectives of patients with cancer on their experience of functioning and health in relation to HPN in order to get an item pool to develop a comprehensive measure to assess the impact of HPN in this population.MethodsWe conducted a series of qualitative semi-structured interviews. The interviews were analysed to identify categories of the International Classification of Functioning, Disability and Health (ICF) addressed by patients' statements. Patients were consecutively included in the study until an additional patient did not yield any new information.ResultsWe extracted 94 different ICF-categories from 16 interviews representing patient-relevant aspects of functioning and health (32 categories from the ICF component 'Body Functions', 10 from 'Body Structures', 32 from 'Activities & Participation', 18 from 'Environmental Factors'). About 8% of the concepts derived from the interviews could not be linked to specific ICF categories because they were either too general, disease-specific or pertained to 'Personal Factors'. Patients referred to 22 different aspects of functioning improving due to HPN; mainly activities of daily living, mobility, sleep and emotional functions.ConclusionsThe ICF proved to be a satisfactory framework to standardize the response of patients with cancer on HPN. For most aspects reported by the patients, a matching concept and ICF category could be found. The development of categories of the component 'Personal Factors' should be promoted to close the existing gap when analyzing interviews using the ICF. The identification and standardization of concepts derived from individual interviews was the first step towards creating new measures based on patients' preferences and experiences which both catch the most relevant aspects of functioning and are sensitive enough to monitor change associated to an intervention such as HPN in a vulnerable population with cancer.
| S-EPMC2862019 | biostudies-literature
Project description:BackgroundKidney disease is a frequent but underestimated complication in patients suffering from intestinal failure (IF) treated by long-term home parenteral nutrition (HPN). The evolution in glomerular filtration rate (GFR) over time is poorly characterized. The current equations for estimating GFR have limited precision. No study has specifically investigated the reliability of recent creatinine-based estimated GFR (eGFR) equations in this population. The aim of this study was to evaluate the renal function decline under home parenteral nutrition (HPN) with a gold standard method and compare the performances of routinely used eGFR equations.MethodsForty patients with HPN and two or more GFR measurements were retrospectively studied. The renal function decline was calculated by the slope drawn between the successive measured GFRs (mGFRs). The performances of the Modification of Diet in Renal Disease, Chronic Kidney Disease Epidemiology Collaboration, full age spectrum and revised Lund-Malmö equations were compared with reference methods (inulin or iohexol clearance).ResultsThe mean mGFR was 78 ± 28 mL/min/1.73 m2. The annual decline of mGFR was -1.9 mL/min/1.73 m2/year. No predisposing factor was identified to predict impairment in renal function. eGFR formulas grossly overestimated mGFR and had a low level of accuracy.ConclusionsPatients with IF are at significant risk for impaired renal function. In this population, the tested eGFR equations were inaccurate. However, monitoring kidney function with mGFR remains important in these patients, as their GFR regularly declines and no specific risk factor has yet been identified.
| S-EPMC7986339 | biostudies-literature