Results 51 to 60 of about 2,582,753 (309)

A generic and adaptable model of developing, implementing, and maintaining patient-reported outcomes in clinical practice – the AmbuFlex model

Journal of Patient-Reported Outcomes
Background Patient-reported outcomes (PROs) are aspects of health status reported directly by patients. Over the last decade, PROs have been increasingly used in clinical practice.
Liv Marit Valen Schougaard, Anne Jessen, Anne Treschow Phillipsen, Anke de Beijer, Camilla Buur Udbye Agesen, Helle Dahl Harbo, Jonas Hermann Schrøder, Kathrine Hønholt Carlson, Katja Kimose Sloth, Lene Bjerre Graakjaer, Louise Pape Larsen, Mette Roost, Nanna Toxvig Sørensen, Regine Grytnes, Sanne Degn Gjørup, Sidse Østergaard Olesen, Birgith Engelst Grove   +16 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

Results of a pilot feasibility randomised controlled trial exploring the use of an electronic patient-reported outcome measure in the management of UK patients with advanced chronic kidney disease

BMJ Open, 2022
Objectives The use of routine remote follow-up of patients with chronic kidney disease (CKD) is increasing exponentially. It has been suggested that online electronic patient-reported outcome measures (ePROMs) could be used in parallel, to facilitate ...
Paul Cockwell, Derek Kyte, Melanie Calvert, Louise J Jackson, Gary Price, Natalie J Ives, Jon Bishop, Mary Dutton, Elizabeth Brettell, Helen Eddington, Gabby Hadley, Stephanie Stringer, Rav Verdi, Judi Waters, Keeley Sharpe, Nicola Anderson, Andrew Bissell, Marie Chadburn, Elliot Forster, Sonia O'Brien, Adrian Wilcockson   +20 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

Development and validation of a new patient-reported outcome measure for patients with pressure ulcers: the PU-QOL instrument. [PDF]

, 2013
BACKGROUND: Patient-reported outcome (PRO) data are integral to patient care, policy decision making and healthcare delivery. PRO assessment in pressure ulcers is in its infancy, with few studies including PROs as study outcomes.
Gorecki, C, McGinnis, Elizabeth, Cano, S, Coleman, S, Briggs, Michelle; id_orcid, McGinnis, E, Wilson, L, Briggs, Michelle, Nelson, AE, Nelson, Andrea E, Cano, Stefan, Cano, S. J., Dealey, Carol, Dealey, C, Stubbs, N, Briggs, M, Nixon, J, Lamping, DL, Brown, Julia M., Lamping, D. L., Coleman, Susanne, Nixon, Jane, Lamping, Donna L., Brown, Julia M, Wilson, Lyn, Nelson, Andrea E.; id_orcid, Lamping, Donna L, Stubbs, Nikki, Gorecki, Claudia, Brown, JM   +29 more
core   +1 more source

Key considerations for digital decentralised clinical trials from a feasibility study assessing pacing interventions for long COVID

Scientific Reports
Post COVID-19 condition or long COVID is highly prevalent and often debilitating, with key symptoms including fatigue, breathlessness, and brain fog. There is currently a lack of evidence-based treatments for this highly complex syndrome. There is a need
Christel McMullan, Shamil Haroon, Grace Turner, Olalekan Lee Aiyegbusi, Anuradhaa Subramanian, Sarah E. Hughes, Sarah Flanagan, Krishnarajah Nirantharakumar, Elin Haf Davies, Chris Frost, Louise Jackson, Naijie Guan, Yvonne Alder, Amy Chong, Lewis Buckland, Felicity Jeyes, David Stanton, Melanie Calvert   +17 more
doaj   +1 more source

Global use of electronic patient-reported outcome systems in nephrology: a mixed methods study

BMJ Open, 2023
Objectives The use of electronic patient-reported outcome (ePRO) systems to support the management of patients with chronic kidney disease is increasing.
Paul Cockwell, Derek Kyte, Christel McMullan, Melanie Calvert, Olalekan Lee Aiyegbusi, Rav Verdi, Nicola Elizabeth Anderson   +6 more
doaj   +1 more source

Patient-reported outcome measurement [PDF]

Journal of the Royal Society of Medicine, 2010
Alan Maynard and Karen Bloor1 raise interesting questions, particularly in relation to breast cancer. One issue is that treatment-related toxicities may not become problematic for several years, particularly when radiotherapy is administered. Research so far seems to indicate that hypofractionation causes more long-term problems than hyperfractionation,
openaire   +2 more sources

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

Patient-reported outcome instruments used in immune-checkpoint inhibitor clinical trials in oncology: a systematic review [PDF]

, 2020
Context: Immune-checkpoint inhibitors (ICI) have shown significant benefits for overall survival across various cancer types. Patient-reported outcomes (PROs) are assessed in clinical trials as a measure of efficacy.
Eicher, Manuela, Ribi, Karin, Bryant-Lukosius, D., Eicher, M., Orcurto, A., Orcurto, Angela, Martelli, Lorraine, Ribi, K., Sherifali, Diana, Juergens, R., Fitzpatrick-Lewis, Donna, Fitzpatrick-Lewis, D., Colomer-Lahiguera, Sara, Bryant-Lukosius, Denise, Rietkoetter, S., Juergens, Rosalyn, Rietkoetter, Sarah, Colomer-Lahiguera, S., Martelli, L., Sherifali, D.   +19 more
core   +1 more source