'Caring beyond capacity' during the COVID-19 pandemic: resilience and family carers of people with dementia from the IDEAL cohort

Family carers of people with dementia have reported increased caring demands during the COVID-19 pandemic. The aim of this qualitative study is to explore seven family carers' accounts of dementia caregiving one year into the COVID-19 pandemic in England in relation to carer resilience. Themes describe the complex challenges of caring during the pandemic, with interviewees burned out and 'caring beyond capacity' due to unmet needs within the caring role, therein highlighting the limitations of building individual resilience only. Timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.

Living with dementia during the COVID-19 pandemic: insights into identity from the IDEAL cohort

The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE (Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life Under Physical Distancing on People with Dementia and Carers) component of the IDEAL (Improving the Experience of Dementia and Enhancing Active Life) cohort study, the overall aim of this subtle realist qualitative study was to explore the perspectives of people with dementia on living through the COVID-19 pandemic within the context of the 'post-vaccine' period and the national lockdowns in England and Wales;and to determine perceived challenges to and facilitators of 'living well' during the COVID-19 pandemic and beyond as restrictions were eased. In addition, the study findings are considered in relation to understandings of identity in dementia which the broader accounts of living through the pandemic have highlighted. Seven people with mild-to-moderate dementia were interviewed and themes were derived using framework analysis. Themes suggest interviewees' stoic acceptance of the pandemic and social restrictions but also fear of decline related to the temporality of their condition as well as loss of self-confidence to re-engage with the world. Interviewees managed threats to social identity by striving to maintain social and emotional connections, where the importance of a shared, social identity, particularly for people with young-onset dementia, was also apparent. Unlike in previous studies during the pandemic, the relevance of occupation for identity was observed, where maintaining previous or new activities or occupations was important to facilitate identity as well as to keep a sense of purpose. Therefore, as well as supporting people with dementia as the pandemic eases, future research into occupation and identity in dementia is of potential value.

Effects of the COVID-19 Pandemic on Caregivers of Young Children with Sickle Cell Disease Enrolled in the Engage-HU Trial

Background: Hydroxyurea (HU) is the primary medication used to prevent the significant medical and neurologic morbidities of pediatric sickle cell disease (SCD;HbSS or HbSB0 thalassemia). Despite the benefits of HU, it remains under-utilized likely due to lack of clinician knowledge/training and negative caregiver perceptions. Thus, we developed the Engage-HU randomized controlled trial (NCT03442114) as a novel approach to address HU utilization barriers. Engage-HU is designed to assess how clinicians can engage caregivers in a shared discussion that considers their values, preferences, and scientific evidence about HU. The COVID-19 pandemic has resulted in significant changes to healthcare delivery for children with SCD, as they are at increased risk of severe illness from COVID-19 infection. Given their risk status, it was recommended that patients with SCD complete telehealth visits when possible. Some families also chose to delay care because they feared their child would get infected at hospitals/healthcare clinics that care for COVID-19 positive patients. Since the lives of all families enrolled in the Engage-HU trial have been affected to some extent, we incorporated measures to capture the impact of the COVID-19 pandemic and the usability of telemedicine implementation and services. Methods: Engage-HU is a randomized control trial comparing two dissemination methods for clinicians to facilitate shared decision-making with caregivers of young children with SCD. Study outcomes include caregiver confidence in decision-making and perceptions of experiencing shared decision-making as well as HU uptake and child health outcomes. Eligible children are 0 to 5 years, candidates for HU, and their caregiver has not decided about HU in the past 3 months. The trial is being conducted at 9 sites in the United States and uses a unidirectional crossover design. The primary endpoints are caregiver decisional uncertainty and caregiver perception of shared decision-making measured using validated tools. Data will be analyzed using the intent-to-treat principle, and all participants will remain in the arm to which they were randomized. A multiple group comparison analysis will be performed to assess significant response variable differences by group randomization. The Engage-HU study aims to recruit 174 caregivers who are considering initiating HU. The trial is being conducted at 9 sites in the United States. Data collection is ongoing, and 160 caregiver-participants have been enrolled to date. Since May 2020, caregiver-participants have completed the COVID-19 Exposure and Family Impact Scales (CEFIS), which contain 2 subscales (exposure to potentially traumatic aspects of the pandemic, impact on families), and the COVID-19 telemedicine use survey during a study visit. Results: Currently, 8 of the 9 sites have collected data from 48 caregivers (93.8% mothers), most of whom (93.8%) identify as African American/Black (see Figure 1). Correlations indicated that older caregivers experienced greater exposure (Mean = 7.0, SD = 4.1, range = 1-19) to potentially traumatic aspects of the pandemic (r =.31, p =.04). Distress related to COVID-19 varied widely across the sample, for both caregivers (Mean = 5.9, SD = 2.9, range = 1-10) and children (Mean = 4.1, SD = 3.4, range = 1-10). Scores on the telemedicine usability survey were generally high, indicating that caregivers are happy with the quality of care delivered via telehealth. However, caregivers (r =.30, p =.09) and children (r =.32, p =.07) experiencing more pandemic-related distress reported less satisfaction with telehealth. Conclusion: Although Engage-HU has resumed research operations, recruitment has not reached pre-pandemic targets, as fewer eligible patients are scheduled for routine care visits at SCD clinics. Our preliminary analyses suggest a significant continued impact of the pandemic on families and general satisfaction with the quality of healthcare delivered via telemedicine. These findings indicate that targeted screenings to identify and intervene for those who emonstrate more COVID-19 pandemic-related distress are needed. [Formula presented] Disclosures: Quinn: Forma Therapeutics: Consultancy;Aruvant: Research Funding;Novo Nordisk: Consultancy;Emmaus Medical: Research Funding. Yates: Agios Pharmaceuticals: Current Employment. Badawy: Sanofi Genzyme: Consultancy;Vertex Pharmaceuticals Inc: Consultancy;Bluebird Bio Inc: Consultancy. Thompson: bluebird bio, Inc.: Consultancy, Research Funding;Baxalta: Research Funding;Biomarin: Research Funding;Celgene/BMS: Consultancy, Research Funding;CRISPR Therapeutics: Research Funding;Vertex: Research Funding;Editas: Research Funding;Graphite Bio: Research Funding;Novartis: Research Funding;Agios: Consultancy;Beam: Consultancy;Global Blood Therapeutics: Current equity holder in publicly-traded company. Smith-Whitley: Global Blood Therapeutics: Current Employment. King: National Cancer Institute: Research Funding;National Heart, Lung, and Blood Institute: Research Funding;Health Resources and Services Administration: Research Funding;Global Blood Therapeutics: Research Funding. Meier: CVS Caremark: Consultancy;Forma Therapeutic: Membership on an entity's Board of Directors or advisory committees;NovoNordisk: Membership on an entity's Board of Directors or advisory committees;Novartis,: Other: Data Safety Monitoring Board membership;NHLBI: Other: Data Safety Monitoring Board membership;Global Blood Therapeutics: Other: Steering Committee membership, grant funding;CDC,: Other: grant funding;Indiana Department of Health: Other: grant funding. Tubman: Global Blood Therapeutics: Consultancy, Research Funding;Novartis Pharmaceuticals: Honoraria, Research Funding;Forma Pharmaceuticals: Consultancy;Perkin Elmer: Honoraria. Crosby: Forma Therapeutics: Honoraria;PCORI: Research Funding;HRSA: Research Funding;Global Blood Therapeutics Panel: Honoraria;Children's Hospital of Philadelphia: Honoraria;Professional Resource Exchange: Patents & Royalties: $30-$60 every other year;SCDAA: Honoraria;NHLBI: Other: Payment for review of LRP Proposals, Research Funding. OffLabel Disclosure: Hydroxyurea has been FDA approved for the treatment of sickle cell disease for patients ages 2 years and above but NHLBI and ASH Guidelines recommend it be offered to children as young as age 9 months.

Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort

Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial 'lockdown' period in May and June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular 'just checking' phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to 'live well' with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively. Copyright © The Author(s), 2021. Published by Cambridge University Press.

The COVID-19 impact on symptomatic breast cancer referrals and diagnosis

Aims To determine the impact of the COVID-19 pandemic on the number of new patients attending a symptomatic breast unit and number of patients diagnosed with primary breast cancer. Methods Anonymised data of new attendances and breast cancer diagnoses between February and July 2020 were analysed and compared with data from 2019 and 2018. Results The average number of new patient attendances in February-July 2020 was 2,111 vs 3,008 during the same time period in 2018 and 2019 (30% less). The average number of breast cancers diagnosed in April/May 2020 was 36 vs 73 in April/May 2019 and 2018 (50% less). The number of breast cancers diagnosed in July 2020 was 60 vs 35 in July 2019 and 2018 (43% greater). Conclusion Less breast cancers diagnosed at the height of our nationwide COVID-19 lockdown and higher numbers diagnosed in July 2020 suggests a delay in presentation of these women to their GPs during lockdown.

Leveraging Project Echo Telementoring to Improve Sickle Cell Disease Care in the Midwest: Expanding Provider Education during a Pandemic

Introduction Approximately 15,000 individuals in the Midwest live with sickle cell disease (SCD), a lifelong, painful disorder with complications and comorbidities. Providers self-report limited knowledge and confidence in treating patients with SCD, leading to limited access to providers knowledgeable about evidence-based management and treatment guidelines and therefore poor health outcomes for patients. Sickle Treatment and Outcomes Research in the Midwest (STORM) is a regional sickle cell network, established to improve outcomes for individuals with SCD living in Indiana, Illinois, Michigan, Minnesota, North Dakota, Ohio, South Dakota and Wisconsin. One goal of STORM is to increase provider knowledge about evidence-based management of SCD. STORM TeleECHO, a replication of the Project ECHO (Extension for Community Healthcare Outcomes) telementoring model, was launched in March 2016 as an innovative, lifespan approach to provider education in the Midwest. In March 2020, in response to the COVID-19 public health pandemic, the STORM coordinating team quickly pivoted to host additional COVID-19 and SCD focused ECHO sessions. Methods STORM TeleECHO virtual clinics include didactic presentations with a curriculum based on the National Heart Lung and Blood Institute Evidence-Based Management of Sickle Cell Disease guidelines, as well as a de-identified case discussion presented by providers seeking feedback on the management of challenging clinical scenarios. Other additional medical and psychosocial issues have also been presented. Participants join the monthly hour-long sessions using Zoom© or telephone. COVID-19 and SCD sessions followed the same format and topics focused on emerging medical and psychosocial pandemic issues, such as: serology, multi-system inflammatory syndrome in children, the COVID and SCD surveillance registry, blood safety and transfusion practices, telemedicine, back to school issues, mental health, and Sickle Cell Disease Association of America patient and provider advisories. These sessions also provided an open forum for this hematology/primary care provider community of practice to share rapidly changing clinical practices and patient resources. Results Since March 2016, 58 sessions have been held with over 175 unique attendees. Evaluation data shows 100% of providers will continue participating and would recommend STORM TeleECHO to a colleague. Over 80% reported learning best practice guidelines for SCD;developing clinical expertise;and applying knowledge into practice. Data analysis has shown a statistically significant increase in provider confidence to identify eligible candidates and prescribing hydroxyurea. STORM has awarded over 750 CME credits (since 2016), over 300 MOC Part II from the American Board of Pediatrics and the American Board of Internal Medicine (since 2017) and 70 CNE credits (since 2019). Since March 2020, the 11 special COVID-19 sessions have averaged 42 attendees per session- nearly a 150% increase compared to the standing ECHO sessions in previous years (Table 1). Over 115 unique providers have attended at least one COVID-19 session, with 61 participants being new to STORM TeleECHO. Participants have cumulatively attended an average of 4 COVID-19 sessions and represented 17 states and Canada. On average, 93% of respondents rated the COVID-19 STORM TeleECHO sessions as “very good” or “excellent”. Discussion STORM TeleECHO has been instrumental in increasing knowledge and comfort of providers caring for patients with SCD. Data shows that STORM TeleECHO has the potential to improve outcomes and decrease health disparities in this underserved and medically vulnerable population. Moreover, STORM COVID-19 and SCD TeleECHO session participants have been highly satisfied with this educational forum for addressing emerging issues during the public health emergency. Our program quickly and successfully leveraged the existing STORM TeleECHO framework to expand educational forums for this community of practice. The continued increase in participants sustained throug out the COVID-19 ECHO's has demonstrated the need and interest for this educational forum to share practice changes, new clinical protocols, patient education and other resources. While the regular STORM TeleECHO sessions will continue, there are also plans to continue the additional COVID-ECHO sessions for the foreseeable future. [Formula presented] Disclosures: No relevant conflicts of interest to declare.

Using COVID-19 to teach sustainability futures thinking

Students of Sustainability Science have a unique lens through which to engage current events and envision a sustainable future that may arise from current and future hardships. In our undergraduate Sustainability Science courses, students learn and practice key sustainability competencies (Wiek et al. in Sustain Sci 6:203–218, 2011) including systems thinking, strategic thinking, and futures thinking. In response to COVID-19, in the latter half of the Spring 2020 semester, we re-tooled our courses to help our students (1) apply competencies to understand Coupled Human and Natural Systems drivers behind COVID-19 spread as well as individual, societal, and natural responses, and (2) to envision how our future can be deliberately different if people choose to push past previously accepted paradigms as we emerge from the immediate crisis. In this chapter, we first overview how our curriculum lends itself to a deep systems understanding of COVID-19 by providing specific pedagogical examples of how we have utilized this pandemic to explain key sustainability theories, concepts, and competencies. Second, we offer a novel qualitative analysis of future sustainability-focused visions from student assignments from two courses that occurred between March and May 2020. Together these two lines of evidence provide information on how today’s college students envision and plan to shape our shared future. © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021.