Results 41 to 50 of about 369,883 (247)

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

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

Shared decision making in head neck cancer

Oral Oncology Reports, 2023
Shared decision making (SDM) has been presented as an ethical framework for cancer care decision making. It is, however, difficult to apply and lacks practicality.
Shrikant B. Mali
doaj   +1 more source

Clinical Course and Impact of Breaks in Therapy for Children With Relapsed/Refractory Solid Tumors

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Introduction Pediatric relapsed or refractory (R/R) solid tumors carry a dismal prognosis, and postrelapse patient experiences are not well described. We present postrelapse outcomes, including number of R/R events and subsequent therapy regimens.
Matthew T. McEvoy, Elizabeth L. Seashore, W. Susan Cheng, Shondra Clay, Jessica A. Casas, Jennifer H. Foster   +5 more
wiley   +1 more source

Implementing Health‐Related Quality of Life Assessment in Pediatric Oncology: A Feasibility Study

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background There is growing interest in embedding health‐related quality of life (HRQoL) assessment and patient‐reported outcome measures (PROMs) within clinical cancer care. This study evaluated the feasibility, acceptability, and usability of implementing an electronic PROM (ePROM) platform to measure HRQoL in children with cancer ...
Mikaela Doig, Sophie Jessop, Jordan R. Hansford, Hien Le, Matthew O'Connor, Peter Gorayski, Andrew Cunningham, Amanda Hutchinson, Victoria Bedford, Eva Bezak, Nayana Parange, Kelly Skelton, Timothy Price, Michala Short   +13 more
wiley   +1 more source

From shared decision making to patient-centered decision making

Israel Journal of Health Policy Research, 2012
Shared decision making involving patients and physicians has gained adherents in Israel and other countries and has many virtues. This commentary argues that medical decision making should ideally be shaped by the particular needs and preferences of the ...
Fineberg Harvey V
doaj   +1 more source

Treatment Decision‐Making Roles and Preferences Among Adolescents and Young Adults With Cancer

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Decision‐making (DM) dynamics between adolescents and young adults (AYAs) with cancer, parents, and oncologists remain underexplored in diverse populations. We examined cancer treatment DM preferences among an ethnically and socioeconomically diverse group of AYAs and their parents.
Amanda M. Gutierrez, Jill O. Robinson, Wendy A. Allen‐Rhoades, Hadley S. Smith, Isabel Canfield, Rebecca L. Hsu, Sarah R. Scollon, Lauren R. Desrosiers‐Battu, Nicole M. Schneider, Frank Y. Lin, Donald Williams Parsons, Sharon E. Plon, Mary A. Majumder, Janet Malek, Amy L. McGuire   +14 more
wiley   +1 more source

Translation and cultural adaption of the control preference scale across various care settings in a Danish hospital

Journal of Patient-Reported Outcomes
Background In recent decades, there has been a growing emphasis on involving patients in healthcare decision-making, driven by political, ethical, and research considerations.
Bettina Mølri Knudsen, Karina Dahl Steffensen   +1 more
doaj   +1 more source

Parent Quality of Life at Two Years Following Their Child's Completion of Acute Lymphoblastic Leukemia Treatment

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Parents of children treated for acute lymphoblastic leukemia (ALL) often experience significant caregiver burden and disruption to their well‐being. While parent quality of life (QoL) during treatment is well characterized, little is known about outcomes during early survivorship.
Sara Dal Pra, Maria McCarthy, Michael Takagi, Cinzia De Luca   +3 more
wiley   +1 more source

From Paper to Pixels: Digital Transition of a Patient Decision Aid—A Pilot Study

Mayo Clinic Proceedings: Digital Health
Objective: To convert a generic paper-based patient decision aid (PtDA) into digital format and assess its usability through α and β testing, recognizing the growing role of digital health technologies in empowering patients in shared decision-making ...
Bettina Mølri Knudsen, MA, Karina Olling, BSN, Lisbeth Høilund Gamst, BSN, Charlotte Hald Fausbøll, BSN, Karina Dahl Steffensen, MD, PhD   +4 more
doaj   +1 more source