Although hematopoietic cell transplantation (HCT) is an effective treatment option for patients with life-threatening blood, immune system, or genetic disorders, many barriers besides a lack of suitably matched donors exist and can have an adverse impact on access and outcomes of HCT. In 2008, the National Marrow Donor Program, through its Office of Patient Advocacy, convened a diverse group of experts and transplantation survivors to identify persistent patient barriers throughout the transplantation process and to make recommendations for programs and initiatives to address these barriers, including new research opportunities. This group included transplantation physicians and other health care providers, relevant subject experts, and representatives from transplantation centers and patient advocacy organizations. Working groups were formed to identify patient barriers to HCT and to recommend and prioritize initiatives as they relate to the pretransplantation period, the early posttransplantation period, long-term survivorship, financial issues, and special populations. This report summarizes the symposium's deliberations and recommendations to address persistent patient barriers throughout the transplantation process.
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http://dx.doi.org/10.1016/j.bbmt.2009.08.004 | DOI Listing |
Eur Arch Psychiatry Clin Neurosci
December 2024
Department of Psychiatry, University of Muenster, Muenster, Germany.
Schizophrenia (SCZ), bipolar (BD) and major depression disorder (MDD) are severe psychiatric disorders that are challenging to treat, often leading to treatment resistance (TR). It is crucial to develop effective methods to identify and treat patients at risk of TR at an early stage in a personalized manner, considering their biological basis, their clinical and psychosocial characteristics. Effective translation of theoretical knowledge into clinical practice is essential for achieving this goal.
View Article and Find Full Text PDFFront Allergy
December 2024
Department of Otorhinolarynogology and Head/Neck Surgery, Amsterdam University Medical Centres, Location AMC, University of Amsterdam, Amsterdam, Netherlands.
The European Forum for Research and Education in Allergy and Airways diseases (EUFOREA) organized the first European Biologic Training Course (EBTC) in Brussels on 1st March 2024. The aim of this hybrid EBTC including both face-to-face and web-based participation was to address the educational needs of physicians dealing with asthma and Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) on the clinically relevant aspects of diagnosing and treatment with biologics. EUFOREA is an international non-for-profit organization forming an alliance of all stakeholders dedicated to reducing the prevalence and burden of chronic respiratory diseases through the implementation of optimal patient care via educational, research, and advocacy activities.
View Article and Find Full Text PDFHealth Expect
December 2024
Faculty of Health Sciences, Oslo Metropolitan University, OsloMet, Oslo, Norway.
Background: User organizations for people with disabilities in Norway work for social equality and participation, and quality of health services for people with disabilities, chronic illnesses and reduced functional capacity. Consideration of the experiences from user representatives is necessary when determining the quality and appropriateness of the rehabilitation services. Rehabilitation services constitute the provision and delivery of intangible products to maintain or improve functioning in individual patients or patient groups.
View Article and Find Full Text PDFSoc Sci Med
December 2024
Institute of Philosophy and Sociology, Polish Academy of Sciences, Nowy Świat 72, 00-330, Warsaw, Poland. Electronic address:
Rare diseases have had a special status within European Union (EU) health policy since the late 1990s. According to key EU legal documents, rare disease patients are entitled to the same good quality care as others. These individuals are particularly vulnerable due to the "low prevalence" and "uniqueness" of their disease.
View Article and Find Full Text PDFPatient Educ Couns
December 2024
Department of Pediatrics and Neonatology, OLVG, Amsterdam, the Netherlands; Amsterdam UMC, University of Amsterdam, Vrije Universiteit, Emma Children's Hospital, Amsterdam, the Netherlands.
Objective: To examine the effects of clinicians' provision of (un)reasonable arguments on parent-related outcomes in neonatal (intensive) care (NICU), starting from the NICU Communication Framework.
Methods: A video-vignette experiment, in which we systematically varied clinicians' use of (reasonable, unreasonable, no) argumentation across two non-acute and two acute decision-making scenarios (3×4 design). Reasonable arguments were medically appropriate and constructive reasons to support the treatment plan, as defined by an expert panel.
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