Results 31 to 40 of about 1,003,877 (262)

Unheard and Under‐Supported: Health‐Related Quality of Life in Children, Adolescents, and Young Adults With Sickle Cell Disease

Pediatric Blood &Cancer, EarlyView.
Abstract Background Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy affecting millions of individuals worldwide. The clinical expression and psychosocial burden of SCD vary widely across geographical, cultural, and healthcare system contexts, underscoring the need for setting‐specific approaches to assessment.
Desiré Fantasia, Giulia Reggiani, Elizabeth J. Maran, Maria Elisa Delle Fave, Ilaria Baido, Anna Chiara Frigo, Maria Paola Boaro, Raffaella Colombatti   +7 more
wiley   +1 more source

Results of the Childhood Cancer and Leukaemia Group's United Kingdom Relapsed Wilms Tumour Trial

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background The United Kingdom relapsed Wilms tumour (UKW‐R) trial aimed to improve the historically low survival rates after relapse of Wilms tumour (WT) through a prospective national risk‐stratified protocol. The trial also evaluated efficacy and toxicity of high‐dose melphalan.
Sucheta J. Vaidya, Veronica Moroz, Juliet Hale, Vesna Pavasovic, Rachel Hobson, Patricia Sartori, Daniel Saunders, Mark Powis, Gordan M. Vujanic, Stephen Baker, Kathy Pritchard‐Jones   +10 more
wiley   +1 more source

The value of experts by experience in social domain supervision in the Netherlands: results from a ‘mystery guests’ project

BMC Health Services Research
Background User involvement and participation in the supervision of the quality of care is an important topic for many healthcare inspectorates. It offers regulators an additional view on quality, increases the legitimacy and accountability of the ...
Sophia M. Kleefstra, Brenda J.M. Frederiks, Adriënne Tingen, Petra G.J. Reulings   +3 more
doaj   +1 more source

Exploring Preferences for a Digital Single‐Session Intervention for Adolescent Siblings of Youth With Cancer

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Introduction Adolescent siblings of children with cancer are at elevated risk for psychosocial problems. Unfortunately, various barriers such as limited family time and resources, conflicting schedules, and psychosocial staffing constraints at cancer centers hinder sibling access to support.
Christina M. Amaro, Sarah Silver, Prishi Patel, Meredith K. Reffner Collins, Kimberly S. Canter, Stephanie Fooks‐Parker, Michael Amylon, Shawna V. Hudson, Jessica L. Schleider, Melissa A. Alderfer, Katie A. Devine   +10 more
wiley   +1 more source

European Standard Clinical Practice Guideline and EXPeRT Recommendations for the Diagnosis and Management of Gastroenteropancreatic Neuroendocrine Neoplasms in Children and Adolescents

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Pediatric gastroenteropancreatic neuroendocrine neoplasms (GEP‐NENs) are extremely rare and clinically heterogeneous. Management has largely been extrapolated from adult practice. This European Standard Clinical Practice Guideline (ESCP), developed by the EXPeRT network in collaboration with adult NEN experts, provides (adult) evidence ...
Michaela Kuhlen, Calogero Virgone, Antje Redlich, Michael Abele, Ricardo Lopez‐Almaraz, Tal Ben‐Ami, Ewa Bien, Gianni Bisogno, Maja Mazic Cesen, Andrea Ferrari, Malgorzata A. Krawczyk, Yves Reguerre, Dominik T. Schneider, Ines B. Brecht, Charlotte Rigaud, Bilgehan Yalcin, Rainer Claus, Christian Vokuhl, Constantin Lapa, Jörg Fuchs, Segolene Hescot, Thomas Walter, Julien Hadoux, Daniel Orbach   +23 more
wiley   +1 more source

Putting the WHO Global Patient Safety Action Plan into Practice: Establishing the Austrian Patient Council as a Best Practice Example of Patient Involvement

Journal of Patient Experience
Including the patient perspective in health research is not merely beneficial but essential. The establishment of the Austrian Patient Council serves as a practical example of how this goal can be effectively realized.
Anna Teufel MA, Elisabeth Klager MSc, Hannah Hausegger Bsc, BA, Christiane Grill PhD, Benjamin Schuster BSc, Maria Kletecka-Pulker PhD, Eva Schaden MD   +6 more
doaj   +1 more source

Molecular Methods for Rare Hemoglobinopathy Cases: First Brazilian Report of Pediatric Siblings with Hb O‐Arab and Alpha‐Thalassemia

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Hemoglobinopathies are prevalent globally; diagnosis is complex in high genetic admixture populations like Brazil. We report, in two pediatric siblings, the first documented cases in Brazil of heterozygosity for hemoglobin (Hb) O‐Arab with coinheritance of α‐thalassemia (αα/−α4.2; −α3.7/−α4.2), resulting in microcytic and hypochromic anemia ...
Elisângela de Souza Miranda Muynarsk, Amanda Cristina Meneguetti Berti, Bárbara Braga Vieira Marques, Victoria Simões Bernardo, Flaviene Felix Torres, Ingrid Souza Dias, Vanessa da Silveira Ramos de Castro, Gabriela Alves Bernardino, Danilo Grünig Humberto da Silva, Edis Belini‐Júnior   +9 more
wiley   +1 more source

Health policy, patient‐centred care and clinical ethics

Journal of Evaluation in Clinical Practice, 2011
AbstractRationale, aims and objectives  Patient‐centred care has been a central part of US and UK health policy for over a decade, but, despite its importance, the policy literature often fails to provide an adequate theoretical justification for why and how we should value it.
McClimans, L, Dunn, M, Slowther, A
openaire   +3 more sources

Criterion‐Related Validity of the Neuropsychological Quick Assessment for Screening Cognitive, Motor, and Behavioral Impairments in Patients With Pediatric Brain Tumors: An Observational Pilot Study

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Neuropsychological complications may impair the qualitative prognosis of patients with pediatric brain tumors. However, multifaceted evaluations cannot be conducted in all patients because they are time consuming and burdensome for patients.
Ami Tabata, Keita Ueda, Tsukasa Ueno, Katsutsugu Umeda, Kentaro Ueno, Kanade Tanaka, Noyuri Nishida, Rie Yamawaki, Megumi Nukui, Yoshiki Arakawa   +9 more
wiley   +1 more source

Ethics in Patient Care, Vol 10, Issue 3

Bangladesh Journal of Bioethics
Good care is the reflection of care ethics. To improve the quality of care, moral behavior is needed in addition to law and regulation. Personal involvement and motivation of care are important elements of good care.
Shamima Parvin Lasker
doaj   +1 more source