Results 111 to 120 of about 975,488 (355)

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

Pediatric 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, Kyle Kemp, Perri Tutelman, Sharon H. J. Hou, Paul Fairie, Maria Santana, Gregory M. T. Guilcher, Taryn Fay‐McClymont, Glenda Bendiak, Wendy Pelletier, Nicola Wright, Fiona Schulte   +11 more
wiley   +1 more source

'Slow co-production’ for deeper patient involvement in health care [PDF]

"Slow co-production", achieved by involving patients in in-depth research, can help deepen patient involvement in health care. In this case study, the authors describe how slow co-production offers a specific and mutually beneficial form of patient and ...
Marston, Cicely, Miles, Sam, Renedo, Alicia   +2 more
core   +1 more source

Developing the infrastructure for patient review in academic journals [PDF]

, 2018
Peer review is a well-established part of academic publishing. Its function is to assess the quality of a manuscript before publication in a journal. Research involvement and Engagement is the world’s first co-produced journal dedicated to developing the
Flemyng, Ella, Staniszewska, Sophie, Stephens, Richard   +2 more
core   +1 more source

Serological Benefit of SARS‐CoV‐2 Vaccination Relative to Infection in Children With Acute Lymphoblastic Leukemia

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Children with acute lymphoblastic leukemia (ALL) are at risk of severe outcomes from SARS‐CoV‐2 (SCV2). In the post‐pandemic context, where most children have been infected with SCV2, there are limited data on whether vaccination remains beneficial in children with ALL.
Janna R. Shapiro, Freda Qi, Karen Colwill, Alina D. Dorogy, Ying Liu, Michelle Science, Anne‐Claude Gingras, James M. Rini, Sumit Gupta, Sarah Alexander, Shelly Bolotin, Tania H. Watts   +11 more
wiley   +1 more source

Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on

Research Involvement and Engagement
ALL_EARS@UoS is a patient and public involvement and engagement (PPIE) group for people with lived experience of hearing loss. The purpose of the group is to share experiences of hearing loss and hearing healthcare, inform research and improve services ...
K. Hough, M. Grasmeder, H. Parsons, W. Jones, Sarah Smith, Chris Satchwell, Ian Hobday, Sarah Taylor, T. Newman   +8 more
semanticscholar   +1 more source

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

Pediatric 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, Veerain Gupta, Nicholas J. Clark, Vijay Rings, Lauren E. Corona, Douglass B. Clayton, Daniel J. Benedetti   +6 more
wiley   +1 more source

Service user reflections on the impact of involvement in research [PDF]

, 2018
Background : Reports about the impact of patient and public involvement in research can be improved by involving patients and research staff more collaboratively to co-produce instruments to measure their involvement.
Eltringham, Sabrina A., Franklin, Sue, Gordon, Jim   +2 more
core   +1 more source

Patient and public involvement and engagement in the development of innovative patient-centric early phase dose-finding trial designs

Research Involvement and Engagement
In light of the FDA’s Project Optimus initiative, there is fresh interest in leveraging Patient-reported Outcome (PRO) data to enhance the assessment of tolerability for investigational therapies within early phase dose-finding oncology trials. Typically,
E. Alger, Mary Van Zyl, O. Aiyegbusi, D. Chuter, Lizzie Dean, A. Minchom, C. Yap   +6 more
semanticscholar   +1 more source

From tokenism to empowerment: progressing patient and public involvement in healthcare improvement

BMJ Quality & Safety, 2016
Background There have been repeated calls to better involve patients and the public and to place them at the centre of healthcare. Serious clinical and service failings in the UK and internationally increase the urgency and importance of addressing this ...
J. Ocloo, R. Matthews
semanticscholar   +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

Pediatric 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, Ji Yun Tark, Tiffany M. Chambers, Tania A. Desrosiers, Michael E. Scheurer, Charles Shumate, Wendy N. Nembhard, Mahsa M. Yazdy, Eirini Nestoridi, Amanda E. Janitz, Jean Paul Tanner, Russell S. Kirby, Jason L. Salemi, Yao Yu, Chad D. Huff, Sharon E. Plon, Philip J. Lupo, Jeremy M. Schraw   +17 more
wiley   +1 more source