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J Clin Oncol ; : Jco2200461, 2022.
Article in English | PubMed | ID: covidwho-2140243


PURPOSE: The financial burden experienced by blood or marrow transplant (BMT) survivors during the COVID-19 pandemic remains unstudied. We evaluated the risk for high out-of-pocket medical costs and associated financial burden experienced by BMT survivors and a sibling comparison group during the COVID-19 pandemic. METHODS: This study included 2,370 BMT survivors and 750 siblings who completed the BMT Survivor Study survey during the pandemic. Participants reported employment status, out-of-pocket medical costs, and financial burden. Medical expenses ≥ 10% of the annual household income constituted high out-of-pocket medical costs. Logistic regression identified factors associated with high out-of-pocket medical costs and financial burden. RESULTS: BMT survivors were more likely to incur high out-of-pocket medical costs (11.3% v 3.1%;adjusted odds ratio [aOR], 2.88;95% CI, 1.84 to 4.50) than the siblings. Survivor characteristics associated with high out-of-pocket medical costs included younger age at study (aOR(per_year_younger_age), 1.02;95% CI, 1.00 to 1.03), lower prepandemic annual household income and/or education (< $50,000 US dollars and/or < college graduate: aOR, 1.96;95% CI, 1.42 to 2.69;reference: ≥ $50,000 in US dollars and ≥ college graduate), > 1 chronic health condition (aOR, 2.82;95% CI, 2.00 to 3.98), ≥ 1 hospitalization during the pandemic (aOR, 2.11;95% CI, 1.53 to 2.89), and being unemployed during the pandemic (aOR, 1.52;95% CI, 1.06 to 2.17). Among BMT survivors, high out-of-pocket medical costs were significantly associated with problems in paying medical bills (aOR, 10.57;95% CI, 7.39 to 15.11), deferring medical care (aOR, 4.93;95% CI, 3.71 to 6.55), taking a smaller dose of medication than prescribed (aOR, 4.99;95% CI, 3.23 to 7.70), and considering filing for bankruptcy (aOR, 3.80;95% CI, 2.14 to 6.73). CONCLUSION: BMT survivors report high out-of-pocket medical costs, which jeopardizes their health care and may affect health outcomes. Policies aimed at reducing financial burden in BMT survivors, such as expanding access to patient assistance programs, may mitigate the negative health consequences.

Annals of the Rheumatic Diseases ; 81:50, 2022.
Article in English | EMBASE | ID: covidwho-2008893


Background: An important but insufficient aspect of care in people with infam-matory arthritis (IA) is empowering them to acquire good understanding of their disease and build ability to deal effectively with the practical, physical and psychological impacts of it. This extends beyond drug therapy and emphasises the ability to self-manage, with the right support, as an essential component of care. Good self-efficacy and coping skills reduce health and fnancial burden to the individual as well as the health service, beneftting society overall. Provision of excellent supported self-management education is at the heart of what NRAS does and it was due to the difficulty of getting Commissioners to fund our face-to-face group self-management that led to our building an e-learning programme to expand on and replace our 6-week programme. Objectives: To co-create an intuitive, easy to use, modular e-learning programme, free for all and which health professionals (HCPs) could refer their patients to. This makes supported self-management and evidence-based education accessible to all, wherever they live. SMILE enables HCPs to meet both NICE guideline and quality standards in RA against which rheumatology units in England and Wales are currently audited, as well as EULAR Recommendations for self-management strategies in infammatory arthritis. Methods: In 2019 with initial funding in place, we worked with our provider to help us realise our goal of developing a state-of-the art e-learning experience in a modular format for people with RA. The programme had to be 1) simple to use;2) interactive;3) innovative and engaging;4) able to measure impact through achievement of learning objectives and use of a validated patient reported outcome measure. The programme also had to be integrable with our Salesforce database enabling us to collect data and target resources to individuals, driven by identifed need. Results: Delayed by COVID, we launched with 4 modules on 17/09/2021. The 4 modules comprise: Foundation Module covering the importance of self-management which has the RA Impact of Disease PROM embedded;Newly Diagnosed;Meet the Team and Managing Pain and Flares. A ffth module on Medicines in RA will be launched 1st quarter 2022 and 4 further modules will be uploaded in 2022. To date (26/01/22), 760 people have registered, of which 313 have completed a baseline RAID and this reveals that <50% are achieving minimal acceptable state of 3 or less. Over 78% of registrants are not NRAS members, and 634 modules have been completed. Early indications are that almost all are achieving learning objectives. More data will be available by June 2022. Conclusion: Early indications demonstrate that people are successfully engaging with the programme and we have marketing activity lined up to raise further awareness of the value of SMILE with both potential users and rheumatology teams in 2022. Massive workforce issues together with signifcant backlogs of existing patients caused by the pandemic, have restricted the ability of Teams to provide education and self-management support for their patients. SMILE offers high quality, evidence-based learning opportunities for their patients and has been co-created with health professionals and people with RA at every step. With remote consultations here to stay, the importance of patients having access to evidence based online learning which they can tailor to their specifc needs and improve their self-efficacy is even more critical.