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  1. In the past few decades, particularly in the mental health setting, there has been growing interest in using Patient Reported Outcome Measures (PROMs) to assess the efficacy of the treatments in healthcare sys...

    Authors: Kalpana Thapa Bajgain, Justino Mendoza, Farwa Naqvi, Fariba Aghajafari, Karen Tang, Jennifer Zwicker and Maria-Jose Santana
    Citation: Journal of Patient-Reported Outcomes 2024 8:20
  2. The Consensus Sleep Diary (CSD) is widely used to assess subjective sleep. Psychometric evaluations and focus-groups support its validity and clinical usefulness, but further research into its validity is need...

    Authors: Christina Bini, Carina Hjelm, Amanda Hellström, Kristofer Årestedt, Anders Broström and Christina Sandlund
    Citation: Journal of Patient-Reported Outcomes 2024 8:19
  3. In the context of Greece, many instruments measuring constructs pertinent to child and adolescent mental health lacked a locally-validated, freely-available version. As part of a nationwide survey, we translat...

    Authors: Vasiliki Eirini Karagiorga, Julia Luiza Schafer, Lauro Estivalete Marchionatti, Arthur Caye, Aspasia Serdari, Konstantinos Kotsis, Maria Basta, Panagiota Balikou, Efstathia Kapsimalli, Andromachi Mitropoulou, Nikanthi Klavdianou, Domna Zeleni, Sotiria Mitroulaki, Anna Botzaki, Giorgos Gerostergios, Giorgos Samiotakis…
    Citation: Journal of Patient-Reported Outcomes 2024 8:18
  4. The majority of non-metastatic breast cancer patients in sub-Saharan Africa are recommended to have mastectomy. The impact of mastectomy on a predominantly young African patient population requires evaluation....

    Authors: Olalekan Olasehinde, Kathleen A. Lynch, Debra A. Goldman, Olaide Agodirin, Chukwuma Okereke, Funmilola O. Wuraola, Israel Adeyemi Owoade, Promise Rebecca Akinmaye, Olusola Ajibade, Karin Barber, Joshua Ogunwale, Olusegun Alatise, T. Peter Kingham, Andrea Pusic and Anya Romanoff
    Citation: Journal of Patient-Reported Outcomes 2024 8:17
  5. Presbyopia is an age-related condition that causes a decreased ability to focus on nearby objects. Multifocal contact lenses are commonly used to address this issue. However, there seems to be a notable dissat...

    Authors: Elsa Albero-Ros, Amalia Lorente-Velázquez and Mariano González-Pérez
    Citation: Journal of Patient-Reported Outcomes 2024 8:16
  6. Decisions regarding maintenance therapy in patients with multiple myeloma should be based on both treatment efficacy and health-related quality of life (HRQL) consequences. In the CARFI trial, patients with fi...

    Authors: Lene Kongsgaard Nielsen, Fredrik Schjesvold, Sören Möller, Nina Guldbrandsen, Markus Hansson, Kari Remes, Valdas Peceliunas, Niels Abildgaard, Henrik Gregersen and Madeleine T. King
    Citation: Journal of Patient-Reported Outcomes 2024 8:15
  7. Childhood cancer survivors (CCS) are at risk of deficits in their social outcomes, a key aspect of overall health and quality of life. Social outcomes of import are ill-defined leading to potential gaps in res...

    Authors: Sarah H. Milner, R. G. Feltbower, K. L. Absolom and A. W. Glaser
    Citation: Journal of Patient-Reported Outcomes 2024 8:14
  8. The construct validity and interpretation of the Patient-Reported Outcome Measurement Information System (PROMIS®) Physical Function short form 20a (PF20a) questionnaire were evaluated for patients with late-onse...

    Authors: Priya S. Kishnani, Simon Shohet, Syed Raza, Noemi Hummel, Jeffrey P. Castelli, Sheela Sitaraman Das, Heng Jiang, Agnieszka Kopiec, Ian Keyzor and Andreas Hahn
    Citation: Journal of Patient-Reported Outcomes 2024 8:13
  9. Individual appraisals of personal well-being consider a spectrum of constructs including the reflections on the degree to which one’s life is ultimately secure, meaningful, or valued in the context of dynamic ...

    Authors: Jumana Hashim, Huso Yi, Pin Sym Foong, E Shyong Tai and Robert P Nolan
    Citation: Journal of Patient-Reported Outcomes 2024 8:12
  10. Cardiovascular diseases (CVD) represent the world’s leading cause of death. Health-related quality of life (HRQoL) is a widely applied concept of patients’ perceived health and is directly linked to CVD morbid...

    Authors: Lorenza L. S. Lanini, Sebastian Euler, Claudia Zuccarella-Hackl, Rubén Fuentes Artiles, David Niederseer, Bianca Auschra, Roland von Känel and Lena Jellestad
    Citation: Journal of Patient-Reported Outcomes 2024 8:11
  11. The widespread availability of antiretroviral therapy has led to improvements in life expectancy and thus an increase in the number of people living with HIV/AIDS (PLWHA) worldwide. However, a similar increase...

    Authors: Maria Panayi, Georgios K. Charalambous and Eleni Jelastopulu
    Citation: Journal of Patient-Reported Outcomes 2024 8:10
  12. Interpretation thresholds for patient-reported outcome (PRO) scores are of crucial importance, particularly when interpreting treatment benefit. This study was designed to determine the within-patient meaningf...

    Authors: Regina Rendas-Baum, Xiaochen Lin, Mark Kosinski, Jakob Bue Bjorner, Marguerite G. Bracher and Wen-Hung Chen
    Citation: Journal of Patient-Reported Outcomes 2024 8:9
  13. No specific measures exist to assess patient-reported symptoms experienced by individuals with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) or mantle cell lymphoma (MCL). This study was ...

    Authors: Jessica T. Markowitz, Flora Mazerolle, Teya Lovell, Lisa M. Hess, Paolo B. Abada, Antoine Regnault and Nalin Payakachat
    Citation: Journal of Patient-Reported Outcomes 2024 8:8
  14. Established health-related quality of life scores do not consider both subjective and objective indices of health. We propose the subjective and objective quality of life score (SOQOL) for the comprehensive as...

    Authors: Ralph J. Mobbs, R. Dineth Fonseka, Pragadesh Natarajan, Lianne Koinis and Monish Maharaj
    Citation: Journal of Patient-Reported Outcomes 2024 8:7
  15. The Weight-Specific Adolescent Instrument for Economic Evaluation (WAItE) is a physical weight-specific patient reported outcome measure for use in adolescence. The purpose of this study was to use the Time Tr...

    Authors: Tomos Robinson, Sarah Hill, Giovany Orozco-Leal, Ashleigh Kernohan, William King and Yemi Oluboyede
    Citation: Journal of Patient-Reported Outcomes 2024 8:6
  16. The Patient-Reported Outcomes Measurement and Information System (PROMIS®) global health items (global-10) yield physical and mental health scale scores and the PROMIS-Preference (PROPr) scoring system estimat...

    Authors: Ron D. Hays, Patricia M. Herman, Nabeel Qureshi, Anthony Rodriguez and Maria Orlando Edelen
    Citation: Journal of Patient-Reported Outcomes 2024 8:5
  17. Patient-reported outcomes (PROs) play a crucial role in assessing rheumatic diseases, o...

    Authors: A. Kernder, M. Rohde, H. Acar, C. Düsing, R. Fischer-Betz, I. Haase, J. Mucke, O. Sander, J. G. Richter, T. Filla, M. Schneider and G. Chehab
    Citation: Journal of Patient-Reported Outcomes 2024 8:4
  18. The FitMáx© was developed as a questionnaire-based instrument to estimate Cardiorespiratory Fitness (CRF) expressed as oxygen uptake at peak exercise (VO2peak). Test–retest reliability is a clinometric measuremen...

    Authors: Renske Meijer, Goof Schep, Marta Regis, Nicole E. Papen-Botterhuis, Hans H. C. M. Savelberg and Martijn van Hooff
    Citation: Journal of Patient-Reported Outcomes 2024 8:3
  19. Tardive dyskinesia (TD), a movement disorder in which patients experience abnormal involuntary movements, can have profound negative impacts on physical, cognitive, and psychosocial functioning. The Abnormal I...

    Authors: Robert H. Farber, Donald E. Stull, Brooke Witherspoon, Christopher J. Evans, Charles Yonan, Morgan Bron, Rahul Dhanda, Eric Jen and Christopher O.’ Brien
    Citation: Journal of Patient-Reported Outcomes 2024 8:2
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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
  32. 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
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
  44. 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
  45. 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
  46. 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
  47. 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
  48. 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
  49. 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

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