Results 31 to 40 of about 429,577 (266)

Health‐Related Quality of Life and Symptom Severity Among Patients With PIK3CA‐Related Overgrowth Spectrum: A Mixed‐Methods Study to Understand Real‐World Experience With Alpelisib Treatment

open access: yesPediatric Blood &Cancer, EarlyView.
ABSTRACT Background PIK3CA‐related overgrowth spectrum (PROS) includes several rare overgrowth disorders resulting from somatic gain‐of‐function mutations in PIK3CA. Despite treatment advances, including the recent approval of alpelisib for PROS in the United States, literature detailing the patient experience with PROS is limited.
Vamsi Bollu   +8 more
wiley   +1 more source

Commentary: A lack of a comparator group makes it hard to be sure whether computerised medical record system implementation achieved a better or worse outcome

open access: yesJournal of Innovation in Health Informatics, 2016
None
Simon de Lusignan   +3 more
doaj   +1 more source

Clinical and Biological Features of Response in Resistant Neuroblastoma to 131I‐Metaiodobenzylguanidine Radiotherapy in the Anti‐GD2 Immunotherapy Era

open access: yesPediatric Blood &Cancer, EarlyView.
ABSTRACT Background 131I‐metaiodobenzylguanidine (131I‐MIBG) radiotherapy is a key treatment for relapsed and refractory (R/R) neuroblastoma (NB). Patients with R/R disease treated in the modern era are increasingly exposed to anti‐GD2 immunotherapy, which exerts selective pressure and may modify both tumor cell state and microenvironment.
Benjamin J. Lerman   +7 more
wiley   +1 more source

Hospitalization Through Families’ Eyes: Comparing Inpatient Care Quality for Children With Sickle Cell Disease and Cystic Fibrosis in Canada

open access: yesPediatric Blood &Cancer, EarlyView.
ABSTRACT Background Sickle cell disease (SCD) is a chronic, inherited hemoglobinopathy that requires frequent hospitalization for disease‐related complications. Canadian data on inpatient care is limited. This study compared caregiver‐reported hospital experiences of children with SCD to those with cystic fibrosis (CF), a chronic, autosomal recessive ...
Hailey M. Zwicker   +11 more
wiley   +1 more source

Expectations for the next generation of electronic patient records in primary care: a triangulated study

open access: yesJournal of Innovation in Health Informatics, 2008
Background Although primary care physicians are satisfied users of electronic patient records (EPRs) in Norway today, EPR systems may not have reached their full potential. We studied primary care physicians' needs and experiences in relation to EPRs and
Tom Christensen, Anders Grimsmo
doaj   +1 more source

Time Toxicity in Wilms Tumor: Quantifying the Burden of Healthcare Interaction in the First Year After Diagnosis

open access: yesPediatric Blood &Cancer, EarlyView.
ABSTRACT Background Wilms tumor (WT) treatment imposes a significant time burden on patients and their families. Time toxicity is a patient‐centered metric that quantifies the burden of healthcare interaction. We sought to define time toxicity in the first year after diagnosis of WT and hypothesized that it would increase as tumor stage and treatment ...
Caleb Q. Ashbrook   +6 more
wiley   +1 more source

Six strategies for electronic medical records systems [PDF]

open access: yesCommunications of the ACM, 2008
THE INSTITUTE OF MEDICINE (IOM)a in 19995 shocked the nation by reporting that as much as 98,000 people die in hospitals every year due to medical errors. These errors are also said to cost hospitals as much as $29 billion every year. Of the many reasons identified for the medical errors, one critical reason is the decentralized and fragmented nature ...
Venkatraman, Srinivasan   +3 more
openaire   +1 more source

Development of a web-based pharmaceutical care plan to facilitate collaboration between healthcare providers and patients

open access: yesJournal of Innovation in Health Informatics, 2014
Background To facilitate collaboration between different healthcare providers and to exchange patient data we developed a paper-based tool, which also enabled to plan interventions and follow-up activities: the PCP.
Marlies ME Geurts   +3 more
doaj   +1 more source

Increased Risk of Sarcomas in Children With Congenital Anomalies: Findings From the Genetic Overlap Between Anomalies and Cancer in Kids (GOBACK) Registry Linkage Study

open access: yesPediatric Blood &Cancer, EarlyView.
ABSTRACT Background Pediatric sarcomas are a heterogeneous group of tumors that contribute disproportionately to cancer mortality in children. Although congenital anomalies are among the strongest known risk factors for childhood cancer, the risk of specific sarcoma subtypes among affected individuals has not yet been thoroughly evaluated. Procedure We
Russ Wolters   +17 more
wiley   +1 more source

Supporting Survivor‐Centered Care Through Digital Health Integration

open access: yesPediatric Blood &Cancer, EarlyView.
ABSTRACT Survivors of childhood cancer face barriers to receiving guideline‐based, long‐term follow‐up care. Two digital tools, Passport for Care (PFC) and Cancer SurvivorLink (SurvivorLink), address complementary gaps by enabling tailored survivorship care plan (SCP) generation, updating, storage, and sharing.
Jordan G. Marchak   +15 more
wiley   +1 more source

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