Results 41 to 50 of about 305,928 (310)

caregiver-guide-nov2018-web – Supplemental material for Development and Implementation of the Family Caregiver Decision Guide

, 2019
Supplemental material, caregiver-guide-nov2018-web for Development and Implementation of the Family Caregiver Decision Guide by Carole A. Robinson, Joan L.
Barbara Pesut (6736079), Janelle Zerr (7905062), Carole A. Robinson (5991866), Joan L. Bottorff (7905059)   +3 more
core   +1 more source

Evaluation of Digital Technologies for Home‐Based Assessment in People With Amyotrophic Lateral Sclerosis

Annals of Clinical and Translational Neurology, EarlyView.
ABSTRACT Objective Digital technologies hold promise for transforming healthcare by enhancing personalized treatments and offer valuable opportunities to improve patient care. Here, we evaluated several novel, self‐administered, home‐based, digital endpoints for their association with corresponding conventional standard clinical measures (primary) in ...
Arne Mueller, Vanessa Vallejo, Mónica Povedano Panadés, Orla Hardiman, Véronique Danel‐Brunaud, Senda Ajroud‐Driss, Philippe Couratier, Jeremy Shefner, Anna Gokey, Mike DiCesare, Erin Lennox, Jens Praestgaard, Lucie Brujin, Peggy Allred, Ram Miller   +14 more
wiley   +1 more source

Establishing a core outcome set for creatine transporter deficiency and guanidinoacetate methyltransferase deficiency

Orphanet Journal of Rare Diseases
Background Creatine transporter (CTD) and guanidinoacetate methyltransferase (GAMT) deficiencies are rare inborn errors of creatine metabolism, resulting in cerebral creatine deficiency.
Zahra Nasseri Moghaddam, Emily K. Reinhardt, Audrey Thurm, Beth K. Potter, Maureen Smith, Celeste Graham, Beth H. Tiller, Steven A. Baker, Deborah A. Bilder, Regina Bogar, Jacobus Britz, Rachel Cafferty, Daniel P. Coller, Ton J. DeGrauw, Vicky Hall, Gerald S. Lipshutz, Nicola Longo, Saadet Mercimek-Andrews, Judith S. Miller, Marzia Pasquali, Gajja S. Salomons, Andreas Schulze, Celine P. Wheaton, Kayla F. Williams, Sarah P. Young, Jasmine Li, Sofia Balog, Theresa Selucky, Sylvia Stöckler-Ipsiroglu, Heidi Wallis   +29 more
doaj   +1 more source

The Assessment of Caregiver Burden in Caregivers of Hemodialysis Patients [PDF]

Materia Socio Medica, 2015
Chronic renal failure is among the chronic disease which due to persistence of the disease and long treatment process has various effects on the physiological, psychological, functional ability, lifestyle changes, and independence status of the patient and his family. This may result in the burden feeling in caregivers.
Mashayekhi, Fatemeh, Pilevarzadeh, Motahareh, Rafati, Foozieh   +2 more
openaire   +2 more sources

Unraveling 4‐Phenylbutyrate's Therapeutic Role in SLC6A1 Disorders: Pharmacochaperoning Over HDAC Inhibition

Annals of Clinical and Translational Neurology, EarlyView.
ABSTRACT Objective Variants in SLC6A1, encoding the GABA transporter 1 (GAT‐1), cause epilepsy, autism spectrum disorder, and developmental delay via loss of GABA uptake, impaired trafficking, and ER retention. We previously found that 4‐Phenylbutyrate (PBA), an FDA‐approved drug, restores GABA uptake and reduces seizures in SLC6A1‐related disorders ...
Melissa B. DeLeeuw, Karishma Randhave, Ekta Anand, Ziang (Debbie) Song, Wangzhen Shen, Jing‐Qiong Kang   +5 more
wiley   +1 more source

Identifying commonalities and differences between EHR representations of PASC and ME/CFS in the RECOVER EHR cohort

Communications Medicine
Background Shared symptoms and biological abnormalities between post-acute sequelae of SARS-CoV-2 infection (PASC) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) could suggest common pathophysiological bases and would support coordinated
John P. Powers, Tomas J. McIntee, Abhishek Bhatia, Charisse R. Madlock-Brown, Jaime Seltzer, Anisha Sekar, Nita Jain, Mady Hornig, Elle Seibert, Peter J. Leese, Melissa Haendel, Richard Moffitt, Emily R. Pfaff, On behalf of the N3C Consortium and RECOVER-EHR   +13 more
doaj   +1 more source

Onasemnogene Abeparvovec in Patients With SMA: Interim Results of the RESTORE Registry in Japan

Annals of Clinical and Translational Neurology, EarlyView.
ABSTRACT Objective There are limited real‐world data regarding the safety and effectiveness of onasemnogene abeparvovec (OA; Zolgensma) infusion, a one‐time gene replacement therapy, for Japanese patients with spinal muscular atrophy (SMA). We aimed to improve understanding of the real‐world outcomes for OA in Japan.
Kayoko Saito, Kamal Benguerba, Ken Tsuchida, Kazushige Yazawa, Isao Tsumiyama, Hiromitsu Kayama, Sandra P. Reyna, Farid Khan, Richard S. Finkel   +8 more
wiley   +1 more source

A Qualitative Study of Patient and Caregiver Perspectives on Locally Advanced Head and Neck Cancer in the United States

Oncology and Therapy
Introduction Locally advanced head and neck squamous cell carcinoma (LA-HNSCC) has major physical and psychosocial burdens. Although treatment challenges are well recognized, few studies have explored the full LA-HNSCC experience from first symptoms ...
Esther Yu, Veronica Ashton, OluYemisi Falope, Toby Hanna, Teresa Kessell, Matt Scott, Denise D’Andrea, Maureen Tucker O’Malley, Rebecca Genin   +8 more
doaj   +1 more source

Effects of the caregiver burden perceived by caregivers of patients with neurological disorders on caregiver wellbeing and caregiver stress

Perspectives in Psychiatric Care, 2019
The present study was conducted to determine the effects of the caregiver burden perceived by caregivers of patients with neurological disorders on caregiver wellbeing and stress.The study was designed as a descriptive, cross-sectional, and correlational study.In the study, it was determined that the care burden is related to a caregiver's wellbeing ...
Fatma Özkan Tuncay, Tülay Kars Fertelli   +1 more
openaire   +3 more sources

The role of the caregiver in pain management in cancer patients

, 2023
openLa tesi spiegherà cosa sono le cure palliative domiciliari e qual è il ruolo del caregiver nell'assistenza del paziente oncologico a domicilio, si pone come ipotesi il fatto che il caregiver riesca a gestire il paziente a domicilio in autonomia o ...
ALUNNO ANGELETTI, DAVIDE
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