This study validated the content of an instrument designed to assess the knowledge, involvement (attitudes) and management (practice) of dentists relative to sickle-cell disease (KAPD-SCD). The instrument consisted of five domains composed of a total of thirteen items: I. Dentist's self-assessment relative to sickle-cell disease; II. Dentist's knowledge of the repercussions of sickle-cell disease on the stomatognathic system; III. Dentist's knowledge of the complications of sickle-cell disease in the stomatognathic system; IV. Dentist's knowledge concerning the dental management of sickle-cell disease patients; and V. Dentist's involvement in an approach to sickle-cell disease. Twelve experts assigned scores to each item of the instrument. The criteria were clarity, understanding and appropriateness, leaving open fields for comments. Descriptive and content analyses of the data were made. Each expert analyzed 39 assessment units. The percentages considered for agreement were high (>80%), medium (70%-80%), or low (<70%), and each item was maintained or revised according to the percentage observed. There was high consensus in 74% of the assessment units (the corresponding items were maintained), medium consensus in 24% of them (the corresponding items were revised), and disagreement in 2% of them, namely as regards the "appropriateness" of item 5 ("Are there oral complications in sickle-cell disease?"), which was revised. The final version of the instrument had 16 items for different applications such as in the clinical care program, teaching program, or research program, with different cut-off scores for each application. In conclusion, the level of agreement among experts showed evidence of the content validity of the instrument.
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http://dx.doi.org/10.1590/1807-3107bor-2024.vol38.0026 | DOI Listing |
ACS Meas Sci Au
December 2024
Synthetic Molecule Analytical Chemistry, Genentech, 1 DNA Way, South San Francisco, California 94080, United States.
Small molecules and antibodies have dominated the pharmaceutical landscape for decades. However, limitations associated with therapeutic targets deemed "undruggable" and progress in biology and chemistry have led to the blossoming of drug modalities and therapeutic approaches. In 2023, a high number of 9 oligonucleotide and peptide products were approved by the Food and Drug Administration (FDA), accounting for 16% of all drugs approved.
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November 2023
University of California, San Francisco School of Nursing 2 Koret Way San Francisco, CA 94143, USA.
Background: Adolescents with sickle cell disease (SCD) face unique challenges, especially during the critical health care transition from pediatric to adult care. The purpose of this study was to gather the perspectives of adolescents living with SCD and to describe their self-care management experiences prior to their move into the adult health care system.
Methods: Guided by the Theory of Self-Care Management for Sickle Cell Disease, this qualitative descriptive study used semi-structured interviews with 11 adolescents with SCD (M = 16.
Health Care Transit
January 2024
Hemoglobinopathy Clinic, Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada.
Background: The transfer from paediatric to adult care presents a significant challenge for adolescents and young adults (AYA) with sickle cell disease (SCD). Disease self-management skills have been recognized as important mediators of poor health outcomes, but transition-related skills such as scheduling appointments and understanding the shift in health care responsibilities remain under taught in the healthcare system. The purpose of this quality improvement (QI) study was to (1) understand the areas of disease self-management that AYA patients felt underprepared for, and (2) design and evaluate an educational program addressing the top unmet skills.
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March 2024
Boston University Chobanian & Avedisian School of Medicine, Boston, MA.
Background: Transition in sickle cell disease (SCD) is associated with an alarming increase in acute care utilization, cost, and risk of early mortality. Effective transition preparation is crucial to address these issues. We established a multidisciplinary transition clinic at our urban SCD center in the fall of 2021.
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February 2024
Division of General Pediatrics, Zucker School of Medicine at Hofstra/Northwell, United States.
Background: Transition to adulthood is a vulnerable time for emerging adults (16-25 years of age) with sickle cell disease (SCD), as there is a seven-fold increase in mortality rates during the transition period. Emerging adults with SCD also have the highest rates of hospitalizations, emergency room visits, and hospital readmissions compared to other age groups. Community health worker (CHW) programs have been developed to address outcomes such as patient activation which includes an individual's knowledge, skill, and confidence for managing one's health and healthcare, quality of life, and healthcare utilization for patients with chronic illnesses.
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