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OBJECTIVE: To explore the experiences of a virtual group therapy programme for children with Osteogenesis Imperfecta (OI) who were unable to access face to face therapy due to a global pandemic. In a regional OI service up to 3 face to face 6-week therapy groups are offered for children during summer school holidays. Throughout the Covid-19 pandemic, OI children were at risk of deconditioning due to government restrictions in school attendance, exercise and socialisation. An alternative means of delivering therapy was required. METHOD(S): 30 families with school age children were invited to attend a virtual therapy group. Following initial interest from 21 children, 14 (age range 4-14 years) participated in a 5 week therapy group. Children were split into 3 age groups (4-7/8-12/13-14). Weekly 75 minute sessions comprised functional gross and fine motor activities. Educational elements with opportunities to explore thoughts and feelings were included. Each group were set a challenge to compete a virtual race from Bristol to Lands' End, recording their distance (walking, wheeling, cycling) throughout the week. Feedback was collected from participants and parents. RESULT(S): Feedback was received from 12/14 of attendees and parents and 4/7 who did not attend. Reasons for non-attendance included anxiety around video calls, other commitments and injuries. Of those that attended 100% (n=12) enjoyed the group and reported increased activity levels. Scavenger Hunt was cited as the favourite activity. 16.6% (n=2) children reported discussion on personal feelings uncomfortable. 16.6% (n=2) reported exercises were hard. 100% (n=9) of parents reported no significant difficulties with IT. Parent reported benefits included positive social interaction with other children with OI (66%, n=6), improving routine in preparation for school return (55%, n=5). Challenges for therapy team included identifying appropriate IT platform, choosing activities appropriate for various abilities and virtual instruction. Successes included time efficiency, full inclusion regardless of geographic location, increased activity levels of children with OI in preparation for school return. CONCLUSION(S): A safe, socially distanced method of delivering group therapy during a pandemic was achieved. Virtual therapy can be a useful adjunct, however this should not replace face to face therapy where possible.
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Background/Aims The immune response to SARS-CoV-2 is known to be reduced in the immunocompromised. However, extent to which immunity is affected by immunosuppression in specific disease cohorts remains poorly characterised. Furthermore, implications of the ongoing vaccination booster programme require further study. Individuals with lupus nephritis (LN) require prolonged high-dose immunosuppression in order to maintain disease control, rendering them important to study in this context. We evaluated SARS-CoV-2 nucleocapsid and spike antibody response in this cohort during the Spring/Summer 2022 booster vaccine campaign. Nucleocapsid antibody indicates previous infection whilst spike antibody indicates previous infection and/or vaccination response. Titre of spike antibody to prevent infection is not known, but presence of antibodies is likely to protect against severe disease. Methods SARS-CoV-2 spike and nucleocapsid antibody were measured in adult patients with LN attending a tertiary centre rheumatology clinic. Data was collected retrospectively on disease, immunosuppression, vaccine status and history of natural exposure. Results 35 cases of LN were investigated, of which LN III, IV and V were predominant biopsy diagnoses. Regarding immunosuppressants, the Eurolupus Cyclophosphamide protocol had been used in the majority of patients to achieve initial control, with 3/35 patients still receiving pulsed courses at data collection. 18/35 were on Mycophenolate Mofetil;a further 13/35 had previously received this. 31/35 took at least 5mg Prednisolone daily;25/35 took Hydroxychloroquine;7/35 took Azathioprine;7/35 had previously been on Methotrexate, 3/35 took Tacrolimus;1/35 took Ciclosporin. Regarding B-cell depleting monoclonal antibody therapy, 13/35 had received Rituximab and 8/35 were receiving Belimumab. Antibody levels were measured between 4 weeks and 13 months after last dose of vaccination;mean duration was 6 months. 11/35 had confirmed COVID-19 infection;a further 8/35 reported a possible history. Of the 35, 32 (91%) had mounted detectable SARS-CoV-2 spike antibody above the bottom 10% of assay detection, indicating some immunity to vaccination or natural exposure. 20 (57%) had detectable nucleocapsid antibody, suggesting natural infection with antibody response. Only 2 (6%) had not mounted any antibody response. Of note, neither were fully vaccinated: one had 1 vaccination with blood test 8 months subsequent;one had 2 vaccinations with blood test 7 months subsequent. The latter was also notably on haemodialysis. All who received 3+ vaccinations had detectable spike antibody responses, as well as 75% of those who had received 2 vaccinations. Conclusion Our study is the first analysis, to our knowledge, of SARS-CoV-2 antibody response in a LN cohort. Whilst neutralising capacity and level of antibody providing protection remains under research, these findings provide at least some reassurance that individuals with LN on immunosuppression are capable of mounting an immune response against SARS-CoV-2. Further work is required to establish extent and duration of protection with serial vaccinations in this cohort.
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Background: The disparity in COVID-19 disease burden between European, Asian, and African countries is notable, with considerably higher morbidity and mortality in many European countries as well as the U.S. Dietary differences between regions could play a role in differential COVID-19 pathogenesis, as Western diets high in fat and sugar have been implicated in enhancing gut damage and pathogenesis during viral infections. Here we investigate the effect of diet on gut immunity and SARS-CoV-2 infection. Method(s): Six pigtail macaques were fed a commercial monkey chow diet, then transitioned to a high fat and sugar chow diet (HFD) for approximately two months prior to infection with Delta strain SARS-CoV-2. Animals were sampled prior to HFD initiation, during HFD administration but prior to infection, and for approximately one month post-infection. HFD was maintained following infection and animals were euthanized at the study conclusion. Result(s): Viral RNA was detected for up to 28 days post-infection in nose swabs, with peak viral load at day 2 at a mean of 8.2x109 copies/mL of swab fluid. Subgenomic RNA (sgRNA, indicating viral replication) decayed more rapidly, with all animals having undetectable sgRNA by day 21, and a lower peak of 2.6x109 copies/mL swab fluid on day 2. Viral RNA load was approximately 3.5 logs greater and sgRNA load approximately 3 logs higher at day 2 than in rhesus macaques infected with WA2020 SARS-CoV-2 and fed standard monkey chow. Mucosal rectal biopsies indicated significantly lower B cell frequencies from baseline to approximately two months following HFD administration (p=0.04, Dunn's), and frequencies had not recovered approximately one month postinfection. GI tract-resident IgG+ B cells were nearly absent at necropsy, with mean frequency 0.03% of total B cells. B cell loss was coupled with modest T cell expansion during HFD administration, though frequencies declined following infection. Furthermore, NK cell frequencies tended to decline from baseline throughout HFD administration, and were further depleted at necropsy one month post-infection. Conclusion(s): SARS-CoV-2 infection can induce lymphopenia, and our sampling of gut mucosal tissue indicates B cell depletion and NK cell loss with a HFD that is further exacerbated by SARS-CoV-2 infection. Excess dietary fat and sugar may disrupt gut barrier integrity and immunity, in turn predisposing the tissue to pathology of viral infection.
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Background: POSNOC is a UK-ANZ multicentre, non-inferiority, randomised trial comparing systemic therapy alone with systemic therapy plus Axillary Treatment (Axillary radiotherapy or ALND) for women with <=2 macrometastases at SNB. The primary outcome is axillary recurrence within 5 years. This paper describes screening, recruitment and compliance data. Method(s): Sites were requested on a monthly basis to upload screening data and provide reasons for nonrecruitment of eligible patients into the trial. Sites entered in the online database whether the patients were compliant with their randomisation allocation. Result(s): The study opened in July 2014 and completed target recruitment of 1900 women (24% of those screened) in July 2021, at 95 sites in the UK and 20 sites in Australia and New Zealand. The reason for non-enrolment was unknown in 1300 women. Of the remaining 4774 women with known reasons, who were screened but not randomised, the most common reasons for non-recruitment were due to either patients (n=2219, 46.5%) or their clinicians (n=782, 16.4%) favouring axillary treatment, or patients (n=490, 10.3%) or their clinicians (n=170, 3.6%) not wishing to have axillary treatment. Over the course of the study, there was an increase in the proportion of patients wanting axillary treatment and declining the trial (Mean % patients declined 2015 - 17.9%, 2021 - 39.1%). Mean number of participants recruited per site per month was 0.24 (SD 0.18) overall, 0.25 (SD 0.19) in the UK, and 0.19(SD 0.15) in ANZ. The mean was < 0.3 in 79 sites and >0.9 in only one site. Recruitment rate remained consistent throughout the study (mean 25.3 per month) except for during the first 6 months of recruitment (5.7) and during the COVID pandemic Apr-Sep 2020 (7.5). Of 89 (4.8%) participants non-compliant with allocation, n=45 (50.6%) received systemic therapy alone and n=44 (49.4%) received systemic therapy plus axillary treatment. There was no fluctuation in the direction of non-compliance during the study duration. There was increasing uptake of axillary radiotherapy to treat the axilla instead of ALND over the course of the study in patients receiving axillary treatment (Number who had ART of all who had axilla treatment2014-2017 - 248/454 (54.6 %);2018-2021 - 315/449 (70.2%)). Conclusion(s): Recruitment and compliance with randomised allocation remained consistent over a seven-year period. POSNOC with in-built radiotherapy QA will provide definitive data on axillary management in patients undergoing mastectomy or BCS with <=2 macrometastases on SNB.
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Background: In the thick of the ongoing global crises of the COVID-19 pandemic, uprisings against anti-Black racism and police brutality, and anti-Asian racism and violence, Black, indigenous, and people of color (BIPOC) adolescent and young adult (AYA) cancer patients may be particularly vulnerable and exploited. Whilst embroiled in sociopolitical complexity, BIPOC AYAs are increasingly called upon to contribute as patient advocates in AYA oncology research and advocacy. Researchers, clinicians, and advocates in AYA oncology must dismantle long-standing racism and create meaningful structural change. The purpose of this study is to derive vital best practices for implementing antiracist patient engagement in AYA oncology research and advocacy that are co-developed by BIPOC AYA cancer patients and oncology professionals. Methods: We utilized a modified Delphi technique with a panel of BIPOC AYA cancer patients (n = 32) to build consensus opinions on professional recommendations from a prior study (Cheung et al., 2021), and to generate antiracist best practices in patient engagement. The Delphi study was comprised of three consecutive and iterative survey rounds over the course of 8 months in 2021;participants were BIPOC AYAs diagnosed with cancer between ages 15-36 years. Results: Results detail best practices for the implementation of antiracist patient engagement across all research activities within the Patient-Centered Outcomes Research Institute's (PCORI) Framework for Patient Engagement. For example, BIPOC AYAs agreed with oncology professionals' high priority recommendation for including BIPOC AYAs at the highest levels of decision making in research topic selection. As such, a best practice is for researchers to ensure that such representatives not only hold BIPOC AYA identity, but also hold direct experience with the particular oncology diagnosis, issue, or other outcome of interest. Additionally, BIPOC AYAs concurred with oncology professionals' high priority for “transparency, honesty, and trust” as a core principle for best practices in patient engagement. They further explained that trustworthy relationships are especially important when collaborating with teens and young adults, who are developmentally just coming into their own. When describing successful experiences of inclusion, participants ranked “build collaborative relationships with BIPOC AYA communities and listen to patients not usually heard” and “recruit a diverse range of BIPOC patients and let them give actual input into the study” as the highest priority best practices. Conclusions: Findings from this study are instructional for AYA oncology researchers, clinicians, and advocates to prevent harmful tokenism and implement genuine antiracist inclusion to advance health equity. Future research should investigate best practices within unique clinical settings.
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Introduction Patients with inflammatory bowel disease (IBD) treated with anti-TNF therapy exhibit attenuated humoral immune responses to vaccination against SARS-CoV-2. The gut microbiota and its functional metabolic output, which are perturbed in IBD, play an important role in shaping host immune responses. We explored whether the gut microbiota and metabolome could explain variation in anti-SARS-CoV-2 vaccination responses in immunosuppressed IBD patients. Methods Faecal and serum samples were prospectively collected from patients with IBD established on infliximab therapy (for >12 weeks) who were undergoing vaccination against SARS-CoV-2. The Roche Elecsys Anti-SARS-CoV-2 spike (S) and nucleocapsid (N) immunoassays were used to measure antibody responses following two doses of either ChAdOx1 nCoV-19 or BNT162b2 vaccine. Seroconversion was defined by a cut-off anti-S concentration of 15 U/ml, which correlated with 20% viral neutralization;anti-S antibody concentration of < 380 U/ml was indicative of poor response to vaccination. Patients with serological evidence of prior SARS-CoV-2 infection were excluded from the analysis. Faecal calprotectin measurement, 16S rRNA gene amplicon sequencing, nuclear magnetic resonance (NMR) spectroscopy and bile acid profiling with ultra-performance liquid chromatography mass spectrometry (UPLC-MS) were performed on faecal samples. Results Forty-five infliximab-treated patients were recruited (median age 40 [range 19-67];32 Crohn's disease, 13 ulcerative colitis;28 with concomitant immunomodulator therapy;six with prior infection). 14 patients (35%) had seroconverted after one dose of vaccine and 37 (95%) seroconverted after two doses. 18 patients (46%) had a poor response after two doses of vaccine. There was no association between faecal calprotectin and vaccine response (p=0.41). No differences between satisfactory and poor vaccine responders were noted in alpha or beta diversity of the gut microbiota. The faecal metabolome of satisfactory responders was enriched in the microbial metabolite trimethylamine (q=0.03). Trends were noted linking the short chain fatty acid butyrate with satisfactory response (P=0.01) and succinate with poor response (P=0.06). No significant differences in primary or secondary bile acids were found to associate with vaccine response. The butyrate-producing genus Roseburia was positively correlated with faecal butyrate abundance (q=0.03). Conclusions Our data suggest an association between gut microbiota function and variable serological response to vaccination against SARS-CoV-2 in immunocompromised patients. Microbial metabolites including trimethylamine and butyrate may be important in mitigating anti-TNF-induced attenuation of the immune response.
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Introduction: Patients with inflammatory bowel disease (IBD) treated with anti-TNF therapy exhibit attenuated humoral immune responses to vaccination against SARS-CoV-2. The gut microbiota and its functional metabolic output, which are perturbed in IBD, play an important role in shaping host immune responses. We explored whether the gut microbiota and metabolome could explain variation in anti-SARS-CoV-2 vaccination responses in immunosuppressed IBD patients. Methods: Faecal and serum samples were prospectively collected from patients with IBD established on infliximab therapy (for >12 weeks) who were undergoing vaccination against SARS-CoV-2. The Roche Elecsys Anti-SARS-CoV-2 spike (S) and nucleocapsid (N) immunoassays were used to measure antibody responses following two doses of either ChAdOx1 nCoV-19 or BNT162b2 vaccine. Seroconversion was defined by a cut-off anti-S concentration of 15 U/ml, which correlated with 20% viral neutralization;anti-S antibody concentration of < 380 U/ml was indicative of poor response to vaccination. Patients with serological evidence of prior SARS-CoV-2 infection were excluded from the analysis. Faecal calprotectin measurement, 16S rRNA gene amplicon sequencing, nuclear magnetic resonance (NMR) spectroscopy and bile acid profiling with ultra-performance liquid chromatography mass spectrometry (UPLC-MS) were performed on faecal samples. Results: Forty-five infliximab-treated patients were recruited (median age 40 [range 19-67];32 Crohn's disease, 13 ulcerative colitis;28 with concomitant immunomodulator therapy;six with prior infection). 14 patients (35%) had seroconverted after one dose of vaccine and 37 (95%) seroconverted after two doses. 18 patients (46%) had a poor response after two doses of vaccine. There was no association between faecal calprotectin and vaccine response (p=0.41). No differences between satisfactory and poor vaccine responders were noted in alpha or beta diversity of the gut microbiota. The faecal metabolome of satisfactory responders was enriched in the microbial metabolite trimethylamine (q=0.03). Trends were noted linking the short chain fatty acid butyrate with satisfactory response (P=0.01) and succinate with poor response (P=0.06). No significant differences in primary or secondary bile acids were found to associate with vaccine response. The butyrate-producing genus Roseburia was positively correlated with faecal butyrate abundance (q=0.03). Conclusion: Our data suggest an association between gut microbiota function and variable serological response to vaccination against SARS-CoV-2 in immunocompromised patients. Microbial metabolites including trimethylamine and butyrate may be important in mitigating anti-TNF-induced attenuation of the immune response.
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The arts and education fields recognize the importance of museums and art galleries as not only buildings that house hundreds, often thousands, of specialized objects, artworks, research, and conservation but rather as institutions sharing the history of people and their environment, thus they play a substantive role in modern society. For art students, practitioners, and hobbyists, these institutions are often visited to provide inspiration and practice, although the COVID-19 pandemic has had a profound impact. National lockdowns and restrictions, and social distancing measures meant museums and art galleries underwent mandated temporary closures, and socially distanced specified visitor routes often meant onsite art practice was no longer permitted. This exploratory pictorial takes a first-person research method to present a collection of reflections, experiences, and example artworks by facilitators of an art practice group that moved from on-site to online practice during the pandemic. © 2022 ACM.
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Background: Ad26.COV2.S is a single-shot vaccine that has demonstrated clinical efficacy against symptomatic COVID-19. In this study, we report the durability of immune responses in 20 rhesus macaques received single-shot Ad26.COV2.S and the immunogenicity of a booster shot at 8-10 months following the initial immunization. Methods: Animals were immunized by intramuscular route with 1011 vp (N=10) or 5x1010 vp (N=10) Ad26.COV2.S and were followed for either 230 or 315 days. Animals were then boosted with 5x1010 vp Ad26.COV2.S (N=10). Humoral immune responses including RBD-specific Ig ELISA and pseudovirus-based virus neutralization response were monitored. Circulating RBD-specific memory B cells and bone marrow plasma cells were assessed by multiparameter flow cytometry. Results: Ad26.COV2.S elicited robust and comparable RBD-specific binding and neutralizing antibody responses in animals that received the 1011 vp and 5x1010 vp doses, which peaked on days 28-56, and then showed a biphasic decay. All animals showed binding antibody responses for the duration of follow-up, and 17 of 20 animals showed neutralizing antibody responses by day 230-315. RBD-specific memory B cell response peaked on day 14-28 followed by a gradual decline, and remained detectable in 17 of 20 animals by day 230-315. On day 315 following vaccination, bone marrow RBD-specific PCs were detected in the majority of vaccinated macaques, including in all animals that received the 1011 vp dose. Following Ad26.COV2.S boost immunization, RBD-specific binding antibody responses increased 31-69 fold compared with pre-boost levels against the ancestral (WA1/2020), alpha (B.1.1.7), beta (B.1.351), kappa (B.1.617.1), and delta (B.1.617.2) SARS-CoV-2 variants. Neutralizing antibody responses increased 23-43 fold compared with pre-boost levels against the ancestral, alpha, beta, gamma (P.1), kappa, and delta SARS-CoV-2 variants. Antigen-specific memory B cell response also increased 8 fold following the boost immunization. Conclusion: Ad26.COV2.S elicited durable antibody and B cell responses, and a late boost with Ad26.COV2.S resulted in a dramatic increase in humoral immunity that were highly cross-reactive across multiple SARS-CoV-2 variants in rhesus macaques. These data contribute to our understanding of Ad26.COV2.S durability and boostability, and provide important data to inform COVID-19 vaccine boosting strategies in humans.
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Background: The CVnCoV (CureVac) mRNA vaccine for SARS-CoV-2 has recently been evaluated in a Phase IIb/III efficacy trial in humans. CV2CoV is a second-generation mRNA vaccine with optimized non-coding regions and enhanced antigen expression. Methods: Here we report a head-to-head study of the immunogenicity and protective efficacy of CVnCoV and CV2CoV in nonhuman primates. We immunized 18 cynomolgus macaques with two doses of 12 ug of lipid nanoparticle formulated CVnCoV, CV2CoV, or sham (N=6/group). Results: CV2CoV induced substantially higher binding and neutralizing antibodies, memory B cell responses, and T cell responses as compared with CVnCoV. CV2CoV also induced more potent neutralizing antibody responses against SARS-CoV-2 variants, including B.1.351 (beta), B.1.617.2 (delta), and C.37 (lambda). While CVnCoV provided partial protection against SARS-CoV-2 challenge, CV2CoV afforded robust protection with markedly lower viral loads in the upper and lower respiratory tract. Antibody responses correlated with protective efficacy. Conclusion: These data demonstrate that optimization of non-coding regions can greatly improve the immunogenicity and protective efficacy of an mRNA SARS-CoV-2 vaccine in nonhuman primates.
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Purpose: Describe associations between changes in employment during the COVID-19 pandemic and financial toxicity among adolescent and young adult (AYA) cancer patients and survivors. Methods: Eligible individuals were diagnosed between 15-39 years of age, currently age ≥18, and recruited through the Huntsman-Intermountain Adolescent and Young Adult Cancer Care Program. We sent the survey to N=709. Survey questions included demographics, employment, and the 11-item COmprehensive Score for financial Toxicity (COST) which captures financial toxicity in the last four weeks. COST is scored from 0 to 44 with lower scores indicating greater financial toxicity. Scores were dichotomized as high (0-21) or low (22-44). Changes in employment since March 2020 were categorized as no change, increase in hours, and decrease in hours/lost job. We calculated descriptive statistics and fit a multivariable logistic regression to examine the association between employment change and financial toxicity controlling for current age, gender, and treatment status. Results: Of 280 respondents (39.5% participation), 198 (70.7%) were employed prior to the pandemic and were thus included in analyses. Employed individuals were a mean of 29.4 years of age (range 18-58), 64.3% were female, and 50.5% had received cancer treatment since March 2020. Nearly a third (31.3%) had lost their job or reported reduced hours;50.3% reported high financial toxicity. Among those previously employed, participants who lost their job or had their hours reduced had nearly six times the odds of high financial toxicity than those who reported no change in hours (Odds Ratio [OR]=5.8, 95% Confidence Interval [CI]: 2.6-12.9). In the same model, the odds of reporting high financial toxicity was over twice as high among females than males (OR=2.3, 95% CI: 1.2-4.5). Treatment status and age were not significant. Conclusions: Employment changes during the COVID-19 pandemic resulted in increased financial toxicity among a population already susceptible to high financial hardship. Societal gender inequity appears to be mirrored in participants' financial toxicity during the pandemic. Employment interventions for patients and survivors of AYA cancers who have experienced job loss or reduction in work hours during the pandemic are needed and may particularly benefit females.
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Purpose: To describe adolescent and young adult (AYA) cancer patients' and survivors' experiences with telehealth during the COVID-19 pandemic. Methods: Eligible participants were identified through the Huntsman Intermountain Adolescent and Young Adult Cancer Care Program, which provides age-specific programming and patient navigation to AYA cancer patients and survivors in Utah and surrounding Mountain West states. Participants were emailed an online survey if they were currently age 18 or older and had been diagnosed with cancer between the ages of 15-39 years. We applied descriptive statistics to summarize demographics, comfortability with technology, access to reliable internet connection, and perceived quality of care while using telehealth. Results: AYAs (N=280) were an average of 29.4 years old at survey (range 18-58);65.2% were female and 82.4% non-Hispanic white. Over half (54.2%) had received cancer treatment since March 2020. All participants reported owning a computer, tablet, and/or smart phone they could use for telehealth appointments. The majority (93.5%) reported almost always or always having a reliable internet connection. AYAs felt most comfortable having a telehealth appointment in their own home (96.4%);only 12.5% felt comfortable using telehealth at work. Since March 2020, (N=183) 65.4% had a health care visit moved to a telehealth platform due to COVID-19. Of those who recently moved to telehealth, 60.1% had an oncology visit, 33.9% had a primary care visit, and 31.1% had a mental health visit. Additionally over one-third (35.2%) reported the quality of their medical care had decreased since moving to telehealth. This was most commonly due to 1) troubles with audio, video, or connecting through telehealth platforms;2) telehealth visits feeling impersonal;and 3) feeling that providers more easily dismissed or did not fully address their symptoms. Conclusions: Although AYAs are digital natives, over one third of AYAs feel the quality of their medical care has decreased since moving to telehealth for COVID-19. Further research should explore medical provider training in using telehealth systems and encourage telehealth practices that help AYAs feel more supported and understood.
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Sketching is recognised as an important tool in the journey of research and practical processes of Human Computer Interaction (HCI) and User Experience Design (UX). However, it is not always included in higher education curriculum, in which HCI and UX is often a single module in one year group amongst more “traditional” approaches in computer science. The benefits of sketching and visualisation practice can be used by students across the board in computing degrees, but especially so within HCI and UX, where novel approaches and ideation are valued and practiced. By the time learners leave higher education, they may or may not have engaged with this valuable skill. HCI has a lot in common with UX, and the two are commonly conflated to be the same thing, though despite this, there is not a focus on practical sketching and visualisation skills. In comparison, within the UX workplace environment, sketching is part of design thinking and vital for the structuring of ideas, storyboards, user journey maps and more. We focus on the incorporation and exploration of sketching as an educational tool, technique and output within HCI, and how this learning is given and received over a number of contexts. This paper outlines case studies where sketching has been included in both formal and informal learning with both undergraduate, postgraduate, and post education populations, and how this knowledge exchange has been both enhanced and changed by the recent compulsory move to online teaching during the COVID-19 pandemic. We discuss practice and learning in the context of four case studies: Data-Sketching in a First Year Minor;Sketching in a 2nd Year HCI Cohort;Sketching as a Foundational Tool for MSc User Experience Design;and, Sketching in HCI for Peer-to-Peer Learning. Further, we make recommendations for incorporating sketching practice and theory into both undergraduate and postgraduate university programs, as well as for peer-to-peer learning in both public and private contexts. Copyright © 2022 Lewis and Sturdee.
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Canada has one of the largest cohorts of young carers aged 15 to 24 who provide unpaid care for a family member. Although the body of research on young carers is growing in Canada, knowledge on the experiences and needs of young carers living in remote and rural communities is almost absent. This study aimed to understand and address the needs of young carers in rural/remote communities to support our community partner's goal of expanding their resources and support of this underserved population. The study was conducted in two phases with the first phase being a needs assessment and the second phase addressed those needs. In Phase 1 (conducted pre-COVID-19), three focus groups were conducted with young carers from rural and urban communities with 20 young carers participating in total. Six themes were identified: Internet Usage in Daily Life;Finding and Filtering Information;Concerns Related to Internet Use;Social and Mental Support;What Makes Caregiving More Challenging;and Designing Something to Make Caring Easier. During Phase 2 (conducted mid-COVID-19), 2 focus groups were held via Zoom for Healthcare with a mix of rural and urban young carers in each group. One of the focus groups was held with those under 18 years old and the other included those between 18 to 25 years old. Four themes were identified: Responses to Emergencies;Awareness of Emergency Planning;Potential Impact on Planned Behaviour;and Considerations and Suggestions for Improvement.
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Background: Gestational diabetes mellitus (GDM) is associated with increased perinatal complications. Our service historically saw patients with GDM monthly. Self-monitoring blood glucose (SMBG) levels were reviewed weekly via email. During COVID lockdown (23 March 2020-14 September 2020) we limited face-to-face contact and started using an App-based communication platform (GDm-HealthTM). Patients recorded SMBG on the App. Face-to-face contact was reduced to monthly scans or if insulin start was needed. Otherwise, contact was made via the app or telephone. We wanted to establish whether reduced face-to-face contact had impacted glucose control or postnatal outcomes. Methods: A retrospective analysis was performed comparing fasting glucose data and postnatal outcomes for women with the App (June 2020-31 December 2020) and standard care ( June 2019-31December 2019). Results: There were 62 women in the before App group (BA) and 61 in the with App group (WA). There was no significant difference in baseline characteristics. Results are shown as mean (SD). Treatment at 36 weeks gestation: diet only BA 22 vs WA 26 (p=0.40);metformin only BA 16 vs WA 22 (p=0.28);insulin (+metformin) 24 vs 13 (p=0.06). Fasting glucose at 36 weeks: BA 5.0 (1.1) vs WA 4.7 (0.3) mmol/L (p=0.12). Birth weight: BA 3.4 (0.6) vs WA 3.3 (0.5) kg (p=0.43) and Z score 0.3 (1.1) vs 0.4 (0.9) (p=0.77). Mode of delivery: vaginal BA 27 vs WA 14;instrumental BA 5 vs WA 7;caesarean section BA 30 vs WA 27 (p=0.78). Gestation at birth: BA 40 vs WA 38 weeks (p=0.16). Conclusion: App-based communication is effective with outcomes matching standard face-to-face GDM care.
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In this piece, I delve into some thoughts I've had about decision theory. These have been inspired by the vaccine rollout phase of the COVID-19 Pandemic. I focus on decision making under uncertainty, as it relates to the decision to get vaccinated or not.
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Background: In the US, pts living in rural areas have higher CRC mortality rates than urban areas. Clinical guidelines recommend testing for BRAF and RAS mutations and deficient mismatch repair/microsatellite instability in pts with mCRC. However, data on biomarker testing rates in rural communities compared with urban areas are limited. We surveyed ONC in the US who practice in rural areas or urban clusters to identify biomarker testing patterns and barriers (data previously reported) and conducted interviews with a select group of respondents to further understand key differences that may contribute to substandard biomarker testing rates in rural areas. Methods: A 2-part (quantitative and qualitative) survey was conducted with ONC who spend > 40% of their time providing direct care to pts in rural areas or urban clusters and who had treated ≥2 pts with stage IV mCRC in the month prior to the survey. After screening, a subset of those who completed the quantitative survey participated in the qualitative survey (a 30- minute, web-assisted, telephone interview). The interview questions targeted 6 areas: clinical practice description, biomarker and genomic testing patterns, pathology and molecular tumor board, tumor tissue journey, electronic health records, and training/educational opportunities. Results: Of the 99 ONC who responded to the quantitative survey, 17 were interviewed for the qualitative survey from June 16-29, 2021. A key finding of the quantitative survey was that although ONC reported being familiar with biomarkers relevant to mCRC, the reported rate of biomarker testing was suboptimal. The interviews probed reasons why testing does not align with current guidelines and found that challenges exist throughout the tumor tissue journey including insufficient tumor tissue available for testing (especially in the relapsed/refractory setting);lack of or limited protocols, clinical decision support systems, reflexive testing, and molecular tumor boards;lengthy and difficult-to-navigate next-generation sequencing reports;and financial toxicity surrounding biomarker tests (especially for underinsured pts), among other barriers. Despite these challenges, ONC reported easy access to third-party reference labs and electronic references, such as NCCN and UpToDate. Although telehealth visits have nearly quadrupled during the COVID pandemic, access to telehealth may be limited for pts living in rural areas or urban clusters. Conclusions: The ONC surveyed reported that practicing in rural/urban clusters poses unique challenges related to tissue acquisition, practice resources, pts' ability to pay, and clinical knowledge gaps that may affect biomarker testing rates in pts with mCRC. Addressing these gaps is warranted if optimal utilization of precision medicine tools is to be realized.
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The COVID-19 public health emergency created significant challenges for the safe conduct of clinical trials. The Clinical Trials Network conducts multi-site substance use treatment studies, of which several are in an active recruitment phase. Investigators within the Clinical Trials Network collaborate with the Clinical Coordinating Center and Data and Statistics Center, both at the Emmes Company, to effectively manage these trials and ensure data quality. In March 2020, the US Food and Drug Administration issued guidance for the conduct of clinical trials during the pandemic;notably, the Food and Drug Administration recommended capturing reasons for missing data, protocol deviations, or modified study procedures as related to COVID-19. The Clinical Coordinating Center and Data and Statistics Center worked with investigators to evaluate and modify study protocols to allow for flexibility in the collection of study assessments (e.g. off-site/home visits and telehealth visits) while ensuring the safety of participants and research staff and maintaining the integrity of trial data. In addition, an interdisciplinary team within the Clinical Coordinating Center and Data and Statistics Center reviewed the Food and Drug Administration guidance, identified changes to case report forms, and proposed these to investigators and sponsor for buy-in and approval. Namely, an existing case report form that previously captured missed visits was expanded to collect relevant information for all visits. The modified case report form is expected to be completed for all visits and was adapted to capture whether a visit occurred outside the prescribed visitwindow, if a visit was missed, and if not, where the visit occurred: in clinic, via telemedicine, and/or offsite. Furthermore, if any portion of the visit occurred at an offsite location, follow-up questions capture the location of urine sample collection, which is often the basis of primary outcome, and the location of medication dispensing/administration. Another change included the addition of COVID-19 response options to case report forms collecting data that have potential to be missing or otherwise impacted by COVID-19. To capture the nuances among (1) active COVID-19 infection, (2) lockdown-related isolation/quarantine, or (3) other COVID-19 factors including fears of exposure, we proposed a set of three response options for impacted forms: ''COVID-19: Illness,'' ''COVID-19: Public health measures,'' and ''COVID-19: Other.'' Likewise, to assess the impact on study procedures and assessments, a question was added to evaluate if a protocol deviation was related to COVID-19. Finally, the Data and Statistics Center included automated data queries for operational concerns related to visit flexibility. For example, if a participant's visit occurred entirely offsite, the system issues an automated query if any incongruous visit data point is indicated as being collected in clinic or via telemedicine (e.g. biospecimen). The interdisciplinary collaboration among the Clinical Coordinating Center, Data and Statistics Center, and investigators allowed for timely updates to the electronic data capture system to capture COVID-19-related data across Clinical Trials Network trials in a harmonized fashion and brought the Clinical Trials Network into compliance with Food and Drug Administration guidance. These data will also allow statisticians to conduct sensitivity analyses to assess the impact of COVID-19 on trial outcomes. This, along with the reasons for missing data, protocol deviations, and assessment changes due to COVID-19 will be included in final study reports of these trials.