O objetivo deste estudo foi a validação do conteúdo e a compreensibilidade do Material informativo a pacientes em tratamento quimioterápico e aos seus familiares. Para avaliar se as informações do material informativo sobre câncer, quimioterapia, cuidados com paciente, alimentação e medicação eram suficientemente esclarecedoras e claras, foram contatados 23 cuidadores principais de crianças com câncer. Os entrevistados responderam a um questionário contendo nove questões fechadas e uma aberta. A avaliação foi positiva e as informações foram consideradas esclarecedoras pela maioria dos participantes, dos quais alguns contribuíram com sugestões, que foram acrescentadas ao material. Após completa finalização, o material servirá como apoio aos pacientes com câncer e aos familiares. O intuito do material é melhorar a qualidade de assistência de enfermagem, pois acredita-se que, quando os responsáveis estão orientados sobre a maneira mais adequada de cuidar, a adesão do paciente ao tratamento aumenta, a informação os torna mais seguros, e colabora-se para o sucesso do tratamento.
Aos meus queridos amigos da enfermagem, companheiros de trabalho do ICESP (Instituto do Câncer do Estado de São Paulo), por compreenderem minhas ausências durante esse estudo. Ao Daniel, pelo companheirismo, disponibilidade e atenção sempre presentes.
RATIONALE: HAE is a rare, genetic disease that can cause recurrent angioedema attacks, significantly affecting patients' quality of life. Communication dynamics for patients and physicians regarding HAE and its overall impact was assessed in the US. METHODS: Following an Institutional Review Board-approved protocol, four sources of communication data were obtained, namely in-office conversations between adult patients with HAE and physicians, follow-up dictations with physicians, tele-depth interviews with patients and physicians, and publically available social media posts from Jan 2015-May 2017. Patient-physician dialogue dynamics were qualitatively assessed. Key communication elements and communication gaps were identified. RESULTS: Twenty five in-office conversations, 14 follow-up physician dictations and 17 tele-depth interviews with patients and physicians were collected. In interviews and online forums, patients frequently described the multifaceted burden of HAE whereas their physicians' conversations focused primarily on symptom frequency and severity. Patients highlighted difficulties they experience with HAE using repetition, minimizers, and metaphors, and utilized different descriptors for attacks that varied by swelling locations. In general, in-office conversations were patient-driven and lexicon from both parties centered on ''episodes'' and ''swelling''. Physicians reported inconsistences in quality of life discussions during visits. Physicians used intensifiers to emphasize necessity of having access to rescue medications, whereas prophylactic treatments were positioned as an option for patients with frequent episodes and laryngeal attacks. Patients shared different dimensions of their burden depending upon type of communication forum. CONCLUSIONS: The study findings show that the full impact of HAE is not consistently communicated between patients and physicians, possibly affecting their treatment plan.
RATIONALE: As there are limited publications on real-life use of omalizumab in chronic idiopathic urticaria in Canada, there is a need to generate data on its and characteristics of patients using it. The study aims to describe demographics and treatment patterns of patients to whom omalizumab was prescribed. METHODS: Following regulatory approval, a patient support program (PSP) was made available to all Canadian patients prescribed omalizumab. Baseline demographics and treatment information were collected for patients who provided consent, enrolled between August2014 and 15June2016; patient reported information was collected as of Nov2015. RESULTS: 1522 patients enrolled in the PSP received at least one dose of omalizumab (71% women; average age: 46). Most patients (73%) were prescribed omalizumab 300mg q4wks while 15% were prescribed 150mg q4wks; 12% of patients were treated with other dosing regimens. Treatment history was reported by 377 patients; 84% reported being treated with > _1 H1-antihistamine while 31% received montelukast. Prednisone was used in 20% of patients; use of cyclosporine was uncommon. Angioedema history was reported by 307 patients, 65% reported having a history of angioedema; 29% had not experienced angioedema; 6% did not know. Average omalizumab treatment persistency is 13 months. CONCLUSIONS: In a real-world Canadian setting, omalizumab is prescribed to a population comparable to that of the Phase 3 clinical program. Treatment history and history of angioedema were likely underestimated as data were patient reported and collected as of November 2015. There remains a need to further collect and disseminate data to understand the use of omalizumab in a real-world setting.
RATIONALE: Histamine regulates immune response and inflammation, and impairs the skin barrier dysfunction that initiates a clinical manifestation of eczema, and then atopic dermatitis (AD). Using skin prick tests (SPTs) to histamine as a marker of skin hypersensitivity mediated mast cells, we investigated whether parental allergic diseases affect skin hypersensitivity to histamine and skin diseases in their infants. METHODS: A total of 256 infant-parents pairs were enrolled in this cross-sectional study with self-writing questioners about parental and infantile eczema, AD, and other allergic diseases. SPTs to saline and histamine (1.0 mg/dl) were performed on the arms using a bifurcated needle. Wheal sizes were recorded at 15 minutes. Statistical analyses were performed by using Mann-whitney U test by STATA software. RESULTS: Among the infants (age 10.4 6 0.8 months; 124 males, 132 females), wheal sizes to histamine were significantly larger in infants with eczema than in those without eczema (4.4 6 2.0 mm vs. 3.6 6 1.9 mm; P 5 .04). In infants with maternal and paternal allergic diseases, wheal sizes to histamine were significantly larger in infants with eczema than in those without eczema (4.9 6 2.3 mm vs. 3.7 6 1.9 mm; P 5 .02, 4.8 6 2.1 mm vs. 3.6 6 1.7 mm; P5 .01, respectively). In infants without maternal and paternal allergic diseases, no significant difference in wheal sizes to histamine was between infants with and without eczema. CONCLUSIONS: Parental allergic diseases may effect skin hypersensitivity to histamine mediated mast cells or histamine receptors in their infants, and initiate eczema.
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