ABSTRACT
Allogeneic hematopoietic cell transplantation (alloHCT) is a potentially curative treatment for patients diagnosed with blood cancers (such as acute myeloid leukemia) and blood disorders (such as sickle cell disease). It is a resource-intensive treatment that generally requires a long hospital stay and recovery period. If continuous caregiver support is not available, alloHCT likely will not be a treatment option. To learn more about caregiver requirements and perspectives on those requirements, we conducted web-based focus groups with alloHCT social workers who worked with adult patients at United States (US) transplant centers (TCs) from May-July 2022. Web-based interviews with adult alloHCT recipients,caregivers of adult alloHCT recipients, and physicians/advanced practice professionals will also be conducted. Twenty-two social workers from TCs across the US (Midwest [n=8];West [n=5];Northeast: [n=5];South, [n=4]) and with varying volumes (median: 97 alloHCTs performed/year) participated. All noted their TC required a caregiver to proceed to alloHCT. However, there was variation across TCs in the length of time a recipient was required to have a caregiver, the distance/time needed to stay near the TC post-alloHCT, and COVID-19 vaccination requirements. The majority of participants also noted variance among the transplant team in allowing exceptions for caregiver requirements. All participants noted it would be helpful to have a 'gold standard' of requirements across TCs, though there was discussion about what such a standard would include, as well as the need for flexibility to account for different patient and TC needs. Social workers were also asked to identify patient barriers to meeting the caregiver requirement;common barriers included patients feeling they did not have anyone to ask to be a caregiver, the need to relocate closer to the TC, and financial barriers. The impact of the COVID-19 pandemic was also noted (e.g., vaccination requirements, and increased telework allowing more flexibility for caregivers). In analysis of the first of four populations interviewed in this study, social workers reported variation in caregiver requirements across TCs. Finding a caregiver is one of many barriers patients face in accessing alloHCT. Though this variation may allow for some flexibility, it may also contribute to access barriers. This study focused on those who received an alloHCT, but further research is needed to learn about barriers faced by those unable to access alloHCT. Results from this and other cohorts will describe current practices related to caregiver requirements and help inform the development of new programs to reduce caregiver-related barriers to alloHCT.Copyright © 2023 American Society for Transplantation and Cellular Therapy
ABSTRACT
Allogeneic hematopoietic cell transplantation (alloHCT) is a potentially curative treatment for individuals diagnosed with blood cancers (e.g., acute myeloid leukemia) and blood disorders (e.g., sickle cell disease). Most transplant centers (TCs) require a caregiver to proceed with alloHCT. Caregiver requirements can be one of many barriers to alloHCT, as individuals without a caregiver can have limited or no access to this treatment. Few studies have described TC caregiver requirements, particularly from the perspective of recipients and caregivers. To learn more about alloHCT caregiver requirements and perspectives on those requirements, we conducted web-based interviews with adult alloHCT recipients and adult caregivers of adult alloHCT recipients in the United States (US) starting in May 2022. Recipients needed to be between 100 days and 1-year post-HCT and in remission;Table 1 describes participant demographics.(Table Presented)The majority of participants noted that their TC required a caregiver to proceed to alloHCT;however, there was variation in the length of time required to have a caregiver. When asked their perspective on the amount of time the TC required, the majority of participants noted that the actual length of time depended on the recipient's recovery (with some noting more time was needed and others noting less). Participants were also asked to share barriers they faced regarding the caregiver role. A common barrier included not fully understanding the specifics of the caregiver requirements, or what it would entail. Some recipients described being provided with too much information, making it difficult to sort through, while others reported feeling like they did not receive enough information. Other barriers identified by recipients included competing priorities of the caregiver (such as work/ home responsibilities and childcare), language barriers, and finances. Common barriers identified by caregivers included: feeling like they could not take time for themselves/their own health suffered and needing to be trained to perform medical tasks. Many recipients and caregivers also noted the impact of the COVID-19 pandemic (e.g., postponing alloHCT, trepidation about going to the TC, post-alloHCT housing restrictions, and increased telework for caregivers). Preliminary analysis of recipients and caregivers interviews showed variation in caregiver requirements across TCs. There is a need for clear, accessible information to help recipients and caregivers understand the caregiver role and requirements. This study included recipients and caregivers;further research is needed to identify barriers faced by individuals unable to access alloHCT. Results from this study will help facilitate the development of programs to help improve access to alloHCT.Copyright © 2023 American Society for Transplantation and Cellular Therapy
ABSTRACT
BACKGROUND: Continuous positive airway pressure (CPAP) therapy is commonly used for respiratory failure due to severe COVID-19 pneumonitis, including in patients deemed not likely to benefit from invasive mechanical ventilation (nIMV). Little evidence exists demonstrating superiority over conventional oxygen therapy, whilst ward-level delivery of CPAP presents practical challenges. We sought to compare clinical outcomes of oxygen therapy versus CPAP therapy in patients with COVID-19 who were nIMV. METHODS: This retrospective multi-centre cohort evaluation included patients diagnosed with COVID-19 who were nIMV, had a treatment escalation plan of ward-level care and clinical frailty scale ≤ 6. Recruitment occurred during the first two waves of the UK COVID-19 pandemic in 2020; from 1st March to May 31st, and from 1st September to 31st December. Patients given CPAP were compared to patients receiving oxygen therapy that required FiO2 ≥0.4 for more than 12 hours at hospitals not providing ward-level CPAP. Logistic regression modelling was performed to compare 30-day mortality between treatment groups, accounting for important confounders and within-hospital clustering. FINDINGS: Seven hospitals provided data for 479 patients during the UK COVID-19 pandemic in 2020. Overall 30-day mortality was 75.6% in the oxygen group (186/246 patients) and 77.7% in the CPAP group (181/233 patients). A lack of evidence for a treatment effect persisted in the adjusted model (adjusted odds ratio 0.84 95% CI 0.57-1.23, p=0.37). 49.8% of patients receiving CPAP-therapy (118/237) chose to discontinue it. INTERPRETATION: No survival difference was found between using oxygen alone or CPAP to treat patients with severe COVID-19 who were nIMV. A high patient-initiated discontinuation rate for CPAP suggests a significant treatment burden. Further reflection is warranted on the current treatment guidance and widespread application of CPAP in this setting. FUNDING: L Pearmain is supported by the MRC (MR/R00191X/1). TW Felton is supported by the NIHR Manchester Biomedical Research Centre.