Patient knowledge, personal experience, and impact of the first wave of the COVD-19 pandemic in an Irish oncology cohort.

BACKGROUND: Oncology patients have had to make many changes to minimise their exposure to COVID-19, causing stress. Despite education, some patients still do not recognise potential COVID symptoms. AIMS: We assessed patient knowledge of COVID, and its impact on their behaviours, concerns, and healthcare experience. METHODS: A 16-page questionnaire was distributed to 120 oncology patients attending the day unit of a tertiary Irish cancer centre for systemic anti-cancer therapy (May/June 2020). The Irish 7-day COVID incidence during this period ranged from 2 to 11 cases/100,000 people. RESULTS: One hundred and one responses were received, 1% had tested positive for COVID, and 31% had undergone testing. Participant insight into their knowledge about COVID and their own behaviour was limited in some cases. Seventy-five percent reported total compliance with restrictions, but many were not fully compliant. Self-reported confidence in knowledge was high, but did not predict demonstrated knowledge. Sixty percent did not recognise two or more symptoms; 40% did not self-identify as high-risk. Patients reported more health-related worry (72%), loneliness (51%), and lower mood (42%) since the pandemic began. Financial toxicity worsened, with increased financial worry (78%), reductions in household income (40%), and increased costs due to lockdown (62%). Use of facemasks introduced new communications barriers for 67% of those with hearing loss. CONCLUSIONS: Despite self-reported confidence in knowledge, some patient's recognition of COVID symptoms and the preventative strategies they should use are not optimal, highlighting the need for further education in this regard. COVID has been a significant stressor for patients and more practical, financial, and psychological supports are needed.

Applicability of information and communication technologies in a secondary hospital pelvic floor service.

Information and Communication Technologies increase healthcare education. Since the COVID-19 pandemic outbreak, they have been gaining importance. Our aim was to assess the effects of a web-based questionnaire used in a pelvic floor consultation. We performed a prospective intervention study analysing the use of a web-based questionnaire prior to a first appointment. Fifty-two women used the questionnaire and 52 did not. All patients filled in a paper-based survey relating to satisfaction and pelvic floor knowledge after the appointment. Women in the intervention group showed better knowledge. They had 11% more correct answers for organ prolapse definition [CI 95% (-0.30 to 0.07)], 25% more correct answers for incontinence definition [CI 95% (-0.41 to -0.08)] and 23% better incontinence classification [CI 95% (-0.34 to 0.09]. More patients in the web-questionnaire group started primary therapy in the first consultation (38% versus 16%). Measurements of the total mean time in the consultation room revealed no statistically significant differences [19.36 (SD 4.96) and 21.19 (SD 4.62) minutes, respectively; p = .05] and satisfaction levels were similar.After using our web-based questionnaire, the time for medical histories reduced and patient knowledge increased without changing satisfaction levels. Impact statementWeb-based questionnaires (WBQ) and information web links may help to reduce time of history taking while time for physical examination, counselling and treatment discussion increases. Also, patient knowledge improves.What is already known on this subject? There are reviews showing how Information and Communication Technologies (ICT) can improve health quality and sanitary education. Since the Covid-19 pandemic started, ICT use has been accelerated and traineeship and learning has been enforced. However, there is not extensive research on its use in gynaecological consultations.What do the results of this study add? We have proved that the use of a WBQ and information web links before face-to-face first visit in a pelvic floor service improves patient knowledge. We have also worked to provide scientific evidence to an ICT tool.What are the implications of these findings for clinical practice and/or further research? The most important implications for clinical practice are the improvement of patient-provider communication, the time reduction for history taking in contrast to time increase for physical examination, counselling and treatment discussion.Apart from that, WBQ may help to measure qualitative information, because it is registered and can be used as patient reported outcomes (PRO) to increase quality of care. Further research should focus on other benefits of WBQ such as achieving better patient satisfaction.

Online KidClot education for patients and families initiating warfarin therapy: The eKITE study.

Anticoagulation with Vitamin K antagonists (VKA) has always posed challenges in terms of monitoring requirements. These challenges were further exacerbated in the setting of the COVID-19 pandemic, with limited access to and/or avoidance of laboratory testing. The importance of utilizing point of care (POC) health technology for individualized patient management is salient. The foundation of effective home INR monitoring is establishing patient knowledge about their therapy and INR testing proficiency. The eKITE series was developed to support patients in establishing foundational knowledge required for VKA (warfarin) management and INR monitoring. The primary objectives were to evaluate eKITE, a patient-oriented innovative online education program for warfarin therapy, participant learning stress, and patient preference for online learning. This multi-center prospective study provided patients access to warfarin online education. Participants were required to complete written quizzes assessing warfarin knowledge of key concepts proficiency and identifying knowledge deficits. Patient preference, evaluating calm (lack of anxiety) while learning, and an INR on a home meter was completed. Participants performed INR tests at home and reported INRs by telephone. The analysis included 144 children and caregivers enrolled at five US and CDN sites. Most indications for anticoagulation were cardiac (congenital or acquired heart disease) with varied INR target ranges. Mean knowledge scores for warfarin and INR self-testing modules were 97%, with low anxiety with TTR of 84%. Patient preferred online learning. eKITE is an effective teaching modality for warfarin/home INR monitoring with safe INR testing and warfarin management that is appropriate for pediatrics and adults alike. PROLOGUE: The whir in the hallways is deafening. Lights bright, alarms are ringing in a chorus of unsynchronized beeps and screeches. It has been more than a week since I have slept. Snuggled beside me is my precious child, whining and equally irritated with the asynchronous symphony, further compounded by anxiety, procedures, and pain. The sun has broken. The staff smiles are welcoming and incessant, as one after one, they approach hurried, urgent, assiduous, their need to coach me for our upcoming departure to the warmth of home. Each provides essential information that I will require to keep my child, my treasure, safe and healthy. Yet, my eyes are heavy, blurred, and my brain foggy, trapped in a dark heavy cloud. How am I to follow? Comprehend? and retain anything? As they instruct, my precious child yearns for loving arms, compassion and love, whining, crying in disquiet. Overwhelmed does not adequately describe my ineffable exhaustion. Amidst this, how am I to learn about warfarin? Such a challenging medication, with so much to know. Concentrate, I tell myself, focus; now is my only opportunity to learn. I must be alert. It seems to be nonsensical.

Patient understanding regarding opioid use in an orthopaedic trauma surgery population: a survey study.

BACKGROUND: Prior studies have assessed provider knowledge and factors associated with opioid misuse; similar studies evaluating patient knowledge are lacking. The purpose of this study was to assess the degree of understanding regarding opioid use in orthopaedic trauma patients. We also sought to determine the demographic factors and clinical and personal experiences associated with level of understanding. METHODS: One hundred and sixty-six adult orthopaedic trauma surgery patients across two clinical sites of an academic institution participated in an internet-based survey (2352 invited, 7.1% response rate). Demographic, clinical, and personal experience variables, as well as perceptions surrounding opioid use were collected. Relationships between patient characteristics and opioid perceptions were identified using univariate and multivariable logistic regressions. Alpha = 0.05. RESULTS: Excellent recognition (> 85% correct) of common opioids, side effects, withdrawal symptoms, and disposal methods was demonstrated by 29%, 10%, 30%, and 2.4% of patients; poor recognition (< 55%) by 11%, 56%, 33%, and 52% of patients, respectively. Compared with white patients, non-white patients had 7.8 times greater odds (95% confidence interval [CI] 1.9-31) of perceiving addiction discrepancy (p = 0.004). Employed patients with higher education levels were less likely to have excellent understanding of side effects (adjusted odds ratio [aOR] 0.06, 95% CI 0.006-0.56; p = 0.01) and to understand that dependence can occur within 2 weeks (aOR 0.28, 95% CI 0.09-0.86; p = 0.03) than unemployed patients. Patients in the second least disadvantaged ADI quartile were more knowledgeable about side effects (aOR 8.8, 95% CI 1.7-46) and withdrawal symptoms (aOR 2.7, 95% CI 1.0-7.2; p = 0.046) than those in the least disadvantaged quartile. Patients who knew someone who was dependent or overdosed on opioids were less likely to perceive addiction discrepancy (aOR 0.24, 95% CI 0.07-0.76; p = 0.02) as well as more likely to have excellent knowledge of withdrawal symptoms (aOR 2.6, 95% CI 1.1-6.5, p = 0.03) and to understand that dependence can develop within 2 weeks (aOR 3.8, 95% CI 1.5-9.8, p = 0.005). CONCLUSIONS: Level of understanding regarding opioid use is low among orthopaedic trauma surgery patients. Clinical and personal experiences with opioids, in addition to demographics, should be emphasized in the clinical history.

The contested meaning of "long COVID" - Patients, doctors, and the politics of subjective evidence.

In our article, we reconstruct how the patient-made term "long COVID" was able to become a widely accepted concept in public discourses. While the condition was initially invisible to the public eye, we show how the mobilization of subjective evidence online, i.e., the dissemination of reports on the different experiences of lasting symptoms, was able to transform the condition into a crucial feature of the coronavirus pandemic. We explore how stakeholders used the term "long COVID" in online media and in other channels to create their illness and group identity, but also to demarcate the personal experience and experiential knowledge of long COVID from that of other sources. Our exploratory study addresses two questions. Firstly, how the mobilization of subjective evidence leads to the recognition of long COVID and the development of treatment interventions in medicine; and secondly, what distinguishes these developments from other examples of subjective evidence mobilization. We argue that the long COVID movement was able to fill crucial knowledge gaps in the pandemic discourses, making long COVID a legitimate concern of official measures to counter the pandemic. By first showing how illness experiences were gathered that defied official classifications of COVID-19, we show how patients made the "long COVID" term. Then we compare the clinical and social identity of long COVID to that of chronic fatigue syndrome (ME/CFS), before we examine the social and epistemic processes at work in the digital and medial discourses that have transformed how the pandemic is perceived through the lens of long COVID. Building on this, we finally demonstrate how the alignment of medical professionals as patients with the movement has challenged the normative role of clinical evidence, leading to new forms of medical action to tackle the pandemic.

Pre-Appointment Nurse Navigation: Patient-Centered Findings From a Survey of Patients With Breast Cancer.

BACKGROUND: Research indicates that nurse navigators can play key roles in promoting empowerment for patients with cancer through advocacy, educational support, resource navigation, and psychosocial care. OBJECTIVES: This study attempted to elucidate the efficacy of nurse navigation in patient knowledge, care coordination, and well-being before a breast oncology appointment. METHODS: Staff provided a nine-question survey to 50 newly referred patients before their initial appointment. After survey completion, patients had the option to participate in an open-ended interview about their experience. FINDINGS: A greater proportion of patients with initial nurse navigation than those without felt informed before their appointment and thought that their care was effectively coordinated. Although some patients without nurse navigation experienced delays and confusion in scheduling their appointment, no patients with nurse navigators reported such issues.