Results 21 to 30 of about 2,539,328 (219)

Patient Experience of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP): A Qualitative Exploration of Signs, Symptoms, and Health-Related Quality of Life Impacts

Neurology and Therapy
Introduction Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare type of autoimmune neuropathy, characterized by signs of distal and proximal weakness of the upper and lower limbs, sensory dysfunction, absent or diminished tendon reflexes,
Anna Roberts, Natasha Griffiths, Kieran Thiara, Sophie Wallace, Alyson L. Young, Nicola Williamson, Adam Gater, Omar Saeed, Charles Minor, Natalia Hawken   +9 more
doaj   +1 more source

Delphi survey to inform patient-reported symptom monitoring after ovarian cancer treatment

Journal of Patient-Reported Outcomes, 2020
Background Increasing numbers of ovarian cancer patients are living longer and requiring regular follow-up to detect disease recurrence. New models of follow-up care are needed to meet the growing number and needs of this patient group. The potential for
Leanne Shearsmith, Fiona Kennedy, Oana C. Lindner, Galina Velikova   +3 more
doaj   +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

Justifying score interpretation thresholds for the Asthma Control Questionnaire (ACQ-5) in a contemporary asthma patient population

Journal of Patient-Reported Outcomes
Background The 5-item Asthma Control Questionnaire (ACQ-5) is widely used in clinical trials to assess the adequacy of asthma symptom control and any changes in asthma control as a result of treatment.
George Skingley, Mattea Orsini, Jessica Middlehurst, Jessica Flynn, James Brookes, Hermione Blackwood, Nathan Clarke, Rebecca Williams-Hall, Benoit Arnould, Renata Martincova, Jane Wells   +10 more
doaj   +1 more source

Understanding key symptoms, side effects, and impacts of HR+/HER2- advanced breast cancer: qualitative study findings

Journal of Patient-Reported Outcomes, 2019
Background Patients with breast cancer experience a variety of disease symptoms and treatment-related side effects that can adversely affect functioning. The breast cancer experience may differ across disease stages and biomarker subtypes.
Nina Galipeau, Brittany Klooster, Meaghan Krohe, Derek H. Tang, Dennis A. Revicki, David Cella   +5 more
doaj   +1 more source

Correlated physical and mental health composite scores for the RAND-36 and RAND-12 health surveys: can we keep them simple?

Health and Quality of Life Outcomes, 2022
Background The RAND-36 and RAND-12 (equivalent to versions 1 of the SF-36 Health Survey and SF-12 Health Survey, respectively) are widely used measures of health-related quality of life.
John Roger Andersen, Kyrre Breivik, Inger Elise Engelund, Marjolein M. Iversen, Jorunn Kirkeleit, Tone Merete Norekvål, Kjersti Oterhals, Anette Storesund   +7 more
doaj   +1 more source

Health‐Related Social Needs in Children With Sickle Cell Disease Are Associated With Worse Health‐Related Quality of Life

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Children with sickle cell disease (SCD) face multiple acute and chronic medical complications that may impact their quality of life as reported by patients themselves. Health‐related social needs (HRSNs), such as food and housing insecurity, are common in people with SCD, but the association between HRSNs and patient‐reported ...
Sarah J. Marks, Molly Sonenklar, Cerelia Donald, Cecelia Valrie, Wally Smith, India Sisler   +5 more
wiley   +1 more source

An observational study of the Patient-Centered Outcomes Research Institute’s switch from in-person to virtual research application review panels during the COVID-19 pandemic

Research Integrity and Peer Review
Background The Patient-Centered Outcomes Research Institute (PCORI) reviews research applications using a process that includes preliminary review by primary reviewers, followed by panel discussion where primary reviewers and other reviewers on the panel
Robin Bloodworth, Rachel Hemphill, Laura P. Forsythe, Carolyn Mohan, Esther C. Nolton, Ponta Abadi, Lisa J. Stewart, Krista P. Woodward   +7 more
doaj   +1 more source

Cup‐Like Nuclei Is a Hallmark of DUX4/ERG Acute Lymphoblastic Leukemia and Reveals Cytoplasmic Mitochondria Accumulation

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Cup‐like nuclei are a distinctive morphological feature observed in certain cases of acute lymphoblastic leukemia (ALL). We provide evidence that they characterize DUX4/ERG ALL independently of IKZF1 deletion and reveal marked mitochondrial accumulation in this ALL subset.
Chloé Arfeuille, Hugo Roux, Odile Fenneteau, Aurélie Caye‐Eude, Alexia Kinoo, Yoann Vial, André Baruchel, Marion Strullu, Elodie Lainey, Hélène Cavé   +9 more
wiley   +1 more source

Genomic Diversity and Clinical Variability in Pediatric Primary Cutaneous Anaplastic Large Cell Lymphoma: A Case Series

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Primary cutaneous anaplastic large cell lymphoma (pcALCL) is a rare pediatric CD30‐positive T‐cell lymphoproliferative disorder with an excellent prognosis, but its genomic drivers are poorly defined. We report three children with skin‐limited disease demonstrating striking molecular heterogeneity, including NPM::ALK, NUP214::FRK, and a novel ...
Shoshana Greenberger, Efrat Bar‐Ilan, Victoria Marcu, Evgeny Grishin, Rinat Yacobi, Aviv Barzilai, Hana Golan, Assaf Arie Barg   +7 more
wiley   +1 more source