Results 61 to 70 of about 8,587,641 (307)

Development and evaluation of the Acromegaly Symptom Diary

Journal of Patient-Reported Outcomes, 2023
Background Patient-reported outcome (PRO) measures are important to consider when evaluating treatments, yet there are no PRO measures for patients with acromegaly that have been developed in accordance with US Food and Drug Administration guidance ...
Susan Martin, Randall H. Bender, Alan Krasner, Tonya Marmon, Michael Monahan, Lauren Nelson   +5 more
doaj   +1 more source

Comparative Drug Response Profiling in Neuroblastoma Cell Lines and Patient‐Derived Tumor Organoids

Pediatric Blood &Cancer, EarlyView.
ABSTRACT High‐risk neuroblastoma remains a leading cause of pediatric cancer mortality, and improved preclinical models are needed to guide therapeutic developments. We screened seven high‐risk neuroblastoma cell lines and three patient‐derived tumor organoids with 528 compounds alongside bone marrow controls, and compared them with external datasets ...
Krzysztof Wierbiłowicz, Se Whee Sammy Park, Aironas Los, Ernest Liu, Nona Struyf, Tom Erkers, Sören Lehmann, Jan J. Molenaar, Jakob Stenman, Olli Kallioniemi, Päivi Östling, Brinton Seashore‐Ludlow, Kasper Karlsson   +12 more
wiley   +1 more source

Chronic rhinosinusitis with nasal polyps (CRSwNP) symptom verbal response scales: content validity testing for use in adults with CRSwNP

Journal of Patient-Reported Outcomes
Background PRO measures of symptoms in clinical trials have historically utilized visual and numerical scales but verbal descriptors may make it easier for patients to clearly differentiate between response options.
Tom Keeley, Nina Gaw, Waseem Ahmed, Rafael Alfonso-Cristancho, Ana R. Sousa, Katie Forde, Rosie Sharp, Sophie Whyman, Adam Gater   +8 more
doaj   +1 more source

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings

Health Expectations, 2020
Background US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient‐centered evidence better aligned with real‐world clinical needs. The Patient‐
Rachel Hemphill, Laura P. Forsythe, Andrea L. Heckert, Andrew Amolegbe, Maureen Maurer, Kristin L. Carman, Rikki Mangrum, Lisa Stewart, Ninma Fearon, Laura Esmail   +9 more
doaj   +1 more source

Impact of Radiation Therapy on Physical and Psychosocial Health of Adolescents and Young Adults: A Joint Report From the Children's Oncology Group AYA and Radiation Oncology Committees

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Rates of cancer among adolescents and young adults (AYA), age 15–39 years, are increasing. Consequently, radiation oncologists are treating more AYAs who have diagnoses spanning both pediatric and adult practices. Compared to pediatric and older adult patients, AYAs face a unique set of challenges.
Hesham Elhalawani, Rachel K. Peterson, Avani D. Rao, Laurie J. McKenzie, Ahmed Magdy Elmotayam, Leslie Chang, Michael Roth, Susan L. McGovern   +7 more
wiley   +1 more source

Health funders’ dissemination and implementation practices: results from a survey of the Ensuring Value in Research (EViR) Funders’ Forum

Implementation Science Communications, 2022
Background A significant gap persists between evidence from research and its use in practice. Research funders, important actors in the health research system, can help reduce this gap by initiating dissemination and implementation (D&I) activities.
Barbara van der Linden, Kelly M. Dunham, Joanna Siegel, Emily Lazowick, Michael Bowdery, Tara Lamont, Alison Ford   +6 more
doaj   +1 more source

Social Functioning Within the First Years After Pediatric Brain Tumor Diagnosis and the Relationship With Family Psychosocial Risk

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Survivors of pediatric brain tumors (PBTs) can experience long‐term social difficulties, impacting quality of life. Beyond medical and environmental factors, family psychosocial risk may play a role in social outcomes by shaping the caregiving environment and may provide intervention options.
Renske H. Houben, Marisa H. Huisman, Martha A. Grootenhuis, Femke K. Aarsen, Marita Partanen   +4 more
wiley   +1 more source

Health-related quality of life burden of nonalcoholic steatohepatitis: a robust pragmatic literature review

Journal of Patient-Reported Outcomes, 2018
Objective Nonalcoholic steatohepatitis (NASH) is a form of chronic liver disease (CLD): patients have an increased risk of developing cirrhosis, liver failure, and complications (e.g. hepatocellular carcinoma). NASH has a high clinical burden, and likely
Tessa Kennedy-Martin, Jay P. Bae, Rosirene Paczkowski, Emily Freeman   +3 more
doaj   +1 more source

Symptom burden and health-related quality of life impacts of smoldering multiple myeloma: the patient perspective

Journal of Patient-Reported Outcomes, 2020
Background Smoldering multiple myeloma (SMM) is an early form of multiple myeloma (MM). SMM is typically considered asymptomatic, and research on how it affects health-related quality of life (HRQoL) is limited. This study assessed the symptoms and HRQoL
Milenka Jean-Baptiste, Katharine S. Gries, William R. Lenderking, John Fastenau   +3 more
doaj   +1 more source

Development and content validity testing of patient-reported outcome (PRO) items to assess chest congestion associated with the common cold for use in children and adolescents

Journal of Patient-Reported Outcomes, 2022
Background This article describes qualitative interviews conducted with children (aged 6–11), adolescents (aged 12–17), and adults with the common cold as well as parents/caregivers of the 6–8-year-old children.
Rob Arbuckle, Chris Marshall, Laura Grant, Kate Burrows, Helmut H. Albrecht, Tim Shea   +5 more
doaj   +1 more source