ABSTRACT
Sickle cell disease (SCD) is an inherited blood disorder that affects about 100,000 people in the U.S., primarily Blacks/African-Americans. A multitude of complications negatively impacts quality of life. Hydroxyurea has been FDA approved since 1998 as a disease-modifying therapy for SCD, but is underutilized. Negative and uninformed perceptions of hydroxyurea and barriers to its use hinder adherence and promotion of the medication. As the largest real-world study to date that assessed hydroxyurea use for children and adults with SCD, we gathered and analyzed perspectives of providers, individuals with SCD, and families. Participants provided information about socio-demographics, hospital and emergency admissions for pain, number of severe pain episodes interfering with daily activities, medication adherence, and barriers to hydroxyurea. Providers reported on indications for hydroxyurea, reasons not prescribed, and current laboratory values. We found that hydroxyurea use was reported in over half of eligible patients from this large geographic region in the U.S., representing a range of sickle cell specialty clinical settings and practices. Provider and patient/caregiver reports about hydroxyurea use were consistent with one another; adults 26 years and older were least likely to be on hydroxyurea; and the likelihood of being on hydroxyurea decreased with one or more barriers. Using the intentional and unintentional medication nonadherence framework, we found that, even for patients on hydroxyurea, challenges to taking the medicine at the right time and forgetting were crucial unintentional barriers to adherence. Intentional barriers such as worry about side effects and "tried and it did not work" were important barriers for young adults and adults. For providers, diagnoses other than HgbSS or HgbS-ß0 thalassemia were associated with lower odds of prescribing, consistent with evidence-based guidelines. Our results support strengthening provider understanding and confidence in implementing existing SCD guidelines, and the importance of shared decision making. Our findings can assist providers in understanding choices and decisions of families; guide individualized clinical discussions regarding hydroxyurea therapy; and help with developing tailored interventions to address barriers. Addressing barriers to hydroxyurea use can inform strategies to minimize similar barriers in the use of emerging and combination therapies for SCD.
ABSTRACT
BACKGROUND: Auscultation is a fundamental part of the physical examination, but its utility has been questioned due to the low inter-rater concordance. We therefore sought to evaluate the concordance of the discrimination of lung sound recordings between experienced physiotherapists. METHODS: Lung sound recordings were selected and validated by an expert panel when Fleiss κ concordance was > 0.75. Eleven recordings were played for subject recognition using a portable computer in their workplace. Results were analyzed using Fleiss κ when looking for concordance between physiotherapists. Univariate regression was performed to determine if there was an association with clinical training, years of experience, academic accomplishment, or university affiliation. RESULTS: Sixty-nine physiotherapists with a median of 4 years of working experience (interquartile range 2-6 y) completed the study. There was moderate concordance (κ = 0.562; 95% CI 0.462-0.605) for overall lung sound recording discrimination. For continuous and noncontinuous lung sound recordings, discrimination concordance was substantial (κ = 0.63 and κ = 0.76, respectively). A bivariate analysis revealed that years of experience presented an inverse association with stridor recognition. CONCLUSIONS: Concordance between physiotherapists in discriminating recorded lung sounds was moderate. The ability to recognize stridor was inversely associated with years of work experience.
Subject(s)
Auscultation , Physical Therapists , Tape Recording , Clinical Competence , Humans , Lung/physiology , Respiratory SoundsABSTRACT
El paciente oncológico, ya sea cursando una enfermedad hemato oncológica o una enfermedad oncológica de comportamiento y aspecto sólido, está expuesto a ciertas complicaciones cuando es sometido al tratamiento de la enfermedad ya sea mediante radioterapia o, ya sea, mediante quimioterapia, por lo que los médicos tratantes deben conocer los riesgos, beneficios y utilidad de ciertas conductas terapéuticas sin perder de vista el contexto y evolución de la enfermedad. Estas complicaciones muchas veces en carácter de urgencias pueden terminar con la vida del enfermo. Conociendo esto, las decisiones que rodean este tipo de enfermedad deben consensuarse, entenderse y ejecutarse de forma multidisciplinaria definiendo aspectos claros y concretos basados en una comunicación constantes y fluida entre nosotros, aquellos en que la familia y el paciente confían para que los cuidemos, y el entorno del enfermo. Siempre sentándonos, y tomados de la mano con el enfermo y su núcleo íntimo, intentando respondernos la siguiente pregunta; ¿La UCI es el mejor lugar para continuar los días?
The cancer patient, whether pursuing a hemato-oncological disease or oncology disease behavior and solid, is exposed to certain complications when subjected to treatment of disease by either radiotherapy or whether through chemotherapy, so that doctors traffickers should know the risks, benefits and usefulness of certain therapeutic approaches without losing sight of the context and evolution of the disease. Complications often in emergency nature that can end the patients life. Knowing this, the decisions surrounding this type of disease should be agreed, understood and implemented in a multidisciplinary defining clear and specific aspects based on a constant and fluid communication between us, those in which the family and the patients trust to care for, and environment of the patient. Whenever we sat down, and holding hands with the patient and his inner core, trying to answer us the following question; is the ICU the best place to go on?
