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Objectives: Since 2016, Sudan was transitioning from limited healthcare subsidization to universal health coverage (UHC). Increasing healthcare access was widely considered beneficial, but some worried that UHC would overwhelm clinical services. In 2020 and 2021 UHC faced the challenge of Covid-19. We undertook a review of national healthcare utilization and enrolment data in order to better understand the impact of UHC in Sudan. Method(s): We conducted a descriptive study using National Health Insurance Fund databases. We analyzed annual enrolment, participating facilities, prescription volume and utilization from 2016 to 2021. Enrolment was stratified by employment status (government, informal sector, private sector, pensioner, impoverished). Utilization was assessed by type of care: primary, specialty, chronic disease and other;we calculated the ratio of primary to specialty care visits. We used the Mann-Kendall test for evaluating trends. Result(s): Participating facilities increased from 2,083 in 2016 to 3,549 in 2019, with slight contraction to 3,495 during 2020-21. Annual enrolment increased significantly, from 16.4 million in 2016 to 36.5 million in 2021 (p value < 0.01). The impoverished sector had the largest increase in enrolment (217%);informal sector had the lowest enrolment growth rate (7%). Volume of primary healthcare visits and prescriptions increased every year, except 2020, the first year of Covid-19 in Sudan. Specialty healthcare visits decreased over the same period, from 2,461,424 to 1,249,585 (p < 0.01). The ratio of primary to specialty visits increased from 6.0 in 2016 to 15.7 in 2021 (p < 0.001). Conclusion(s): In Sudan, transition to UHC increased utilization of primary care services, but at a slower rate than enrolment growth. The ratio of primary to specialty visits increased and specialty visits declined, suggesting that more primary care may have prevented specialist-requiring disease states and sequelae. Fears of overwhelming the health system were unfounded indicating that other barriers to healthcare might exist.Copyright © 2023
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We previously reported on our experience of an in-person Scottish Photobiology Service (SPS) patient engagement event in 2019 and of its utility in defining what matters to patients with photosensitivity. We identified key issues with delays in referral from primary care, lack of availability of peer support and a need for disease-specific information to raise awareness of photosensitivity for family and employers. Through a follow- up workshop, we identified a workstream of activities planning to address these issues, which were modified by the subsequent COVID-19 pandemic. However, we successfully moved our programme to a virtual platform, and we report on our progress. Twice-yearly virtual TEAMS patient engagement half-day events, attended by patients and staff, provided patients with a forum to discuss with each other issues that they have identified as being important to them. These ranged from the isolation, anxiety and embarrassment associated with photosensitivity, dealing with friends who do not understand their condition, through to coping mechanisms and practicalities, such as sourcing sun protective clothing, dealing with sports activities and photoprotective measures in schools. The virtual events have received extremely positive feedback both in terms of content and utility for patients, as well as the convenience of the virtual format. To supplement these activities, we have also distributed twice-yearly SPS newsletters since 2020, initiated at the start of the COVID-19 pandemic, to ensure our patients knew we were there for them, despite the challenges of the pandemic and, again, this was most positively received. Regarding delays in referral from primary care, patient feedback indicated that this was mainly due to not being taken seriously, possibly due to a lack of understanding of photosensitivity in community care. We are addressing this by developing a 'photosensitivity red flag' poster for distribution throughout primary care in Scotland to raise awareness of the symptoms to look out for in photosensitivity conditions. Finally, we have also embarked on creating a series of diseasespecific podcasts. These involve an informal discussion between a patient with photosensitivity and a consultant photodermatologist, with a mediator present, to raise awareness of the true impact of a range of photodermatoses on many aspects of life. We demonstrate this ongoing programme of diverse patient engagement and educational activities in photodermatology, to highlight the model of a multifaceted hybrid approach to provide additional support for patients with photodermatoses. Acknowledgments: we wish to acknowledge all our SPS patients, their families and staff for their invaluable contributions.
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Purpose: The purpose of this paper is to report findings from a service evaluation undertaken within a single specialist child and adolescent mental health service (CAMHS) team. The team works closely with local authority children’s services to serve specific populations recognised as experiencing higher levels of mental health need, including children living in alternative care and with adoptive families. The evaluation sought to better understand the experience of this provision during the COVID-19 pandemic and concomitant increase in remote and digitally mediated care delivery. Design/methodology/approach: Analysis of the accounts of 38 parents, carers and professionals involved with the team gathered via telephone interviews and email and postal questionnaires. Findings: Similar views were expressed from participants involved with the team before and following the onset of the pandemic. Overall, satisfaction was high;however, changes in care appeared more challenging for those already involved with the team before the pandemic. Differences in experience between groups were also evident. Whereas foster carers’ accounts were generally appreciative of the involvement of clinicians, particularly regarding clinician–patient relationships, amongst adoptive parents and members of children’s birth families there were more mixed and negative impressions. Originality/value: Locally based service evaluations can help inform care pathway planning in specialist CAMHS provision as part of wider quality improvement initiatives. This is especially relevant considering the repercussions of the COVID-19 pandemic and as the longer-term acceptability of remote working practices is appraised. © 2022, Emerald Publishing Limited.
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Background: We have previously described AUTO1, a CD19 CAR with a fast off-rate CD19 binding domain, designed to reduce CAR T-cell immune toxicity and improve engraftment. Its clinical activity has been tested in r/r paediatric and adult B-ALL (Ghorashian S et al., Nat Med 2019;Roddie C et al., JCO 2021). This data confirms the intended function of the receptor, with low levels of CRS/ICANS and long-term engraftment of CAR T-cells observed in both patient groups. Aims: We have initiated testing of AUTO1 in the setting of B-NHL and CLL/SLL (NCT02935257). Methods: Manufacturing: CAR T-cell products were generated using a semi-automated closed process from non-mobilised patient leukapheresate. Study design: Subjects ≥ 16y underwent lymphodepletion with fludarabine (30mg/m x3) and cyclophosphamide (60mg/kg x1) prior to AUTO1 infusion, with the exception of the DLBCL cohort who additionally received a single dose of pembrolizumab (200mg) on day -1 to potentiate CAR-T expansion. AUTO1 dose varies based on the indication. Split dosing of 230 x106 CD19 CAR T-cells at day 0 and day 9 is employed in the CLL cohort. A single dose of 200 x106 CD19 CAR T-cells is delivered to patients with B-NHL. Study endpoints include feasibility of manufacture, grade 3-5 toxicity and remission rates at 1 and 3 months. Results: As of 8th February 2022, we enrolled 23 patients: 11 low grade NHL (LG-NHL:7 with FL and 3 with MCL), 7 DLBCL and 5 CLL. Apheresis was successful in all 23 patients and product manufacture was successful in 22 (pending in the last). 19 patients were infused: 10 with LG-NHL, 6 with DLBCL and 3 with CLL. 1 CLL patient was pending infusion at time of data cut-off and 2 patients died pre-infusion: 1 MCL patient, from COVID-19 and 1 CLL patient, from intracerebral haemorrhage. Patients treated with AUTO1 had a median age of 60 years (range 39-79), had received a median of 3 prior lines of treatment (range 2-8). Grade 1 CRS was reported in 6/19 and Grade 2 CRS in 3/19. No ICANS was observed in the B-NHL and CLL cohorts. CAR engraftment was observed in 13/13 patients evaluated by qPCR with ongoing persistence in 12/13 patients at last follow-up. In the LG-NHL and DLBCL cohorts 10/10 and 4/5 evaluable patients respectively were in CMR by 18FDG PET-CT post-treatment. Responses were ongoing in 9/10 LG-NHL at 12 months and in 4/4 DLBCL at months 1, 3, 3 and 6. In the CLL cohort, 2/3 evaluable patients achieved MRD negative remission in the bone marrow with residual small volume lymph nodes by CT at 6 and 3 months of follow-up respectively. 1 CLL patient did not engraft and had SD at month 1. Summary/Conclusion: AUTO1 has a tolerable safety profile in patients with r/r B-NHL and CLL despite high disease burden. Early data shows excellent complete remission rates and excellent CAR engraftment/expansion. Additional patients, updated data and longer follow up will be presented.
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In an effort to limit physical contact during the COVID-19 pandemic, there has been rapid implementation of virtual cancer care clinics using messaging, audio, and video communication. This model has advantages, particularly in convenience for patients who do not have to travel to a distant centre for specialist care, but has the potential to limit communication and also omits physical examination. The aim of this survey study was to assess whether patients attending the oncology unit at a tertiary care academic cancer centre were satisfied with the virtual clinic model and explore challenges in the delivery of virtual care. We also surveyed medical oncology trainees and consultant oncologists in the centre on the use of virtual care. Methods: All patients attending St Vincent's University Hospital Oncology, Dublin, Ireland, who had received a virtual oncology clinic appointment were invited by text message to participate in a survey study analysing attitudes towards virtual oncology clinics. Medical oncology trainees and consultants working were also invited to give their opinions. Results: Between April and October 2020, 207 patients (of 600 invited) who had at least one virtual clinic consultation responded to the survey. 95% had their consultation via telephone, and 5% by email. 80% reported satisfaction with the experience. 85% received timely notice of their appointment, but 50% of patients did not receive a telephone call at the scheduled time. 80% of patients thought they had enough time with the doctor. Some patients who were travelling from outside Dublin found virtual clinics more convenient. 50% of patients want to continue virtual consultations post Covid-19;the main criticism was that patients want to receive the call at the appointed time. 14 medical oncology trainees (of 18 invited)and 6 consultants (of 8 invited) responded to the survey. 92% of trainees and 100% of consultants believed virtual care is inferior to face to face care. 85% of junior doctors and 100% of consultants surveyed found clinical assessment more difficult via virtual consultation, but 76% of trainees and 100% of consultants found virtual clinics more time efficient. 62% of trainees reported face to face clinics as better for education from consultants. 80% of consultants believed the education of trainees was inferior in virtual clinics. 62% of trainees and 100% of consultants would like to continue virtual care in some form post Covid -19. Conclusions: Irish patients attending a tertiary academic cancer centre were mostly satisfied with the telephone consultations they had with their oncology team. Satisfaction rates were lower among the doctors than patients, reflecting doctors' difficulties in clinical assessment and teaching opportunities using virtual care. This survey highlights the need for more advanced technical platforms (including video calling and real time messaging) to provide excellent virtual care, as well as the development of new strategies for medical education through virtual clinics.
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Aims The aim of this study was to assess and quantify current staff attitudes and experiences of the Covid-19 pandemic in relation to training, research, education, patient care and staff morale. Methods An anonymised survey was carried out across the radiology departments of two university teaching hospitals over a 10-day period in December 2020. Results There was a total of 90 participants and 73% (66/90), 69% (62/90) and 86% (77/90) of participants either agreed or strongly agreed that the pandemic is having a negative effect on training, research and continued professional development respectively. A total of 63% (57/90) of participants either agreed or strongly agreed that the pandemic is having a negative effect on patient care and 88% (79/90) of participants either agreed or strongly agreed that the pandemic is having a negative effect on staff morale. Conclusion The Covid-19 pandemic has and continues to pose enormous challenges for the delivery of patient care, training, education and staff well-being with various novel and innovative solutions available to healthcare managers and providers. © 2021, Irish Medical Association. All rights reserved.
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Worldwide, the COVID-19 pandemic has had a devastating impact on prisoners. The prison environment and prisoner health put prison populations at a higher risk of contracting COVID-19. As a result, prison systems have adopted mitigation strategies to reduce the transmission of the virus into and within prisons. These strategies, however, have had an unintended impact on prisoners and their living conditions. In this article, we explore prisoners' lived experiences of the pandemic in English and Welsh prisons, captured through correspondence with prisoners throughout 12 months of regime restrictions, from April 2020 to April 2021. Drawing on prisoner narratives, the analysis reveals how the restricted regime has exacerbated the pains of imprisonment and had a detrimental impact on prisoners.
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INTRODUCTION We have previously described AUTO1, a CD19 CAR with a fast off-rate CD19 binding domain, designed to reduce CAR-T immune toxicity and improve engraftment. Its clinical activity has been tested in r/r paediatric and adult B-ALL. Cumulatively, this data confirms the intended function of the receptor, with low levels of CRS/ICANS and long-term engraftment of CAR T-cells observed in both patient groups. Recently, CAR-T therapy has been explored in indolent lymphomas such as follicular (FL) and mantle cell lymphoma (MCL), but a high incidence of toxicity including Grade 3-4 ICANS has been reported. We have initiated testing of AUTO1 in the setting of indolent and high-grade B-NHL and CLL (NCT02935257). METHODS Manufacturing: CAR T-cell products were generated using a semi-automated closed process from non-mobilised leukapheresate. Study design: Subjects ≥ 16y underwent lymphodepletion with fludarabine (30mg/m 2 x3) and cyclophosphamide (60mg/kg x1) prior to AUTO1 infusion, with the exception of the DLBCL cohort who additionally received a single dose of pembrolizumab (200mg) on day -1 to potentiate CAR-T expansion. AUTO1 dose varies based on the indication. Split dosing of 230 x10
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Social emotional literacy (SEL) interventions are widely implemented through schools, with growing evidence for a range of positive child outcomes. Increasingly, such interventions are delivered on online platforms. To date, there is limited evidence about digital SEL interventions in low- and middle-income countries (LMIC). The aim of this study was to explore the perceptions and experiences of children, parents and facilitator of the potential value of addressing SEL via tailored digital intervention. The intervention was designed to help children, in Brazil, to cope during the first COVID-19 pandemic lockdown. The intervention was delivered via a digital platform to groups of three children for 45 min per week for nine. Thirteen children, nine parents and nine facilitators were interviewed following the completion of the intervention. The data was analysed through a codebook thematic approach, which led to three themes: empowerment, participatory aspects of the intervention and digital adaptation. Overall, children's SEL development was reported to be supported during the COVID-19 pandemic, by the application of new skills outside the sessions. Children reported a number of empowering factors such as being heard and belonging. A range of useful participatory tools were identified including storytelling, games, drawings and videos. Blended SEL interventions involving both face-to-face and web-based facilitation could be developed within a tiered model of universal mental health promotion and targeted prevention. Access to online platforms would increase reach to large numbers of children in LMIC, especially in contexts of disadvantage.
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Background: We have previously described AUTO1 (CAT19), a CD19 CAR with a fast off-rate CD19 binding domain, designed to reduce CAR T-cell immune toxicity and improve engraftment. Its clinical activity has been tested in r/r paediatric and adult B-ALL. Cumulatively, this data confirms the intended fucntion of the receptor, with low levels of CRS/ ICANS and long-term engraftment of CAR T-cells observed in both patient groups. Recently, CAR therapy has been explored in indolent lymphomas such as follicluar (FL) and mantle cell lymphoma (MCL), but a high incidence of toxicity inluding Grade 3-4 ICANS has been reported. Aims: We have initiated testing of AUTO1 (CAT19) in the setting of indolent B-cell lymphoma (NCT02935257). Methods: Manufacturing: CAR T-cell products were generated using a semi-automated closed process from non-mobilised leucapheresate. Study design: subjects>/=16y underwent lymhpodepletion with fludarabine (30mg/m2 x3) and cyclophosphamide (60mg/kg x1) followed by a single CAR T-cell infusion of 200 x10
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Background: Tisagenlecleucel (Tisagen) and Axicabtagene Ciloleucel (Axicel) CD19 CAR T-cell products are licensed in the UK for adults with relapsed/refractory high-grade B-cell Non-Hodgkin's lymphoma (B-NHL). Infection rates for the first 30 days post CAR T range from 23% (Hill et al, Blood 2018) to 42% (Park et al, Clin Infect Dis 2018) with a predominance of early bacterial infections. Infection etiology is multifactorial, including pre-existing immunosuppression, poor marrow reserve, concomitant disease, delayed cytopenias and lymphodepletion. CRS has been shown to be an independent risk factor and associated treatment (Tocilizumab, steroids) may contribute. Risk assessment is limited by heterogenous cohorts in published reports and practice variations in use of prophylactic antibiotics and intravenous immunoglobulin (IVIG). To determine incidence and outcome of infection with licensed CAR T-cell products, we conducted a retrospective review at UCLH, London, UK. Methods: Electronic medical records were used to collect data on patients treated with Tisagen/Axicel from May 2019 to July 2020. Infections at ≤28 days and >28days following infusion were recorded. Infections were defined as a positive microbiological/virology result in conjunction with clinical symptoms. Invasive fungal infections were classified according to revised EORTC criteria. Infections were graded as severe (requiring systemic treatment) or life threatening (hypotension/organ support). Results: Sixty adults with B-NHL received Tisagen (n=19) or Axicel (n=41). Patients did not receive prophylactic antibiotics. IVIG was given for hypogammaglobulinaemia with recurrent infections (n=4). Within 28 days of infusion, 44 episodes of infection occurred in 28 patients (47%). Post day 28 (range 29-452), 19 episodes occurred in 9 patients (15%). Severe (n=9) and life-threatening (n=7) infection occurred in 15% and 12% of patients respectively, with two infections resulting or contributing to death (3.3%). Infections were bacterial (56%), respiratory viral (24%), other viral (14%) and fungal (6%). Six (10%) developed viral reactivations;CMV (n=1), BK virus in blood or urine (n=2), HHV6 (n=1) or AdV (n=2). PCR proven JC virus causing progressive multifocal leukoencephalopathy was reported in 1 patient at day 116. Only one late COVID-19 infection occurred despite the program remaining operational throughout lockdown. There was no association between early infection and CRS severity (p=0.43), or use (p=0.94) and dose of Tocilizumab (p=0.54). With regard to pre-treatment variables, advanced disease at time of infusion (≥stage 3) was associated with higher risk of any infection (OR 4.2, 95% CI 1.3- 13.4, p=0.016) and lines of prior therapy (≥3) with higher risk of early infection (OR 3.0, 95% CI 1.0-8.9, p=0.048). Steroid treatment was associated with a higher risk of early (and overall) infection (OR 3.0. 95% CI 1.0-8.6, p=0.048). A diagnosis of ICANS was associated with infection beyond day 30 (p=0.021). In multivariate analyses, steroid use (p=0.03) and ≥3 lines of prior therapy (p=0.021) were associated with infection ≤28 days of infusion. Steroid use (p= 0.049) and stage pre infusion (p=0.023) were associated with higher risk of any infection. Conclusion: In this real world analysis of B-NHL patients treated with Tisagen or Axicel, 47% developed early infection at ≤28 days. Severe or life-threatening infection occurred in 27% of patients. Multivariate analysis confirms significant association with (1) steroid exposure (2) ≥stage 3 disease and (3) ≥3 lines of previous therapy. There was no overt association with Tocilizumab use or CRS severity. Unlike other centers, our cohort did not receive prophylactic antibiotics or IVIG. Patients with advanced disease are high risk for CRS, ICANS and infectious complications. Risk modification strategies include bridging optimization to reduce disease burden pre CAR T with infectious prophylaxis from referral until at least 3-6 months post-infusion. In this analysis, steroids represent a significant ri k and efforts should be made to wean doses swiftly. The use of steroid sparing agents such as Anakinra may be important (clinical trial results awaited). In ≥ stage 3 disease or heavily pre-treated patients, there may be a role for prophylactic antibiotics but this should be explored within a clinical study with consideration of local antimicrobial resistance patterns. Disclosures: Neill: Novartis: Other: Funded attendance at academic conferences;Celgene: Other: Funded attendance at academic conferences. Townsend: Roche, Gilead: Consultancy, Honoraria. Ardeshna: Celgene: Honoraria, Membership on an entity's Board of Directors or advisory committees;Beigene: Membership on an entity's Board of Directors or advisory committees;Roche: Honoraria, Membership on an entity's Board of Directors or advisory committees;Gilead: Honoraria, Membership on an entity's Board of Directors or advisory committees;ADC Therapeutics: Membership on an entity's Board of Directors or advisory committees;Takeda: Honoraria, Membership on an entity's Board of Directors or advisory committees;Sanofi, Genzyme, AstraZeneca: Speakers Bureau;University College London (UCL)/UCL Hospitals (UCLH) Biomedical Research Unit: Other: Supported by this organisation. Cwynarski: Takeda: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other: Travel Support, Speakers Bureau;Celgene: Consultancy, Membership on an entity's Board of Directors or advisory committees;Atara: Consultancy, Membership on an entity's Board of Directors or advisory committees;Gilead: Consultancy, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau;KITE: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other: Travel Support, Speakers Bureau;Roche: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other: Travel Support, Speakers Bureau;Janssen: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other: Travel Support. Peggs: Autolus: Consultancy. Roddie: Celgene: Honoraria;Gilead: Honoraria;Novartis: Honoraria. O'Reilly: Gilead: Honoraria;Novartis: Honoraria, Other: Travel support.
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Following the declaration by the World Health Organization (WHO) of the Covid-19 pandemic on March 11, 2020, health organisations and staff have had to adapt and restructure services in order to respond to this global health emergency. Numerous containment strategies have been, and continue to be, introduced in this rapidly evolving and fluid situation with a significant shift towards virtual or remote patient assessment. The concept of virtual patient evaluation has previously been adopted across a range of medical and surgical specialities yielding safe and efficient pathways associated with good Patient Reported Outcome Measures (PROMs) and patient satisfaction rates. Whilst the idea of virtual patient review may be perceived as counterintuitive to the basic foundations and principles of face-to-face clinical practice, the current global pandemic, now more than ever, highlights the importance, need and benefits of this care model.