Results 31 to 40 of about 801,734 (267)

Caregivers' assessment of meaningful and relevant clinical outcome assessments for Sanfilippo syndrome

Journal of Patient-Reported Outcomes, 2022
Objectives Sanfilippo syndrome is a rare multisystem disease with no approved treatments. This study explores caregiver perspectives on the most impactful symptoms and patient-relevant clinical outcomes assessments.
Katherine Ackerman Porter, Cara O’Neill, Elise Drake, Sara M. Andrews, Kathleen Delaney, Samantha Parker, Maria L. Escolar, Stacey Montgomery, William Moon, Carolyn Worrall, Holly L. Peay   +10 more
doaj   +1 more source

Prevalence and Trajectory of Household Material Hardship Among Children With Advanced Cancer

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background/Objectives Families of children with advanced cancer living in poverty experience inferior outcomes including poor parent mental health and worse child quality of life. Household material hardship (HMH: food, housing, transportation, and/or utility insecurity) is a modifiable poverty exposure—and potential intervention target—that ...
Sarah Wright, Morgan A. Paul, Selena Murcia Mendez, Emily Jones, Lucille Lokko, Chelsea Heneghan, Nicholas Purol, Morgan Arnold, Rahela Aziz‐Bose, Colleen A. Kelly, Sandi L. Pruitt, Joanne Wolfe, Kira Bona, Puja J. Umaretiya   +13 more
wiley   +1 more source

“Who’s got the infants in mind?” A qualitative exploration of the barriers and enablers to commissioning parent-infant relationship services in England

BMC Health Services Research
Background The earliest relationships between babies and their caregivers can act as a risk factor for social and emotional wellbeing in infancy and impact on later development.
Lorraine McSweeney, Karen Bateson, Wook Hamilton, Bronia Arnott   +3 more
doaj   +1 more source

Positive or Negative and General or Differentiated Effect? Correlation between Parental Involvement and Student Achievement

Education Sciences
Parents can have a significant impact on student progress, but it is unclear whether generally influential forms of parental involvement can be identified or if they have a differential impact.
Katinka Bacskai, Emese Alter, Beáta Andrea Dan, Krisztina Vályogos, Gabriella Pusztai   +4 more
doaj   +1 more source

Financial Burden Associated With Hospitalisation Among Families of Childhood Brain Tumours in Australia

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Families of children with cancer experience significant financial strain, even with universal healthcare. Indirect costs, such as productivity losses and non‐medical expenses, are rarely included in economic evaluations, and little is known about how effectively financial aid programmes alleviate this burden. Childhood brain tumours
Megumi Lim, Natalie Bradford, David Brain, Sameera Senanayake, Sanjeewa Kularatna, Kate Young, Christine Cashion, Tim Hassall, Susanna Cramb   +8 more
wiley   +1 more source

Designing a Board Game to Expand Knowledge About Parental Involvement in Teacher Education

Education Sciences
Research highlights a growing demand for active, experiential learning methods in higher education, especially in teacher education. While the benefits of parental involvement (PI) are well-documented, Hungary lacks tools to effectively prepare teacher ...
Zsófia Kocsis, Zsolt Csák, Dániel Bodnár, Gabriella Pusztai   +3 more
doaj   +1 more source

Priorities when deciding on participation in early-phase gene therapy trials for Duchenne muscular dystrophy: a best–worst scaling experiment in caregivers and adult patients

Orphanet Journal of Rare Diseases, 2019
Purpose Several gene therapy trials for Duchenne muscular dystrophy initiated in 2018. Trial decision making is complicated by non-curative, time-limited benefits; the progressive, fatal course; and high unmet needs.
Ryan S. Paquin, Ryan Fischer, Carol Mansfield, Brennan Mange, Katherine Beaverson, Annie Ganot, Amy Strong Martin, Carl Morris, Colin Rensch, Valeria Ricotti, Leo J. Russo, Alesia Sadosky, Edward C. Smith, Holly L. Peay   +13 more
doaj   +1 more source

The Fate (Outcome) of Clinically Apparent Single Lesion and Oligofocal Nephroblastomatosis Treated According to SIOP/GPOH Protocols for Wilms Tumor

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background The management of clinically apparent single lesions or oligofocal nephroblastomatosis, a facultative precursor of nephroblastoma, remains debated. Methods We retrospectively analyzed 37 patients with clinically apparent single or oligofocal nephroblastomatosis (two to three lesions per kidney) among 2347 patients registered between
Nils Welter, Jens‐Peter Schenk, Jenny Wegert, Manfred Gessler, Leo Kager, Stefan Wagenpfeil, Marina Müller, Jean‐Michel Wolff, Joerg Fuchs, Steven W. Warmann, Clemens‐Magnus Meier, Jochen Hubertus, Christian Rübe, Christian Vokuhl, Patrick Melchior, Lena Tschirner, Norbert Graf, Rhoikos Furtwängler   +17 more
wiley   +1 more source

Determining soil particle-size distribution from infrared spectra using machine learning predictions: Methodology and modeling.

PLoS ONE, 2021
Accuracy of infrared (IR) models to measure soil particle-size distribution (PSD) depends on soil preparation, methodology (sedimentation, laser), settling times and relevant soil features.
Elizabeth Jeanne Parent, Serge-Étienne Parent, Léon Etienne Parent   +2 more
doaj   +1 more source

Types of Fathers’ Home-based and School-based Involvement in a Hungarian Interview Study

Central European Journal of Educational Research, 2023
This study explores the ways that Hungarian fathers are involved, at home and at school, in their children’s development and achievement. It also identifies the types of fathers that emerge based on this involvement.
Zsolt Csák
doaj   +1 more source