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1.
J Pediatr Hematol Oncol ; 46(6): e466-e471, 2024 Aug 01.
Article de Anglais | MEDLINE | ID: mdl-39051640

RÉSUMÉ

OBJECTIVE: The aim is to identify preventable cause for hospital readmissions during induction and implement interventions to decreased preventable treatment-associated complications. BACKGROUND: Multiple factors contribute to patients with acute lymphoblastic leukemia (ALL) requiring readmissions during induction. MATERIALS AND METHODS: A dashboard monitored features of newly diagnosed patients with ALL. Readmission causes were stratified as preventable, possibly preventable, or unpreventable. A discharge checklist, including standardized education, and change of discharge date were implemented. RESULTS: Initially, there were 57 hospital readmissions of 98 patients (9 intensive care unit admissions and 2 deaths). Sixteen preventable (28.1%) and 32 unpreventable (56.1%) readmissions. After the interventions were initiated, including improved education, discharge checklist utilization, and standardized discharge date, there were 23 readmissions (78.3% were unpreventable, 6 intensive care unit admissions). CONCLUSION: Intervention implementation reduced readmission rates of induction patients with ALL by 20%.


Sujet(s)
Liste de contrôle , Sortie du patient , Réadmission du patient , Leucémie-lymphome lymphoblastique à précurseurs B et T , Humains , Réadmission du patient/statistiques et données numériques , Enfant , Leucémie-lymphome lymphoblastique à précurseurs B et T/traitement médicamenteux , Leucémie-lymphome lymphoblastique à précurseurs B et T/thérapie , Mâle , Femelle , Enfant d'âge préscolaire , Adolescent , Éducation du patient comme sujet/méthodes , Nourrisson , Chimiothérapie d'induction/méthodes
2.
Genet Med ; 25(12): 100982, 2023 Dec.
Article de Anglais | MEDLINE | ID: mdl-37724515

RÉSUMÉ

PURPOSE: Shared decision making manages genomic uncertainty by integrating molecular and clinical uncertainties with patient values to craft a person-centered management plan. Laboratories seek genomic report consistency, agnostic to clinical context. Molecular reports often mask laboratory-managed uncertainties from clinical decision making. Better integration of these uncertainty management strategies requires a nuanced understanding of patients' perceptions and reactions to test uncertainties. We explored patients' tolerance to variant uncertainty in 3 parameters: (1) relative causal significance, (2) risk accuracy, and (3) classification validity. METHOD: Deliberative forums were undertaken with 18 patients with predictive testing experience. Uncertainty deliberations were elicited for each parameter. A thematic framework was first developed, and then mapped to whether they justified tolerance to more or less parameter-specific uncertainty. RESULTS: Six identified themes mapped to clinical and personal domains. These domains generated opposing forces when calibrating uncertainty. Personal themes justified tolerance of higher uncertainty and clinical themes lower uncertainty. Decision making in uncertainty focused on reducing management regret. Open communication increased tolerance of classification validity and risk accuracy uncertainty. Using these data, we have developed a nascent clinical algorithm integrating molecular uncertainty with clinical context through a targeted communication framework. CONCLUSION: Maximizing test utility necessitates context-specific recalibration of uncertainty management and communication.


Sujet(s)
Communication , Prise de décision , Humains , Incertitude , Prise de décision clinique , Émotions
4.
J Pediatr Hematol Oncol ; 44(7): 388-392, 2022 10 01.
Article de Anglais | MEDLINE | ID: mdl-35091512

RÉSUMÉ

PURPOSE: Adolescent and young adult (AYA) cancer survivors experience treatment-related late effects so guidelines recommend providing a treatment summary, yearly follow-up, and risk-adapted testing. AYA survivors' knowledge of surveillance follow-up was studied. RESULTS: Survey responses for 73 AYAs were stratified: low (0 to 1 correct; n=18; 24.7%) versus high knowledge (2 to 4 correct; n=55; 75.3%) of their required testing. Patient-reported Outcomes Measurement Information System (PROMIS) scores fell within average ranges for participant age ( T -scores: 52.4 for physical function, 49.3 for anxiety, 46.3 for depression, and 44.7 for fatigue). Younger age at survivorship visit was a significant predictors of improved knowledge scores. CONCLUSION: Despite attendance at a survivorship clinic, minority of participants (9.5%) demonstrated complete knowledge of surveillance testing needs. Most survivors are aware of some of their surveillance needs. PROMIS scores were not associated with surveillance knowledge.


Sujet(s)
Survivants du cancer , Connaissances, attitudes et pratiques en santé , Adolescent , Anxiété/épidémiologie , Survivants du cancer/psychologie , Survivants du cancer/statistiques et données numériques , Humains , Tumeurs/épidémiologie , Tumeurs/thérapie , Jeune adulte
7.
J Pediatr Hematol Oncol ; 42(8): e775-e777, 2020 11.
Article de Anglais | MEDLINE | ID: mdl-32657857

RÉSUMÉ

BACKGROUND: Sickle cell disease is a homozygous hemoglobinopathy with vaso-occlusive complications secondary to abnormal sickling of red blood cells under stressful conditions such as hypoxia. Children with sickle cell trait have a heterozygous genetic state, typically without symptoms. OBSERVATION: An 8-year-old boy diagnosed with sickle cell trait was found to have multiple complications consistent with sickle cell disease, including pain crises, osteomyelitis, and priapism. Over a 6-year period, he underwent routine laboratory evaluations without a definitive diagnosis. The diagnosis of a compound heterozygous state of hemoglobin S/hemoglobin Quebec-Chori was eventually made on the basis of mass spectrometry and confirmed with hemoglobin subunit beta gene sequencing. CONCLUSION: Expanding diagnostic evaluation in patients with abnormal clinical presentations is vital to making the correct diagnosis and hence earlier institution of appropriate management of rare hemoglobinopathies.


Sujet(s)
Drépanocytose/diagnostic , Hémoglobine S/génétique , Hémoglobines anormales/génétique , Hétérozygote , Drépanocytose/génétique , Enfant , Humains , Mâle , Pronostic
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