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  1. While there is increasing evidence on the benefits of PROMs in cancer care, the extent of routine collection and use of PROMs in clinical cancer practice across Australia and New Zealand (ANZ) is unknown. This...

    Authors: Ashika D. Maharaj, Natasha Roberts, Michael Jefford, Jerome Ng, Claudia Rutherford and Bogda Koczwara
    Citation: Journal of Patient-Reported Outcomes 2024 8:1
  2. Women with Fibromyalgia Syndrome (FMS) can benefit form adequate social support to fight the consequences of their illness, but the extent to which this is available to those with low incomes who live in depre...

    Authors: Sebastian Eustaquio Martín Pérez, Isidro Miguel Martín Pérez, Ania Álvarez Sánchez, Paula Acosta Pérez and Eliana Rodríguez Alayón
    Citation: Journal of Patient-Reported Outcomes 2023 7:135
  3. To account for heterogeneity in systemic lupus erythematosus (SLE) and bridge discrepancies between patient- and physician-perceived SLE activity, we developed the Type 1 and 2 SLE model. We examined PROMIS-29...

    Authors: Kai Sun, Amanda M. Eudy, Nathaniel Harris, David S. Pisetsky, Lisa G. Criscione-Schreiber, Rebecca E. Sadun, Jayanth Doss, Megan E. B. Clowse and Jennifer L. Rogers
    Citation: Journal of Patient-Reported Outcomes 2023 7:136
  4. Understanding patients’ perspectives regarding drug tolerability, in addition to effectiveness, provides a complete picture of the patient experience and supports more informed therapeutic decision-making. The...

    Authors: Stacy Davis, Teresa Edwards, Lindsey Norcross, Sheri Fehnel, Amélie Beaudet, Marie Eckart and John Fastenau
    Citation: Journal of Patient-Reported Outcomes 2023 7:134
  5. More than 60% of patients with atrial fibrillation (AF) have a significant health-related quality of life (HRQoL) impairment. HRQoL, a patient-reported outcome (PRO), has become an important endpoint to assess...

    Authors: Putri Zulmiyusrini, Muhammad Yamin, Muhadi Muhadi, Juferdy Kurniawan and Simon Salim
    Citation: Journal of Patient-Reported Outcomes 2023 7:133
  6. The progression of Duchenne muscular dystrophy (DMD) is characterized by loss of ambulation, respiratory insufficiency, cardiomyopathy, and early mortality. DMD profoundly impacts health-related quality-of-lif...

    Authors: Ivana F. Audhya, Shelagh M. Szabo, Andrea Bever, Fiona O’Sullivan, Daniel C. Malone, David Feeny, Peter Neumann, Susan T. Iannaccone, P. Jayasinghe and Katherine L. Gooch
    Citation: Journal of Patient-Reported Outcomes 2023 7:132
  7. Patient-reported outcomes (PROs) collection and utilization improves patient-provider communication, symptom reporting, and patient satisfaction. Despite their significance, the science and utility of PROs are...

    Authors: Samuel A. Florentino, Suzanne B. Karan, Gabriel Ramirez and Judith F. Baumhauer
    Citation: Journal of Patient-Reported Outcomes 2023 7:131
  8. Patient-reported outcome (PRO) measures provide valuable evidence in clinical trials; however, poor compliance with PRO measures is a notable and long-standing problem, resulting in missing data that potential...

    Authors: Anna Hundt Golden, Meghan Hufstader Gabriel, Jon Russo, Mark Price, Stephen Ruhmel, Ami Nilsson, Patricia Shepherd Delong, Jennifer Jelsma and Michelle Carty
    Citation: Journal of Patient-Reported Outcomes 2023 7:130
  9. Duchenne muscular dystrophy (DMD) is a rare, severe, fatal neuromuscular disease characterized by progressive atrophy and muscle weakness, resulting in loss of ambulation, decreased upper body function, and im...

    Authors: Victoria Brown, Elizabeth Merikle, Kelly Johnston, Katherine Gooch, Ivana Audhya and Linda Lowes
    Citation: Journal of Patient-Reported Outcomes 2023 7:129
  10. In January 2021, 999 COVID-19 positive adults in the US enrolled in an online, direct-to-patient registry to describe daily symptom severity and progression over 28 days. The most commonly reported and persist...

    Authors: Emma Brinkley, Kendall Knuth, Tom Kwon, Christina Mack, Heidi Leister-Tebbe, Weihand Bao, Matthew W Reynolds and Nancy Dreyer
    Citation: Journal of Patient-Reported Outcomes 2023 7:128
  11. Case-mix adjustment of patient reported experiences (PREMs) and outcomes (PROMs) of care are meant to enable fair comparison between units (e.g. care providers or countries) and to show where improvement is po...

    Authors: Peter P. Groenewegen, Peter Spreeuwenberg, Alastair H. Leyland, Dolf de Boer and Wienke Boerma
    Citation: Journal of Patient-Reported Outcomes 2023 7:127
  12. The onset of COVID-19 has caused an international upheaval of traditional in-person approaches to care delivery. Rapid system-level transitions to virtual care provision restrict the ability of healthcare prof...

    Authors: Bishnu Bajgain, Sarah Rabi, Sadia Ahmed, Veronika Kiryanova, Paul Fairie and Maria J. Santana
    Citation: Journal of Patient-Reported Outcomes 2023 7:126
  13. To translate the eight PROMIS® GastrointestinaI Symptom Scales into Dutch–Flemish and to evaluate their psychometric properties.

    Authors: Mirjam van der Ende-van Loon, Dorinde Korteling, Hilde Willekens, Monique Schilders, Wouter Curvers, Raf Bisschops, Erik Schoon and Caroline Terwee
    Citation: Journal of Patient-Reported Outcomes 2023 7:125
  14. To assess quality of life and unmet needs after stroke, patient-reported outcome measures (PROMs) have gained increasing attention. However, patients’ perspectives on assessing PROMs remain unclear, potentiall...

    Authors: Richard Schmidt, Daniela Geisler, Daniela Urban, Rebecca Pries, Christina Franzisket, Christian Voigt, Galina Ivanova, Thomas Neumuth, Joseph Classen, Markus Wagner and Dominik Michalski
    Citation: Journal of Patient-Reported Outcomes 2023 7:124
  15. A common method of pain assessment is the numerical rating scale, where patients are asked to rate their pain on a scale from 0 to 10, where 0 is “no pain” and 10 is “pain as bad as you can imagine”. We hypoth...

    Authors: Amy L. Tin, Mia Austria, Gabriel Ogbennaya, Susan Chimonas, Paulin Andréll, Thomas M. Atkinson, Andrew J. Vickers and Sigrid V. Carlsson
    Citation: Journal of Patient-Reported Outcomes 2023 7:123
  16. Tardive dyskinesia (TD) has a multidimensional impact on patients with TD and, as importantly, their caregivers. An online survey was developed and administered to assess patient and caregiver burden of TD. Su...

    Authors: Rakesh Jain, Rajeev Ayyagari, Debbie Goldschmidt, Mo Zhou, Stacy Finkbeiner and Sam Leo
    Citation: Journal of Patient-Reported Outcomes 2023 7:122

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2024 8:51

  17. PROs are valuable tools in clinical care to capture patients’ perspectives of their health, symptoms and quality of life. However the COVID-19 pandemic has had profound impacts on all aspects of life, in parti...

    Authors: Patricia Holch, Grace Turner, Anju D Keetharuth, E Gibbons, Kim Cocks and Kate L Absolom
    Citation: Journal of Patient-Reported Outcomes 2023 7:121
  18. Eosinophilic esophagitis (EoE) has a detrimental effect on health-related quality of life (HRQOL). The Eosinophilic Esophagitis Impact Questionnaire (EoE-IQ) is a novel patient-reported outcome (PRO) measure a...

    Authors: Eilish McCann, Mirna Chehade, Jonathan M. Spergel, Andrew Yaworsky, Tara Symonds, Jonathan Stokes, Sarette T. Tilton, Xian Sun and Siddhesh Kamat
    Citation: Journal of Patient-Reported Outcomes 2023 7:120
  19. Erythropoietic protoporphyria is a rare, inherited disorder presenting in early childhood with severe, painful phototoxicity. EPP has significant impacts on health-related quality of life, though there is vari...

    Authors: Susan D. Mathias, Laurie Burke, Hilary H. Colwell, George Mensing, Will Savage and Hetanshi Naik
    Citation: Journal of Patient-Reported Outcomes 2023 7:119
  20. Cerebral palsy (CP) is one of the most common childhood disabilities, impacting many areas of a child’s life. Increasingly, quality of life (QOL) measures are used to capture holistic wellbeing of children wit...

    Authors: Elena Swift, Lisa Gibbs, Dinah Reddihough, Andrew Mackinnon and Elise Davis
    Citation: Journal of Patient-Reported Outcomes 2023 7:118
  21. This proof-of-concept retrospective case study investigated whether patient-reported outcomes (PRO) instruments, designed to capture symptomatic adverse event data, could identity a known exposure–response (ER...

    Authors: Huiming Xia, Brian P. Booth, Yaning Wang, Chunling Fan, Vishal Bhatnagar, Paul Kluetz and Jeanne Fourie Zirkelbach
    Citation: Journal of Patient-Reported Outcomes 2023 7:116
  22. This study evaluated the content validity and psychometric properties of the Patient-Reported Outcomes Measurement Information System® (PROMIS)-Fatigue Short Form 7a (SF-7a) v1.0 scale to determine its suitabi...

    Authors: Brian G. Feagan, William J. Sandborn, Bruce E. Sands, Yan Liu, Marion Vetter, Susan D. Mathias, Kuan-Hsiang Gary Huang, Jewel Johanns, Matthew Germinaro and Chenglong Han
    Citation: Journal of Patient-Reported Outcomes 2023 7:115
  23. Hospitals and healthcare workers have been greatly impacted by the COVID-19 pandemic. The potential impacts upon the patient experience have been less documented, particularly in the pediatric setting. Our aim...

    Authors: Kyle A. Kemp, Paul Fairie, Brian Steele and Maria J. Santana
    Citation: Journal of Patient-Reported Outcomes 2023 7:114
  24. Chemotherapy-induced peripheral neuropathy (CIPN) is an under-recognized complication of several chemotherapy agents used as part of curative-intent therapy for Hodgkin Lymphoma (HL). In the absence of validat...

    Authors: Susan K. Parsons, Angie Mae Rodday, Qinglin Pei, Frank G. Keller, Yue Wu, Tara O. Henderson, David Cella, Kara M. Kelly and Sharon M. Castellino
    Citation: Journal of Patient-Reported Outcomes 2023 7:113
  25. Pyruvate kinase (PK) deficiency is a rare hereditary disorder characterized by chronic hemolytic anemia and serious sequalae which negatively affect patient quality of life. This study aimed to psychometricall...

    Authors: David A. Andrae, Rachael F. Grace, Adrian Jewett, Brandon Foster, Robert J. Klaassen, Sam Salek, Junlong Li, Feng Tai, Audra N. Boscoe and Erin Zagadailov
    Citation: Journal of Patient-Reported Outcomes 2023 7:112
  26. During transition to adulthood and transfer to adult healthcare, emerging adults with chronic conditions are at risk of deteriorating disease control, well-being, and acute, as well as long-term complications....

    Authors: Mikaela Vallmark, Anna Lena Brorsson, Carina Sparud-Lundin, Ewa-Lena Bratt, Philip Moons, Markus Saarijärvi and Mariela Acuña Mora
    Citation: Journal of Patient-Reported Outcomes 2023 7:111
  27. The Dysphagia Symptom Questionnaire (DSQ) is a patient-reported outcome measure that assesses the frequency and severity of dysphagia in patients with eosinophilic esophagitis (EoE); however, it has only been ...

    Authors: Robin M. Pokrzywinski, Bridgett Goodwin, Evan S. Dellon, Ellyn Kodroff, Anne Brooks, Adam Bailey, James Williams and Nirav K. Desai
    Citation: Journal of Patient-Reported Outcomes 2023 7:110
  28. To produce a culturally adapted translation of the Rapid Assessment of Physical Activity (RAPA) questionnaire for German speaking Austrians and to conduct a linguistic validation of the new language version.

    Authors: Stefan Tino Kulnik, Johanna Gutenberg, Kathrin Mühlhauser, Tari Topolski and Rik Crutzen
    Citation: Journal of Patient-Reported Outcomes 2023 7:109
  29. In patients with inflammatory bowel disease (IBD), a symptom with major impact on health-related quality of life is fatigue. To assess fatigue and conduct research regarding fatigue in IBD patients, a validate...

    Authors: Annemay M. H. Stoker, Angélique Gruters, Mirjam C. M. van der Ende-van Loon, Debby Postulart, Wladyslawa Czuber-Dochan and Lennard P. L. Gilissen
    Citation: Journal of Patient-Reported Outcomes 2023 7:108
  30. Neck pain is the fourth leading cause of years lost to disability in children warranting a comprehensive assessment of neck pain and its impact on activities and participation. Hence, the purpose of this study...

    Authors: Devashish Tiwari, Keshrie Naidoo, Emily Z. Eddy, Naseem Chatiwala and Maninderjit Kaur
    Citation: Journal of Patient-Reported Outcomes 2023 7:107
  31. Exercise therapy is considered effective for the treatment of motor impairment in patients with Parkinson’s disease (PD). During the COVID-19 pandemic, training sessions were cancelled and the implementation o...

    Authors: Lisa Lützow, Isabelle Teckenburg, Veronika Koch, Franz Marxreiter, Jelena Jukic, Sabine Stallforth, Martin Regensburger, Jürgen Winkler, Jochen Klucken and Heiko Gaßner
    Citation: Journal of Patient-Reported Outcomes 2023 7:106
  32. Patient-reported outcome measures that facilitate self-report by children are needed to reduce the bias of proxy report. We previously developed an electronic Pediatric Asthma Symptom Diary (ePASD) to assess t...

    Authors: Valerie Williams, Carla Romano, Marci Clark, Dane Korver, Nikki Williams, Diana Goss, Christel Naujoks and Jessica Marvel
    Citation: Journal of Patient-Reported Outcomes 2023 7:105
  33. Pediatric asthma has been identified by regulators, clinicians, clinical trial sponsors, and caregivers as an area in need of novel fit-for-purpose clinical outcome assessments (COAs) developed in accordance w...

    Authors: Helena Bradley, Claire Trennery, Amy M. Jones, Aoife Lydon, Frances White, Rebecca Williams-Hall, Rob Arbuckle, Erin Tomaszewski, Vivian H. Shih, John Haughney, Amanda Eisen, Tonya Winders, Stephen Joel Coons and Sonya Eremenco
    Citation: Journal of Patient-Reported Outcomes 2023 7:104
  34. Patient-reported outcome (PRO) measures can inform clinical decision making and planning of treatment in the health care system. The aim of this study was to examine whether patient-reported health domains inf...

    Authors: Stine Primdahl Rasmussen, Liv Marit Valen Schougaard, Niels Henrik Hjøllund and David Høyrup Christiansen
    Citation: Journal of Patient-Reported Outcomes 2023 7:103
  35. Colorectal cancer is the third most common cancer diagnosis globally and is increasing in both incidence and prevalence. Despite evidence showing that family members of persons diagnosed with cancer have suppo...

    Authors: Maria Samuelsson, Anne Wennick, Mariette Bengtsson, Marie-Louise Lydrup and Jenny Jakobsson
    Citation: Journal of Patient-Reported Outcomes 2023 7:100
  36. Patient-reported outcomes (PROs) are getting widely implemented, but little is known of the impact of applying PROs in specific cancer diagnoses. We report the results of a randomized controlled trial (RCT) of...

    Authors: Gry Assam Taarnhøj, Christoffer Johansen, Andreas Carus, Rikke Hedegaard Dahlrot, Line Hammer Dohn, Niels Henrik Hjøllund, Mark Bech Knudsen, Anders Tolver, Henriette Lindberg and Helle Pappot
    Citation: Journal of Patient-Reported Outcomes 2023 7:99
  37. Electronic patient-reported outcome (ePRO) systems are increasingly used in clinical trials to provide evidence of efficacy and tolerability of treatment from the patient perspective. The aim of this study is ...

    Authors: Christel McMullan, Ameeta Retzer, Sarah E. Hughes, Olalekan Lee Aiyegbusi, Camilla Bathurst, Alan Boyd, Jamie Coleman, Elin Haf Davies, Alastair K. Denniston, Helen Dunster, Chris Frost, Rosie Harding, Amanda Hunn, Derek Kyte, Rebecca Malpass, Gary McNamara…
    Citation: Journal of Patient-Reported Outcomes 2023 7:98
  38. Understanding which patient-reported outcome measures are being collected and utilized in clinical practice and research for patients with neck pain will help to inform recommendations for a core set of measur...

    Authors: Michelle M. Ramirez, Mark H. Shepherd, S. Jacob Melnick, Cannon Hanebuth, Caroline Bazemore, Logan Couce, Steph Hendren and Maggie E. Horn
    Citation: Journal of Patient-Reported Outcomes 2023 7:97
  39. Policies to support people living with dementia increasingly focus on strengths-based approaches, highlighting the importance of building resilience. This research responds to the lack of a suitable resilience...

    Authors: Jennifer Rhiannon Roberts, Catherine Anne MacLeod, Zoe Hoare, Mary Pat Sullivan, Emilie Brotherhood, Joshua Stott and Gill Windle
    Citation: Journal of Patient-Reported Outcomes 2023 7:96
  40. Classic Galactosemia (CG) is a rare, autosomal recessive condition. Newborn screening and a timely galactose-restricted diet can resolve acute symptoms and decrease fatalities, but significant chronic, progres...

    Authors: Jason A. Randall, Carolyn Sutter, Lydia Raither, Stella Wang, Evan Bailey, Riccardo Perfetti, Shoshana Shendelman and Claire Burbridge
    Citation: Journal of Patient-Reported Outcomes 2023 7:95
  41. Multimorbidity is a burden for the individual and to the healthcare sector worldwide, leading to a rising number of intervention studies towards this patient group. To measure a possible effect of such interve...

    Authors: Kristine Bissenbakker, Volkert Siersma, Alexandra Brandt Ryborg Jønsson, Anne Møller, Karl Bang Christensen and John Brandt Brodersen
    Citation: Journal of Patient-Reported Outcomes 2023 7:94
  42. The health-related quality of life (HRQoL) among long-term Adolescent and Young Adult Cancer Survivors (AYACS) and an age- and sex-matched normative population was examined. Although the HRQoL of AYACS was wor...

    Authors: Carla Vlooswijk, Silvie H. M. Janssen, Lonneke V. van de Poll-Franse, Rhodé Bijlsma, Suzanne E. J. Kaal, J. Martijn Kerst, Jacqueline M. Tromp, Monique E. M. M. Bos, Roy I. Lalisang, Janine Nuver, Mathilde C. M. Kouwenhoven, Winette T. A. van der Graaf and Olga Husson
    Citation: Journal of Patient-Reported Outcomes 2023 7:93
  43. The COMET-ICE trial demonstrated that sotrovimab clinically and statistically significantly reduces the risk of all-cause > 24-h hospitalization or death due to any cause among patients with COVID-19 at high r...

    Authors: Sacha Satram, Parima Ghafoori, Carolina M. Reyes, Tom J. H. Keeley, Helen J. Birch, Dimitra Brintziki, Melissa Aldinger, Elizabeth Alexander, Amanda Lopuski, Elias H. Sarkis, Anil Gupta, Adrienne E. Shapiro and John H. Powers III
    Citation: Journal of Patient-Reported Outcomes 2023 7:92
  44. The International Consortium for Health Outcomes Measurement (ICHOM) developed a standard set of patient-centered outcome measures for use in stroke patients. In addition to the Patie...

    Authors: Daniëlla M Oosterveer, Winke van Meijeren-Pont, Frederike van Markus-Doornbosch, Etienne Stegeman, Caroline B Terwee, Gerard M Ribbers and Thea PM Vliet Vlieland
    Citation: Journal of Patient-Reported Outcomes 2023 7:91
  45. Comparison of patient-reported outcomes in multilingual studies requires evidence of the equivalence of translated versions of the questionnaires. The present study examines the factorial validity and comparab...

    Authors: Marina Zeldovich, Fabian Bockhop, Amra Covic, Isabelle Mueller, Suzanne Polinder, Ana Mikolic, Marjolein van der Vlegel and Nicole von Steinbuechel
    Citation: Journal of Patient-Reported Outcomes 2023 7:90
  46. Treatments for type 2 diabetes vary widely in their complexity. The simplicity or complexity of a treatment regimen may have an impact on patient preference, treatment adherence, and health outcomes. The purpo...

    Authors: Katie D. Stewart, Louis S. Matza, Hiren Patel and Kristina S. Boye
    Citation: Journal of Patient-Reported Outcomes 2023 7:89

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