Experiences of the COVID-19 pandemic: A survey of patients on home parenteral nutrition.
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ABSTRACT:
SUBMITTER: McCulloch A
PROVIDER: S-EPMC9161689 | biostudies-literature | 2022 Aug
REPOSITORIES: biostudies-literature
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Experiences of the COVID-19 pandemic: A survey of patients on home parenteral nutrition.
McCulloch Adam A Jones Ilva I Fletcher Jane J Malhi Hardip H Cooper Sheldon C SC
Clinical nutrition ESPEN 20220602
Patients on home parenteral nutrition (HPN) have had to endure sweeping changes to their personal lives and medical care during the COVID-19 pandemic. We evaluated the patients' perspectives of these changes at our Intestinal Failure/Rehabilitation centre in order to initiate a debate on improving HPN care. The findings point to high levels of anxiety and depression amongst the 35 patients surveyed with many reporting frustration at conflicting information from different sources. Telephone consu ...[more]
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Project description:Background and aimsTo investigate the incidence and the severity of COVID-19 infection in patients enrolled in the database for home parenteral nutrition (HPN) for chronic intestinal failure (CIF) of the European Society for Clinical Nutrition and Metabolism (ESPEN).MethodsPeriod of observation: March 1st, 2020 March 1st, 2021.Inclusion criteriapatients included in the database since 2015 and still receiving HPN on March 1st, 2020 as well as new patients included in the database during the period of observation. Data related to the previous 12 months and recorded on March 1st 2021: 1) occurrence of COVID-19 infection since the beginning of the pandemic (yes, no, unknown); 2) infection severity (asymptomatic; mild, no-hospitalization; moderate, hospitalization no-ICU; severe, hospitalization in ICU); 3) vaccinated against COVID-19 (yes, no, unknown); 4) patient outcome on March 1st 2021: still on HPN, weaned off HPN, deceased, lost to follow up.ResultsSixty-eight centres from 23 countries included 4680 patients. Data on COVID-19 were available for 55.1% of patients. The cumulative incidence of infection was 9.6% in the total group and ranged from 0% to 21.9% in the cohorts of individual countries. Infection severity was reported as: asymptomatic 26.7%, mild 32.0%, moderate 36.0%, severe 5.3%. Vaccination status was unknown in 62.0% of patients, non-vaccinated 25.2%, vaccinated 12.8%. Patient outcome was reported as: still on HPN 78.6%, weaned off HPN 10.6%, deceased 9.7%, lost to follow up 1.1%. A higher incidence of infection (p = 0.04), greater severity of infection (p < 0.001) and a lower vaccination percentage (p = 0.01) were observed in deceased patients. In COVID-19 infected patients, deaths due to infection accounted for 42.8% of total deaths.ConclusionsIn patients on HPN for CIF, the incidence of COVID-19 infection differed greatly among countries. Although the majority of cases were reported to be asymptomatic or have mild symptoms only, COVID-19 was reported to be fatal in a significant proportion of infected patients. Lack of vaccination was associated with a higher risk of death.
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Project description:BackgroundPatients supported with home parenteral nutrition (HPN) often report poor sleep; however, limited research has been conducted to objectively measure sleep patterns of HPN-dependent patients.MethodsWe aimed to characterize the sleep patterns of patients receiving HPN through 7-day actigraphy in a home-based observational study. Sleep measures of clinical importance were derived from actigraphy, including sleep duration, sleep efficiency, sleep onset latency, and wake after sleep onset. Participants also completed validated sleep surveys.ResultsTwenty participants completed all study procedures (mean [SD]: age = 51.6 [13.9] years, body mass index = 21.4 [4.6], and 80% female). The population median (IQR) for sleep duration, sleep efficiency, sleep onset latency, and wake after sleep onset was 6.9 (1.1) h, 83.3% (7.8%), 11.8 (7.1) min, and 57.2 (39.9) min, respectively, and 55%, 60%, 35%, and 100% of participants did not meet the recommendations for these measures from the National Sleep Foundation. Sixty-five percent of participants reported napping at least once during the 7-day period. Based on the Insomnia Severity Index, 70% of participants were classified as having subthreshold or more severe insomnia. Based on the Pittsburgh Sleep Quality Index, 85% were classified as having significant sleep disturbance.ConclusionMost HPN-dependent patients likely have disrupted sleep largely driven by difficulty maintaining sleep. The extent to which HPN contributed to poor sleep cannot be elucidated from this observational study. Addressing known factors that contribute to sleep disruption and considering sleep interventions may improve the overall quality of life of patients receiving HPN.
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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.
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Project description:<h4>Background
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Project description:Rationale & objectiveThe coronavirus disease 2019 (COVID-19) pandemic imposed several changes in the care of patients with kidney failure receiving dialysis. We explored patient care experiences during the pandemic.Study designThe study team verbally administered surveys including Likert scale multiple-choice questions and open-ended questions and recorded responses.Setting & participantsSurveys were administered to adults receiving dialysis through an academic nephrology practice after the first wave of the COVID-19 pandemic.ExposureOutpatient dialysis treatment during the COVID-19 pandemic.OutcomesPerceptions of care and changes in health.Analytical approachMultiple-choice responses were quantified using descriptive statistics. Thematic analysis was used to code open-ended responses and derive themes surrounding patient experiences.ResultsA total of 172 patients receiving dialysis were surveyed. Most patients reported feeling "very connected" to the care teams. Seventeen percent of participants reported transportation issues, 6% reported difficulty obtaining medications, and 9% reported difficulty getting groceries. Four themes emerged as influencing patient experiences during the pandemic: 1) the COVID-19 pandemic did not significantly affect participants' experience of dialysis care; 2) the COVID-19 pandemic significantly impacted other aspects of participants' lives, which in turn were felt to affect mental and physical health; 3) regarding dialysis care experience more generally, participants valued consistency, dependability, and personal connection to staff; and 4) the COVID-19 pandemic highlighted the importance of external social support.LimitationsSurveys were administered early in the COVID-19 pandemic, and patient perspectives have not been reassessed. Further qualitative analysis using semi-structured interviews was not performed. Survey distribution in additional practice settings, using validated questionnaires, would increase generalizability of the study. The study was not powered for statistical analysis.ConclusionsEarly in the COVID-19 pandemic, perceptions of dialysis care were unchanged for most patients. Other aspects of participants' lives were impacted, which affected their health. Subpopulations of patients receiving dialysis may be more vulnerable during the pandemic: those with histories of mental health conditions, non-White patients, and patients treated by in-center hemodialysis.Plain-language summaryPatients with kidney failure continue to receive life-sustaining dialysis treatments during the coronavirus disease 2019 (COVID-19) pandemic. We sought to understand perceived changes in care and mental health during this challenging time. We administered surveys to patients receiving dialysis after the initial wave of COVID-19, asking questions on topics including access to care, ability to reach care teams, and depression. Most participants did not feel that their dialysis care experiences had changed, but some reported difficulties in other aspects of living such as nutrition and social interactions. Participants highlighted the importance of consistent dialysis care teams and the availability of external support. We found that patients who are treated with in-center hemodialysis, are non-White, or have mental health conditions may have been more vulnerable during the pandemic.
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Project description:IntroductionBiosafety professionals were called to action during the COVID-19 pandemic. They were tasked with prescribing measures to keep workers and the community safe while often not having accurate information at their fingertips. Understanding biosafety professionals' experiences may help shape new approaches that could further advance preparedness and resilience goals for future pandemics. This article discusses the overall response efforts of the biosafety community.ObjectivesThe main objective of this article is to quantitatively and qualitatively interrogate the responses to an email survey sent to individuals with biosafety responsibilities during the COVID-19 pandemic. This article catalogues those responses and the different aspects in how biosafety professionals were involved in the pandemic. The focus of this research was on aggregate data and summarized results.ResultsA total of 609 out of 654 respondents fully completed the survey, equating to a 93.1% completion rate. Respondents were individuals with varying levels of COVID-19-related responsibilities participating in emergency preparedness and planning, developing laboratory diagnostic capabilities, reviewing clinical trials, developing safety guidelines, writing return-to-work and quarantine procedures, and participating in press releases and communications.ConclusionsBiosafety professionals played important roles during the COVID-19 pandemic, from developing safety protocols for laboratories to resourcing personal protective equipment during a global shortage. They experienced challenges when balancing their home/work lives. Some biosafety professionals were very involved in clinical trials and vaccination efforts, but most were not. Overall, there were significant differences in how biosafety professionals were involved in pandemic response efforts.
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Project description:Background: The impact of home parenteral nutrition (HPN) on the quality of life (QoL) of cancer patients has been previously investigated. However, scarce data are available regarding near-death QoL in patients with cancer receiving HPN. This study aims to investigate the changes of QoL in these patients in the last two months before death. Methods: This is a secondary analysis of a previous, prospective, longitudinal, observational study. QoL was assessed using the EORTC QLQ-C30 questionnaire. Results: Eighty-four adult cancer patients who died on HPN and had filled out the questionnaire between 31 and 60 days (M2) and within 30 days prior (M1) to death were included in this analysis. The questionnaires filled out at M2 and M1 were compared with those filled out by the same patients at HPN start (T0). At M2, there was a significant improvement in both the global QoL and symptoms scales (p < 0.001 and p < 0.033, respectively), while at M1, a significant improvement in the global QoL scale persisted (p < 0.035) compared with T0. Conclusions: Our study first reports that HPN, if started early and according to European guidelines, is associated with an improvement in the QoL of patients with cancer even in the last two months before death.
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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.
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