Vaccinationis a critical tool in the prevention of COVID‐19 infection for individuals and for communities. The mRNA vaccines contain polyethylene glycol (PEG) as a stabilizer. Currently, in North America, only the BNT162b2 (Pfizer‐BioNTech
)
mRNA vaccine is approved for individuals aged 12–17. Most patients treated with contemporary regimens for acute lymphoblastic leukemia receive PEG‐asparaginase (PEG‐ASNase) and 10%–30% will develop allergic reactions. Optimizing access and safety for vaccine administration for these patients is critical. This report describes a process developed to support COVID vaccination in a cohort of adolescents and young adults with a history of PEG‐ASNase allergy.
ADM is frequently abnormal in children with OI and GI symptoms. Upper GI motility studies should be a part of the comprehensive evaluation in this population.
Over the past decade, the field of valvular heart disease (
VHD
) has rapidly transformed, largely as a result of the development and improvement of less invasive transcatheter approaches to valve repair or replacement. This transformation has been supported by numerous well‐designed randomized trials, but they have centered almost entirely on devices and procedures. Outside this scope of focus, however, myriad aspects of therapy and management for patients with
VHD
have either no guidelines or recommendations based only on expert opinion and observational studies. Further, research in
VHD
has often failed to engage patients to inform study design and identify research questions of greatest importance and relevance from a patient perspective. Accordingly, the National Heart, Lung, and Blood Institute convened a Working Group on Patient‐Centered Research in Valvular Heart Disease, composed of clinician and research experts and patient advocacy experts to identify gaps and barriers to research in
VHD
and identify research priorities. While recognizing that important research remains to be done to test the safety and efficacy of devices and procedures to treat
VHD
, we intentionally focused less attention on these areas of research as they are more commonly pursued and supported by industry. Herein, we present the patient‐centered research gaps, barriers, and priorities in
VHD
and organized our report according to the “patient journey,” including access to care, screening and diagnosis, preprocedure therapy and management, decision making when a procedure is contemplated (clinician and patient perspectives), and postprocedure therapy and management. It is hoped that this report will foster collaboration among diverse stakeholders and highlight for funding bodies the pressing patient‐centered research gaps, opportunities, and priorities in
VHD
in order to produce impactful patient‐centered research that will inform and improve patient‐centered policy and care.
Background
Sarcopenia, a reduction in skeletal muscle mass and function, is a condition that contributes to functional decline and disability in older adults. Although research on this geriatric condition has developed rapidly in recent years, little work has been done to document whether practicing physicians are incorporating sarcopenia into their clinical practice.
Methods
An online survey of 253 practicing U.S. physicians assessed knowledge of sarcopenia, use of the term in practice, motivation for screening patients, and diagnostic and treatment approaches. They were board certified in four practice areas: internal medicine (n = 69), family medicine (n = 69), geriatrics (n = 40), or physical medicine and rehabilitation (PM&R) (n = 75).
Results
Less than 20% of internists and family medicine physicians reported being very familiar with the term sarcopenia, with substantially higher familiarity at this level reported among geriatricians (70%) and among PM&R specialists (41%). Two additional findings pointed to deficiencies in sarcopenia knowledge and practice: participants substantially overestimated the prevalence of sarcopenia in older adults (44% of participants reported an expected prevalence of >25%) compared to findings from published studies (indicating 10% of older adults experience sarcopenia); over 75% reported not typically using specific diagnostic criteria or being unsure if their approach utilized any specific criteria. When asked what terminology they use in a medical chart for a patient presenting with significant loss of muscle mass and strength, only 8% said sarcopenia.
Conclusions
Sarcopenia, a condition that can have a major impact on older adults as they age, has not been fully incorporated into the knowledge base and practices of active physicians. The survey data suggest that improving physician familiarity with sarcopenia and having universal agreement on criteria for diagnosis may increase the screening for and treatment of sarcopenia.
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