Results 71 to 80 of about 2,568,476 (309)

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

Heterogeneity in the Global Practice of Central Nervous System Staging in Pediatric Acute Lymphoblastic Leukemia

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Central nervous system (CNS) involvement in childhood acute lymphoblastic leukemia (ALL) is assessed by cell counting and cytomorphology from cerebrospinal fluid (CSF) and is used for treatment stratification worldwide. The ratio of “CNS2” patients in clinical trials ranges from 3% to 40%, with unclear prognostic significance ...
Laura Almási, Bernadett Borbála Huszti, Gábor Barna, Marko Kavcic, Janez Jazbec, Lennart Lenk, Vera Münch, Sophia Polychronopoulou, Ágnes Márk, Maria Thastrup, Lüder H. Meyer, Kjeld Schmiegelow, Cornelia Eckert, Christina Halsey, Dániel J. Erdélyi   +14 more
wiley   +1 more source

Patient-reported outcome measures for primary hyperparathyroidism: a systematic review of measurement properties

Health and Quality of Life Outcomes
Background The quality of patient-reported outcome measures (PROMs) used to assess the outcomes of primary hyperparathyroidism (PHPT), a common endocrine disorder that can negatively affect patients’ health-related quality of life due to chronic symptoms,
George Liang, Manraj N. Kaur, Carrie G. Wade, Maria O. Edelen, David W. Bates, Andrea L. Pusic, Jason B. Liu   +6 more
doaj   +1 more source

Emapalumab for Immune Effector Cell‐Associated Hemophagocytic Lymphohistiocytosis‐Like Syndrome Following CD19‐Directed CAR‐T in Two Patients With B‐ALL: Clinical and Biomarker Correlates

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Immune effector cell‐associated hemophagocytic lymphohistiocytosis‐like syndrome (IEC‐HS) is a life‐threatening hyperinflammatory toxicity distinct from cytokine release syndrome (CRS) and neurotoxicity following chimeric antigen receptor T‐cell (CAR‐T) therapy. In a single‐institution retrospective cohort of pediatric and young adult patients
Thomas J. Galletta, Jeremy D. Rubinstein, Christopher E. Dandoy, Ruby Khoury, Angela Faulhaber, Christine L. Phillips, Christa Krupski   +6 more
wiley   +1 more source

Content validity and meaningful change for the FACIT-Fatigue scale in warm autoimmune hemolytic anemia: results from qualitative interview studies with patients

Journal of Patient-Reported Outcomes
Purpose Warm autoimmune hemolytic anemia (wAIHA) is a rare disorder characterized by premature destruction of red blood cells (hemolysis) and fatigue that affects patients’ health-related quality of life.
Sheryl Pease, Rikki Mangrum, Karolina Schantz, Christina Slota, Lindsey Rubin, Susan Martin, Cathye Shu, Kayla Scippa   +7 more
doaj   +1 more source

The Role of Hematopoietic Cell Transplantation in Ataxia‐Telangiectasia

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Ataxia‐telangiectasia (A‐T) is a DNA repair disorder characterized by neurodegeneration, immunodeficiency, and cancer predisposition. Hematopoietic cell transplantation (HCT) is an established therapy in related disorders such as Fanconi anemia (FA) and Nijmegen breakage syndrome (NBS), but its role in A‐T is unclear.
Laila Alkhouli, Seth Rotz, Masatoshi Takagi, Richa Sharma   +3 more
wiley   +1 more source

An electronic patient-reported outcome created based on my needs is worth using : an explorative qualitative study investigating young people's opinions for a health assessment tool

, 2022
Background Young people in different healthcare settings are positive about using electronic patient-reported outcomes (ePROs), which are meant to increase the effectiveness and safety of interventions from the patient's perspective.
Mattebo, Magdalena,, Thors Adolfsson, Eva, Adolfsson, Eva Thors,, Lostelius, Petra V., Söderlund, Anne,, Soderlund, Anne, Lostelius, Petra V.,, Mattebo, Magdalena, Lostelius, Petra,, Revenäs, Åsa,, Thors Adolfsson, Eva,, Revenas, Asa   +11 more
core   +1 more source

Using patient-reported outcome measures to assess psychological well-being in a non-representative US general population during the COVID-19 pandemic

Journal of Patient-Reported Outcomes, 2022
Purpose The impact of the COVID-19 pandemic on psychological well-being will likely be long-lasting. Efforts directed towards monitoring the onset and progression of distress and mental health disorders are needed to identify and prioritize at-risk ...
Manraj N. Kaur, Elena Tsangaris, Tanujit Dey, Shelby Deibert, Janina Kueper, Maria Edelen, Andrea L. Pusic   +6 more
doaj   +1 more source

Patient-reported outcomes in psychiatry

Dialogues in Clinical Neuroscience, 2014
The recent trend for recognizing the need that patients actively participate in the assessment of the outcome of treatment is a welcome development, not only because it adds valuable data, but also because its recognition of the partnership role that the patients should have in research on outcome of mental illness.
openaire   +3 more sources

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