ABSTRACT
Background: East during COVID-19 is a potentially serious and fatal new infection that first broke out in Italys North Eastduring Spring 2020. Among subjects considered more clinically vulnerable, patients with adrenal insufficiency (AI) have a known increased risk of infections, that could lead to poor prognosis and death due to adrenal crisis. Even the psychological and sociooccupational impact of COVID-19 could affect the health of AI patients, requiring a dynamic and continuous adaptation of the daily glucocorticoid (GC) therapy. Aim(s): To investigate if AI patients have a higher risk for COVID-19 infection than the general population, all residents in the red zone Veneto, in North-East Italy. Moreover, based on a purpose-built ADDI-COVID questionnaire, the study aimed to evaluate the subjective perception of an increased risk for COVID-19 infection and pandemic-related psycho-social impact, working life and self-adjustments of GC therapy. Method(s): Open-label, cross-sectional monocentric study on 84 (65 primary and 19 secondary) AI patients, all resident in Veneto, followed-up at the Endocrinology Unit, University-Hospital of Padua, for at least 3 years, in good and stable clinical conditions. At the end of the first COVID-19 wave (by August 2020), all patients underwent serological investigation of anti-SARS-CoV2 IgG and ADDI-COVID questionnaire. All AI patients enrolled were contacted during March-April 2021 to evaluate eventual COVID-19 infection occurrence after the second and third waves, completing a follow-up period of about 12 months. Result(s): All AI patients resulted negative to the serological test for anti-SARS-CoV2 IgG at the end of the first wave of COVID-19. After the second and third pandemic waves, COVID-19 infection occurred in 8 (10%) patients, and none needed intensive care or hospitalization. Half patients felt an increased risk of COVID-19 infection, significantly associated with an increased stress (p = 0,009) and the consequent increase of GC stress-dose (p = 0,002). Only one patient reported adrenal crisis stress correlated. The great majority of the 61 (73%) worker patients changed their working habits during the lockdown, which was inversely related with COVID-19-related stress (p = 0,0015). A significant association was found between workers and endocri- nologist contact (p= 0,046) since 18 among 20 AI patients who contacted the endocrinologist were workers. Discussion and Conclusion(s): Patients with AI residence in Veneto did not show a higher incidence of COVID19-infection compared with general population residents in Veneto after the first pandemic waves. However, the perception of increased COVID- 19 infection risk significantly impacted the psychological well-being, working habits and GC daily doses of AI patients. Especially during this pandemic period, therapeutic patient education was crucial to prevent and treat situations or conditions that could lead to an adrenal crisis. The endocrinologic consultation could help to strengthen the awareness of AI patients, especially if they were workers.
ABSTRACT
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
ABSTRACT
Introduction: de Quervain's syndrome is a painful condition commonly presented to hand therapists. Exercise is utilised as an intervention, but isometric exercise has not been investigated. We aimed to assess the feasibility and safety of isometric thumb extension exercise for de Quervain's syndrome and to explore differences between high-load and low-load isometric exercise. Method(s): This parallel-group randomised clinical feasibility trial included individuals with de Quervain's syndrome. All participants underwent a 2 week washout period where they received an orthosis, education, and range of motion exercises. Eligible participants were then randomised to receive high or low-load isometric thumb extension exercises, performed daily for 4 weeks. Feasibility and safety were assessed by recruitment and drop-out rates, adherence, adverse events, and participant feedback via semi-structured interviews. Secondary outcomes included patient-reported outcomes for pain and function, and blinded assessment of range of motion and strength. Result(s): Twenty-eight participants were randomised. There were no drop-outs after randomisation, and no serious adverse events. Adherence to exercise was 86.7%, with 84% of participants stating they would choose to participate again. There were clinically and statistically significant improvements in pain and function over time (p < 0.001) but not in range of motion or strength. There were no statistically significant between-group differences. Conclusion(s): Isometric thumb extension exercise within a multimodal approach appears a safe and feasible intervention for people with de Quervain's syndrome. A large multi-centre trial would be required to compare high- and low-load isometric exercises. Further research investigating exercise and multimodal interventions in this population is warranted.Copyright © The Author(s) 2023.
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.
ABSTRACT
Background: My Diabetes My Way (MDMW) is NHS Scotland's interactive website, offering education, structured eLearning and online records access for people living with diabetes. We aimed to analyse user activity during the last 12 months. Method(s): Data were collected during the period from November 2021 to October 2022. Registration and user audit logs were analysed, observing activity across all website content and features. Result(s): An average of 62,853 pages were accessed on the public website each month. Significant activity increases were observed in December 2021 (n = 81,237). There were increased views in September 2022 (n = 76,502) and October (n = 73,039) The top five pages accessed were;Coronavirus: advice for people living with diabetes (n = 12,478), FreeStyle Libre (n = 4325), Emergency advice (n = 1576), Blood pressure-reducing your risks of complications (n = 1559) and Blood glucose monitoring and HbA1c targets (n = 1485). eLearning: During this period, 382 individuals completed one of 11 QISMET-accredited structured eLearning courses. eLearning course usage increased in relation to patient awareness activity. Social Media: There are currently 3919 Facebook and 3600 Twitter followers. Records Access: 67,655 patients had registered to access their data and 35,157 had actively accessed their records by the end of October 2022. Patient feedback remains highly positive. Conclusion(s): MDMW is a consistent and reliable resource for people with diabetes and their families to access at any time online. User statistics continue to rise, while latest development plans include the addition of new Patient Reported Outcome Measures, risk prediction features, and enhanced sharing of data with the healthcare team.
ABSTRACT
Objectives: Health is distributed unequally by occupation (Ravesteijn,2013). This research aims to explore patient-reported outcomes by occupation profiles using the National Health and Wellness Survey (NHWS). Method(s): Data from the 2022 US NHWS included employed respondents at least 18 years of age with information on occupation profile, defined as 22 categories from the Bureau of Labor Statistics. Descriptive statistics were used to analyze respondent characteristics and outcomes such as COVID-19 diagnoses, healthcare resource use over the past six months, and work impairment as measured by the Work Productivity and Activity Impairment Questionnaire (WPAI). Result(s): A total of 35,789 respondents were employed and had occupation information. Respondents were predominantly white (62.0%) and male (53.9%). Sales and Related occupations had the greatest proportion of respondents reporting a COVID-19 diagnosis (16.1%) while Building and Grounds Cleaning and Maintenance had the lowest proportion (3.8%). Educational Instruction and Library had the most respondents reporting that they had received at least one dose of the COVID-19 vaccine (79.2%) while Farming, Fishing, and Forestry had the least respondents (52.9%). Life, Physical, and Social Science had the greatest COVID-19 vaccination rate over the past year (66.5%) while Farming, Fishing, and Forestry had the lowest (45.0%). Office and Administrative Support had the greatest proportion of respondents with a traditional healthcare provider visit (79.8%), but the lowest proportion with an emergency room (ER) visit (12.7%) or a hospitalization (8.1%). Farming, Fishing, and Forestry had the greatest proportion of respondents with an ER visit (41.6%) or hospitalization (41.6%). The greatest proportion of respondents with any overall work impairment or activity impairment was in Farming, Fishing, and Forestry (work: 91.1%, activity: 87.4%) while the lowest proportion was in Office and Administrative Support (work: 50.0%, activity: 53.3%). Conclusion(s): Certain occupation profiles consistently show higher impairment while others consistently show lower impairment.Copyright © 2023
ABSTRACT
Objectives: The objective of this project was to improve healthcare deserts in Sub-Saharan Africa through sustainable knowledge transfer and capacity-building leveraging an advanced cloud-based telemedicine platform. Method(s): In 2022, WTI and its network of partners delivered 2 telehealth devices as part of the effort to create a sustainable platform to address a known health desert in a previously abandoned clinic in the village of Opoji, in the state of Edo, Nigeria. Providers were trained in two cohorts. Global Experts for this project were organized with Providence Health and their Global and Domestic Engagement (GDE) department and trained in telementoring and teleconsulting. Local Specialists were first trained on the platform and then telementored by Global Experts. To better understand the health value outcomes of these interventions, observational research was employed to measure the improvement of patient-to-provider ratios. These ratios were baselined for average patient loads. Result(s): As a result of the pilot, provider-to-patient ratios were improved. Prior to the WTI program, interventions were only available 5% of the time (9 hrs/wk vs 168 hrs/wk), with very basic expertise. After the Opoji Comprehensive Medical Center was reopened and the supporting physicians were scheduled, patients could be seen with a high level of global medical expertise 100% of the time (24 hours per day). Conclusion(s): Telemedicine technology can improve capacity-building in Sub-Saharan Africa with relatively minimal resource allocation in a replicable and scalable manner. Data collection for the pilot did have limitations. The opportunity to collect patient-reported outcomes, including patient satisfaction with telemedicine visits, exists but COVID and other barriers prevented researchers from fully implementing. By mentoring the local specialty hospital staff to deliver care by cloud-based devices, the program has developed an "Africans helping Africans" approach to achieve sustainable capacity building which can be built upon and further researched.Copyright © 2023
ABSTRACT
The proceedings contain 9 papers. The topics discussed include: dulaglutide and NAFLD risk reduction;correlation between plasmatic long pentraxin PTX3 and nodular thyroid disease: a preliminary report;the fructose-bisphosphate aldolase a act as autoantigen in primary autoimmune hypophysitis;cortisol deficiency in Lenvatinib treatment;side effects of mitotane treatment: a retrospective study in 35 patients with adrenocortical carcinoma in adjuvant therapy;non-functioning pituitary adenoma: do predictor factors exist?;incidence and features of adrenal crisis in a series of 133 patients with Addison's disease;serological evidence and self-reported outcomes in patients with adrenal insufficiency during the first waves of COVID-19 in the North-East Italy;and persistent effects of spironolactone after its withdrawal in patients with hyperandrogenic skin disorders.
ABSTRACT
Purpose: This experimental study was conducted during the post-COVID-19 period to investigate the relationship between the quality of life 9 months after and the severity of the SARS-CoV-2 infection in two scenarios: hospitalization (with/without medical oxygen) and outpatient treatment. Methods: We employed the EQ-5D-5L Quality of Life tests and the PSQI as a survey to evaluate respondents' quality of life 9 months after a previous SARS-CoV-2 infection of varying severity. Results: We identified a clear difference in the quality of life of respondents, as measured on the 100-point scale of the EQ-5D-5L test, which was significantly lower 9 months after a previous SARS-CoV-2 infection for Group 1 (n = 14), respondents who had received medical attention for SARS-CoV-2 infection in a hospital with oxygen treatment, compared to those with the SARS-CoV-2 infection who were treated without oxygen treatment (Group 2) (n = 12) and those who were treated on an outpatient basis (Group 3) (n = 13) (H = 7.08 p = 0.029). There were no intergroup differences in quality of life indicators between hospitalized patients (Group 2) and groups 1 and 3. PSQI survey results showed that "mobility," "self-care," "daily activities," "pain/discomfort," and "anxiety/ depression" did not differ significantly between the groups, indicating that these factors were not associated with the severity of the SARS-CoV-2 infection. On the contrary, the respondents demonstrated significant inter-group differences (H = 7.51 p = 0.023) and the interdependence of respiratory difficulties with the severity of clinically diagnosed SARS-CoV-2 infection. This study also demonstrated significant differences in the values of sleep duration, sleep disorders, and daytime sleepiness indicators between the three groups of respondents, which indicate the influence of the severity of the infection. The PSQI test results revealed significant differences in "bedtime" (H = 6.00 p = 0.050) and "wake-up time" (H = 11.17 p = 0.004) between Groups 1 and 3 of respondents. At 9 months after COVID-19, respondents in Group 1 went to bed at a later time (pp = 0.02727) and woke up later (p = 0.003) than the respondents in Group 3. Conclusion: This study is the first of its kind in the current literature to report on the quality of life of respondents 9 months after being diagnosed with COVID-19 and to draw comparisons between cohorts of hospitalized patients who were treated with medical oxygen vs. the cohorts of outpatient patients. The study's findings regarding post-COVID-19 quality of life indicators and their correlation with the severity of the SARS-CoV-2 infection can be used to categorize patients for targeted post-COVID-19 rehabilitation programs.
ABSTRACT
Background/Aims Intraarticular corticosteroid injections (CSI) are used as a short-term treatment for inflammatory arthritis and osteoarthritis. At the outset of the COVID-19 pandemic there was concern regarding the immunosuppressive effect of steroids and the potential risk of COVID-19 infection in patients treated with CSI. There is no universal evidencebased consensus on the optimum dosing of CSI. Nationally there was a mixed response to CSI use during the COVID- 19 pandemic. Early during the pandemic, our Trust advised using only the lowest BNF indicated steroid dose to minimize any potential side effects. Large joints (knees and shoulders) were injected with 40mg of Kenalog compared to 80mg pre pandemic. No previous survey has reported the incidence of covid infection post CSI. The primary aim of this project was to address this gap. A secondary aim was to review the clinical effectiveness of a 'larger' versus 'smaller' steroid dose in CSI. Methods Retrospective data collection was carried out for 107 patients who received CSI during the pandemic. All patients who received CSI within the Trust rheumatology department were followed up with a sixweek phone call. During this consultation the effectiveness of the CSI was considered by asking them to score the effectiveness of the CSI out of 10 (10 being maximum improvement). The incidence of COVID- 19 infection was also recorded. This data was compared to the same data from a group of patients injected with a larger dose of CSI pre-pandemic (n=114). Results The patient reported incidence of COVID-19 infection within 6 weeks of CSI was 1.87%. Patient reported outcomes showed a mean improvement in joint symptoms of 6.97 using 80mg of kenalog, versus 5.02 improvement using the smaller 40mg dose at six week follow up. Interestingly 56% of people injected with a larger dose reported a minimum 8/10 improvement compared to 22% of patients injected with a smaller dose. Conclusion The low incidence of COVID-19 infections following CSI indicates that there is no significant correlation with increased in risk of contracting COVID-19. This study did not collect any data on outcomes of infection but at the time of the phone calls no patients had been hospitalized or died. The incidence of COVID-19 infection was below the national average. Some of the Rheumatology patients injected may have been advised to shield which may have contributed to the lower-than-expected figure. The significantly increased benefit consistently reported by patients supports the use of a higher dose steroid (Kenalog 80mg) versus lower dose (40mg) when injecting large joints in patients with arthritis. It is important to weight up the risks and benefits of CSI but this suggests that we should use the higher dose in clinical practice.
ABSTRACT
Background/Aims During the COVID-19 pandemic, asynchronous consultations were introduced for patients with ankylosing spondylitis (AS). To assess disease activity in the absence of face-to-face clinical review and blood testing, patients submitted patient-reported outcome measures (PROMs) via electronic survey forms which were subsequently triaged by clinicians. We compared pre-pandemic clinician-reported scores with intra-pandemic self-reported scores and assessed clinical outcomes including allocation of follow-up and further management/ treatment escalation. Methods Clinician-reported scores were obtained in-person pre-pandemic (defined as 01/01/2019-01/03/2020). Self-reported BASDAI scores were submitted by patients via electronic forms sent out duringpandemic (defined as 01/12/2020-31/03/22). The responses were stored and analysed in a secure database. These scores are analogous to disease activity scores completed by clinicians during outpatient appointments. Score comparison was performed using Wilcoxon Sign Rank testing. We used the need for a follow-up within 3 months as target for those with severe disease. Data analysis was performed in Microsoft Excel and R (version 4.2.1). Results We noted a significantly higher overall level of patient-reported disease activity during the pandemic. In the total cohort of AS patients, the median BASDAI Score collected during-pandemic increased from 5.30 (n=124, range 0-10) compared to 2.80 pre-pandemic (n=590, range 0-12) (p<0.001). The proportion of patients with severe/active disease (defined as BASDAI >4) increased from 36% pre- to 65% during pandemic. In a smaller cohort of 34 patients for whom we had both pre- and during-pandemic scores, all patient parameters worsened during the pandemic. Notably, median BASDAI increased from 2.65 to 5.62 (p<0.0001). Patients with severe AS increased from 10 (29.4%) to 21 (61.8%) intra-pandemic. Follow-up data was available for 12/21 patients with severe AS during-pandemic. 7/12 patients (58%) received a follow-up appointment within one month;11/12 (91%) were seen within three months. On subsequent clinician assessment, only 7 (58%) of patients with self-reported severe AS were felt to have active disease;treatment was escalated for 3 patients. Conclusion There was a significantly higher reported level of AS disease activity during the COVID-19 pandemic, with 62 % of patients qualifying for biologic therapy (BASDAI >4). In a focussed sample, 91% of patients with new severe disease during-pandemic were followed up within the target of 3 months. The BASDAI score is independent from clinical examination and inflammatory markers, and therefore self-reported score should reliably reflect a patient's perception of disease activity. Further work is required to determine the reason for the increased disease activity observed during pandemic, and for the disparity between clinician impression and score results.
ABSTRACT
Intro: COVID-19 survivors suffer from variable limitations affecting their quality of life. We examined the functional and psychosocial outcomes among COVID-19 patients with moderate-to-severe diseases by three months post-hospitalization. Method(s): This retrospective cohort study included 510 COVID-19 patients admitted to Kepala Batas Hospital with moderate-to-severe diseases, requiring oxygen therapy during hospitalization (Malaysia COVID-19 severity category >=5;WHO scale >=5), between January and August 2021. We followed up with telephone surveillances by 90 days post-discharge from the hospital, assessing their performance in activities of daily living and psychosocial implications. Relevant clinical data were extracted from medical records. We compared patients with low (<10L/ min) versus higher (>=10L/min) oxygen requirements on the patient-reported outcome variables. Finding(s): Among 441 survivors (86.5%), half (n=223, 50.6%) were male, with a relatively young population with a mean age of 50.2 (13.73) years. Only 17.9% were partially vaccinated and 5.7% had complete vaccination before hospitalization. Nearly 70% were supplemented with nasal prong or face mask oxygenation (<10L/ min), 26.1% received high flow oxygenation and 4.1% were mechanically ventilated. By 90-day follow-up, >90% had their functionality returned to baseline before hospitalization. Only 1.6% required home oxygen supplementation. Compared with their baseline functionality, 4.8% were unable to perform basic household chores, 4.1% required assistance in mobilization and 2.5% became fully dependent on caretakers. Among 254 patients returning to work, 98% worked in the same institution but 18.9% required job scope adjustments. About 7.7% experienced post-covid stigma at home and/or work, 3,9% suffered from depression 5.7% became self-isolated and 0.9% had suicidal ideation or attempts. Functional and psychosocial outcomes were similar between patients with low and higher oxygen requirements (all p>0.05). Conclusion(s): Despite fair recovery outcomes reported by survivors with moderate-to-severe disease, a small proportion suffered from significant functional limitations and psychosocial adversity. Post-hospitalization care is essential to screen-detect post-COVID complications and provide timely interventions.Copyright © 2023
ABSTRACT
Background: TheWorld Health Organization declared the outbreak of coronavirus 2 (COVID-19) as a pandemic on March 11, 2020. This led to abundant research to understand nutrition support practices during these unprecedented times. The need for rapid response to a patient's clinical needs, however, left a gap in understanding of the impact the pandemic had on the quality of life (QOL) of patients receiving home parenteral nutrition (HPN). As HPN patients are already vulnerable to having lower QOL scores than the general population, this warrants further exploration. Understanding the HPN patient experience in the setting of the COVID-19 pandemic expands our knowledge so that we can maximize care and support for our patients, resulting in improved patient-reported outcomes. The objective of this study was to determine if there was an association between the COVID-19 pandemic and QOL measurements in patients receiving HPN. Method(s): Inclusion criteria included adult and pediatric patients enrolled in the Total Parenteral Nutrition at Home (HEALTH) registry who completed Short Forms 36 (SF-36) Quality of Life surveys. Data were retrospectively collected from SF-36 surveys and compared between three 12-month time periods: year 1 (March 1, 2019 to February 29, 2020);year 2 (March 1, 2020 to February 28, 2021);and year 3 (March 1, 2021 to February 28, 2022). The primary outcome measure was the difference in mean QOL scores between the 3 time periods for the 8 domains and 2 summary scores. A P value <0.05 was considered statistically significant. The secondary outcome measure was the number of hospitalizations, including length of stay and reason for admission. Result(s): A total of 348 standardized SF-36 surveys from patients across 31 states were included in this study. Clinical and demographic characteristics of the patients are provided in Table 1. QOL measurements for 8 domains and 2 summary scores are provided in Table 2. Six of eight domains and two summary scores were highest during year 1 (pre-COVID pandemic) with a subsequent decrease in year 2 and a slight improvement in year 3. There were no statistically significant differences in QOL scores between any of the three time periods. Role-emotional scores decreased while general health scores improved year over year although again, neither change was statistically significant. Only two hospital admissions were reported as COVID-19 related during year 2. The most prevalent reasons for admission in year 2 and 3 were infection, unrelated to COVID-19 (Table 2). Conclusion(s): SF-36 survey scores in six of the eight domains and two summary scores decreased post pandemic, reflecting a decrease in QOL in HPN patients. As studies have shown the profound influence of the COVID-19 pandemic on both mental health and QOL measurements, clinicians need to consider the impact to our HPN patients who are at risk for overall lower baseline QOL scores. Routinely assessing a patient's QOL during HPN care may help identify areas of support needed to improve both clinical and QOL outcomes. The importance of this practice becomes even more apparent during a challenging experience like the COVID-19 pandemic. (Table Presented).
ABSTRACT
Globally, hepatitis C (26%), alcohol (24%), and hepatitis B (23%) contribute almost equally to the global burden of cirrhosis. The contribution from nonalcoholic fatty liver disease (8%) is small but increasing. Patients with acutely decompensated cirrhosis have a dismal prognosis and frequently progress to acuteon-chronic liver failure, which is characterised by hepatic and extrahepatic organ failure, Cardiovascular alterations including portal hypertension trigger the formation of portocaval shunts and varices. Systemic under filling and arterial hypotension is compensated by vasoconstriction but might decline into a state of aggravated portal hypertension and cirrhotic cardiomyopathy, leading to a hyperdynamic state, microvascular dysfunction and reduced organ perfusion culminating in decompensation. The immune system is dysfunctional showing a contrary co-existence of immune paralysis and immune overstimulation leading to secondary infections and inflammatory response syndrome aggravating cardiovascular alterations but also initiating tissue injury and metabolic alteration. This transition from compensated to decompensated cirrhosis is characterised by the occurrence of ascites, variceal bleeding and/or hepatic encephalopathy or organ failures (in the case of ACLF. Precipitating events for ACLF vary between Western countries (bacterial infection, alcohol intake) and Eastern countries (flare of HBV, superimposed HAV or HEV). In the majority of patients, systemic inflammation is a major driver of progression from compensated to decompensated cirrhosis. Once the first episode of AD develops, systemic inflammation follows a chronic course, with transient periods of aggravation due to proinflammatory precipitants or bursts of bacterial translocation resulting in repeated episodes of AD. The multistate model describing the clinical outcomes of decompensated cirrhosis has been well validated. State 3 is defined by the occurrence of variceal bleeding alone, state 4 by any single non-bleeding event, state 5 by any 2 or more events and the late decompensate state by any event with organ failures either with or without ACLF. 5-year mortality across states from 3 to 5 is in the order of, respectively: 20%, 30%, 88%. With late decompensation mortality ranges between 60 and 80% at 1 year. Cirrhosis is increasingly common and morbid. Optimal utilisation of therapeutic strategies to prevent and control the complications of cirrhosis are central to improving clinical and patient-reported outcomes. Aetiology-focused therapies that can prevent cirrhosis and its complications. These include anti-viral therapies, psychopharmacological therapy for alcohol-use disorder, management of hepatic encephalopathy (HE), ascites, hepatorenal syndrome, non-pain symptoms of cirrhosis including pruritis, muscle cramps, sexual dysfunction and fatigue, and reduce the risk of hepatocellular carcinoma. New disease-modifying agents are expected to be identified in the next few years by systematic drug repurposing and the development of novel molecules currently undergoing pre-clinical or early clinical testing. COVID-19 continues to pose a significant healthcare challenge throughout the world. Comorbidities including diabetes and hypertension are associated with a significantly higher mortality risk. Cirrhosis is associated with an increased risk of all-cause mortality in COVID-19 infection compared to non-cirrhotic patients. Patients with cirrhosis should be considered for targeted public health interventions to prevent COVID-19 infection, such as shielding and prioritisation of vaccination.
ABSTRACT
Background/Aims In our department, patient reported outcome measures (PROMs), including RAPID-3 and PSAID12, were employed during the COVID-19 pandemic in asynchronous consultations for patients with psoriatic arthritis (PsA). We compared pre-pandemic DAS28-CRP with intrapandemic PROMs to assess changes in disease activity since the pandemic. Whilst previous studies have primarily compared PsA PROMs with clinician-assessed scores (e.g. PASDAS), we compare PsA PROMs with clinicians' overall assessment of disease activity;this judgement considers PROMs, serology studies and individual patient feedback. Finally, we assess whether patients with PROMs indicating active disease were followed up appropriately. Methods Clinician-assessed scores were collected between 01/01/2019-01/03/ 2020 (''pre-pandemic''). Between 01/12/2020-31/03/2022 (''intrapandemic''), patient data from electronic surveys were analysed in a secure database for calculation of PROMs. These data, alongside blood results and patient comments, informed clinicians' triage decisions. Clinical outcome data were collected from electronic patient records;>=3 months follow-up appointment allocation was the target for patients with active disease (moderate/high disease activity). Data analysis was performed using r (version 4.2.2). Results In our pre-pandemic cohort (n=393), 79.8% of patients were in remission (per DAS28-CRP). Conversely, the intra-pandemic cohort (n=231) showed remission rates of 14.3% (per PSAID12) and 0% (RAPID-3). Indeed, 33.7% (based on PSAID12) vs 75.8% (RAPID-3) had moderate/ high disease activity. These results were validated in a paired cohort (n=38, score recorded in both windows). Disease activity worsened during the pandemic for 63.2% (PSAID12) and 97.4% (RAPID-3) of patients. PSAID-12 correlated positively with RAPID-3 (r=0.52, p<0.001), especially when RAPID-3 >=6.5 (r=0.75, p<0.001). When comparing PROMs with clinicians' assessment of PsA activity in our paired cohort, PSAID12 and RAPID-3 accurately reflected disease status in 70.6% and 58.8% of patients respectively. 3/9 and 9/27 patients with active disease, based on PSAID12 and RAPID-3 respectively, were seen within three months. Conversely, 7/10 patients who clinicians had deemed to have active disease were seen within three months. Conclusion Despite approximately 80% of patients being in pre-pandemic remission, the majority reported active intra-pandemic PsA. Whilst RAPID-3 skewed patients towards active disease, PSAID12 skewed patients towards remission/low disease activity. PSAID-12 and RAPID- 3 have been previously correlated;however, here we suggest that they could be used interchangeably in patients with high disease activity. PSAID-12 was a better predictor of clinicians' assessment of disease activity, although neither PROM correlated well with >=3 months followup appointment allocation. Although RAPID-3 and PSAID12 helped inform clinicians' decisions, neither alone sufficiently reflects patients' disease states. Remote management is practicable, but future studies should validate these findings across a larger cohort and assess the utility of different PROMs across PsA disease activity categories. Furthermore, multivariate analysis is warranted to ascertain which (combination of) variable(s) (e.g., PROMs, serology results, tender/ swollen joint count) best correlates with clinician judgement.
ABSTRACT
In 2023, the Australian and New Zealand Intensive Care Society (ANZICS) Registry run by the Centre for Outcomes and Resources Evaluation (CORE) turns 30 years old. It began with the Adult Patient Database, the Australian and New Zealand Paediatric Intensive Care Registry, and the Critical Care Resources Registry, and it now includes Central Line Associated Bloodstream Infections Registry, the Extra-Corporeal Membrane Oxygenation Database, and the Critical Health Resources Information System. The ANZICS Registry provides comparative case-mix reports, risk-adjusted clinical outcomes, process measures, and quality of care indicators to over 200 intensive care units describing more than 200 000 adult and paediatric admissions annually. The ANZICS CORE outlier management program has been a major contributor to the improved patient outcomes and provided significant cost savings to the healthcare sector. Over 200 peer-reviewed papers have been published using ANZICS Registry data. The ANZICS Registry was a vital source of information during the COVID-19 pandemic. Upcoming developments include reporting of long-term survival and patient-reported outcome and experience measures.
ABSTRACT
BACKGROUND: The Symptoms of Infection with Coronavirus-19 (SIC) is a 30-item patient-reported outcome (PRO) measure scored by body system composites to assess signs/symptoms of coronavirus disease 2019 (COVID-19). In addition to cross-sectional and longitudinal psychometric evaluations, qualitative exit interviews were conducted to support the content validity of the SIC. METHODS: In a cross-sectional study, adults diagnosed with COVID-19 in the United States completed the web-based SIC and additional PRO measures. A subset was invited to participate in phone-based exit interviews. Longitudinal psychometric properties were assessed in ENSEMBLE2, a multinational, randomized, double-blind, placebo-controlled, phase 3 trial of the Ad26.COV2.S COVID-19 vaccine. Psychometric properties evaluated included structure, scoring, reliability, construct validity, discriminating ability, responsiveness, and meaningful change thresholds of SIC items and composite scores. RESULTS: In the cross-sectional study, 152 participants completed the SIC (mean age, 51.0 ± 18.6 years) and 20 completed follow-up interviews. Fatigue (77.6%), feeling unwell (65.8%), and cough (60.5%) were symptoms most frequently reported. SIC inter-item correlations were all positive and mostly moderate (r ≥ 0.3) and statistically significant. SIC items and Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29) scores correlated as hypothesized (all r ≥ 0.32). Internal consistency reliabilities of all SIC composite scores were satisfactory (Cronbach's alpha, 0.69-0.91). SIC composite scores correlated moderately (r = 0.30-0.49) to strongly (r ≥ 0.50) with PROMIS-29 scores and Patient Global Impression of Severity (PGIS) ratings (all P < 0.01). A variety of signs/symptoms were cited in exit interviews, and participants considered the SIC straightforward, comprehensive, and easy to use. From ENSEMBLE2, 183 participants with laboratory-confirmed moderate to severe/critical COVID-19 were included (51.5 ± 14.8 years). Strong test-retest reliabilities were observed for most SIC composite scores (intraclass correlations ≥ 0.60). Statistically significant differences across PGIS severity levels were found for all but 1 composite score, supporting known-groups validity. All SIC composite scores demonstrated responsiveness based on changes in PGIS. CONCLUSIONS: The psychometric evaluations provided strong evidence for the reliability and validity of the SIC for measuring COVID-19 symptoms, supporting its use in vaccine and treatment trials. In exit interviews, participants described a broad range of signs/symptoms consistent with previous research, further supporting the content validity and format of the SIC.
Coronavirus disease 2019 (COVID-19) is a serious disease that continues to evolve globally. Researchers developed the Symptoms of Infection with Coronavirus-19 (SIC), a 30-item questionnaire designed for patients to report signs and symptoms of COVID-19. In this study, the researchers formally analyzed how well the SIC measures the patient experience with COVID-19, using survey and clinical trial data as well as telephone interviews. Adults with COVID-19 and at least 2 bothersome symptoms completed the web-based survey, and some of these individuals also participated in in-depth interviews. Participants in a clinical trial for a COVID-19 vaccine also completed the SIC measure. The SIC was compared with other commonly used questionnaires that evaluate patient experience. The most commonly reported symptoms of COVID-19 were fatigue, feeling unwell, cough, weakness, and headache. The items for individual symptoms (e.g., "cough") and combined scores for body systems (e.g., "respiratory system") performed well in statistical analyses. Participants found the SIC to be straightforward, comprehensive, and easy to use. The SIC may prove useful in the future for vaccine and treatment trials for COVID-19.
Subject(s)
Ad26COVS1 , COVID-19 , Adult , Humans , Middle Aged , Aged , Cross-Sectional Studies , Psychometrics/methods , Reproducibility of Results , COVID-19 Vaccines , Surveys and QuestionnairesABSTRACT
Introduction: Conservative estimates suggest that the cost of poor medication adherence (MA) to healthcare systems in the UK is close to 800Mn annually, however figures may be as high as 920Mn to 224Bn across larger parts of Europe and the US.(1) This may be attributed to the relationship between poor MA and an increased risk of hospital admission.(2) Often, cases are preventable and hence present an opportunity for avoidable costs if appropriately identified and managed, such as in the case of early readmissions (admissions occurring within 30 days of discharge). However, despite the association between MA and admissions, to date no predictive model has been developed that integrates a holistic Patient-Reported Outcome Measure (PROM) of MA. This study evaluated one such PROM, known as SPUR, as a predictor of general admission and early readmission in patients living with Type 2 Diabetes (T2D). Aim(s): This study sought to develop a predictive model of early readmission and general admission risk using the SPUR tool as a PROM of MA in patients living with T2D. Method(s): Using an observational study design, 6-month retrospective and prospective patient monitoring were conducted to assess the number of admissions and early readmissions during the observational period. Outcomes were reported as binary and count variables. Patients were previously recruited from a large London NHS Trust as part of a cross-sectional study to validate SPUR. Covariates of interest included: age, ethnicity, gender, education level, income, the number of medicines and medical conditions, and Covid-19 diagnoses. A Poisson or negative binomial model was employed for count outcomes, with the exponentiated coefficient indicating incident ratios (IR) [95% CI]. For binary outcomes (Coefficient, [95% CI]), a logistic regression model was developed. Result(s): Data were available for 200 patients. The modal age range was 70-79 years (n=74/200, 37.0%). Most participants were GCSE educated (42.5%), white (76.0%), and over a third female (36.0%) identified as female. For general admission risk as a count variable, a higher SPUR score (increased adherence) was significantly associated with a lower number of admissions (IR = 0.98, [0.96, 1.00]). Other factors associated with an increased risk of admission included: age >=80 years (IR = 5.18, [1.01, 26.55]), GCSE education (IR = 2.11, [1.15 - 3.87]), number of medical conditions (IR = 1.07, [1.01, 1.13]), and a positive Covid- 19 diagnosis during follow-up (IR = 1.83, [1.11, 3.02]). SPUR remained significant when modelled as a binary variable (-0.048, [-0.094, -0.003]). For early readmission, only the SPUR score was significantly predictive of the outcome as a binary variable (-0.051, [-0.094, -0.007]), indicating that those with a higher SPUR score were at less risk of an early readmission. Conclusion(s): The study successfully developed a predictive model for both general admission and early readmissions in patients living with T2D using the SPUR tool and several covariates of clinical relevance. However, a small sample size is noted as a limitation. Future work may look to integrate SPUR as a holistic PROM of MA to support the development of tailored interventions to reduce patients' risk of admission.
ABSTRACT
Introduction: Chronic Obstructive Pulmonary Disease (COPD) is a respiratory condition characterised by a progressive and irreversible decline in lung function. COPD prevalence increased by 44.2% between 1990 and 2015, resulting in 3.2 million deaths globally in 2015.(1) Inhalers are an essential treatment for people living with COPD. However, poor adherence to inhaled medicines is associated with worsening symptom severity, increased hospitalisation, comorbidity, and mortality.(2) Patient Reported Outcome Measures (PROMs) have been designed to examine the factors that contribute to poor medication adherence (MA). To date, none provide a holistic assessment that could be used to design tailored MA interventions. This study sought to address this by evaluating a novel PROM that holistically assesses four key factors of MA referred to as Social, Psychological, Usage, and Rationale, in short, SPUR. Aim(s): To explore the validity of the SPUR model as a holistic PROM of MA in patients living with COPD Methods: This cross-sectional study surveyed adults living with COPD from a large London NHS Trust between January and December 2021. Participants were eligible if they had >=1 inhaler prescribed for a minimum of 6 months prior to the study and were able to read and write in English. Participants who were too clinically unwell to independently complete the survey were excluded, which often included those with a Covid-19 diagnoses. Convenience sampling was used to recruit participants from in-patient wards and the acute admissions unit prior to administration of face-to-face surveys. Survey questions related to socio-clinical data, the SPUR tool, and a previously validated PROM known as the Inhaler Adherence Scale (IAS) that was included as a comparator. The Medication Possession Ratio (MPR), a measure of a patient's pill count in a given time period, was used as an objective comparator of MA. MPR, IAS, and SPUR scores were compared using Spearman's rank correlation coefficient (p). Symptom severity was examined using the COPD Assessment Test (CAT), with a Chi-square analysis (chi2) conducted to explore the relationship between the CAT and SPUR. Result(s): From 123 patients approached for this study, 100 participated providing a response rate of 81.3%. The modal age range was 70-79 years. Participants were predominantly white (90%), educated to GCSE level (51%), and identified as female (52%). Over two thirds (67%) were ex-smokers. SPUR was significantly (p<0.01) and positively correlated with IAS (p=0.65) and MPR (p=0.30), demonstrating that SPUR is a valid measure of MA. Chi-Square analysis identified a significant (p<0.01) relationship between CAT and SPUR scores (chi2=8.570);hence SPUR could reliably identify patients with poorer adherence, which was associated with worsening symptom severity. Conclusion(s): A study strength includes the implementation of an objective measure (MPR) and PROM (IAS) as part of validating SPUR. However, the results should be treated cautiously given the small sample size, which was limited due to Covid-19. This study provides early evidence of SPUR as a reliable holistic measure of MA with significant associations to COPD symptom severity, which could be applied in clinical practice to prospectively address patient outcomes linked to poor MA.
ABSTRACT
Background: People with HIV (PWH) have a higher risk of COVID-19 morbidity and mortality. SARS-CoV-2 vaccination is highly effective in preventing severe COVID-19, although medical mistrust may contribute to vaccine hesitancy among PWH. Method(s): PWH from 8 sites in the Centers for AIDS Research Network of Integrated Clinical Systems (CNICS) completed the clinical assessment of patient-reported outcomes including a vaccine hesitancy instrument as part of routine care from 2/21-4/22. Participants were defined as vaccine hesitant if they had not yet received the SARS-CoV-2 vaccine and would probably or definitely not receive it. We assessed factors associated with SARS-CoV-2 vaccine hesitancy using logistic regression, and adjusted for demographics, unsuppressed viral load >200 copies/mL, calendar month and time on ART. Result(s): Overall, 3,278 PWH with a median age of 55 responded;19% were female sex at birth;93% were virally suppressed. At the time of survey, 27% reported they had not received the SARS-CoV-2 vaccine, of whom 27% (n=242;7% overall) reported vaccine hesitancy. Of these 242, 82% expressed concerns about vaccine efficacy;86% about side effects;38% reported distrust of healthcare, 53% reported concerns about vaccine contents (i.e. trackers, live virus);and 24% did not perceive risk from COVID-19. Factors associated with vaccine hesitancy included female sex (Adjusted Odds Ratio [AOR] 2.0;95% Confidence Interval (CI): 1.5-2.8;Table), Black vs. White race (AOR 1.8;95% CI: 1.3-2.5), age< 30 years (AOR 2.8;95% CI: 1.5-5.2), South/Midwest vs. Northeast region (AOR 1.7;95% CI: 1.2-2.4), years on ART (0.8;0.7-0.9) and unsuppressed viral load (AOR 2.2;95% CI: 1.4-3.5). Hesitancy decreased over time (AOR 0.9 per month;95% CI: 0.8-0.9). Vaccine side effects were the primary concern for women;vaccine contents for Black PWH and those who were unsuppressed;and lack of perceived COVID-19 risk for youth. Conclusion(s): Vaccine hesitancy was reported by approximately 7% of a U.S. multi-site cohort of PWH, and it was more prevalent among Black PWH, women, youth, those with unsuppressed viral loads, and residents of the South/ Midwest. The association between virologic non-suppression and vaccine hesitancy highlights the intertwined challenge of medical mistrust for both HIV and COVID-19. Although vaccine hesitancy decreased over time, renewed efforts will be needed to address concerns of PWH about the COVID-19 vaccine, given the ongoing need for revaccination with the evolution of the pandemic.