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  1. The Kansas City Cardiomyopathy Questionnaire (KCCQ) is a Patient-Reported Outcome Measure (PROM) used to evaluate the health status of patients with heart failure (HF) but has predominantly been tested in sett...

    Authors: Jonathan Davis, Kristan Olazo, Maribel Sierra, Michelle E. Tarver, Brittany Caldwell, Anindita Saha, Sarah Lisker, Courtney Lyles and Urmimala Sarkar

    Citation: Journal of Patient-Reported Outcomes 2022 6:6

    Content type: Research

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  2. Endometriosis is a chronic disorder of the female reproductive system characterized by debilitating symptoms, particularly endometriosis-related pain (ERP). Patient-reported outcome (PRO) measures of symptoms ...

    Authors: Yanfen Guan, Allison M. Nguyen, Samantha Wratten, Sharan Randhawa, Jessica Weaver, Felipe Arbelaez, Arnaud Fauconnier and Charlotte Panter

    Citation: Journal of Patient-Reported Outcomes 2022 6:5

    Content type: Research

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  3. We sought to investigate the impact of patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE) on overall quality-of-life (QOL) employing linear analogue self-assess...

    Authors: C. S. Thorpe, T. A. DeWees, M. A. Golafshar, R. S. Bhangoo, T. Z. Vern-Gross, L. A. McGee, W. W. Wong, M. Y. Halyard, S. R. Keole and C. E. Vargas

    Citation: Journal of Patient-Reported Outcomes 2022 6:3

    Content type: Research

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  4. A crucial component to improving patient care is better clinician understanding of patients’ health-related quality of life (HRQoL). In orthopaedic surgery, HRQoL assessment instruments such as the NIH develop...

    Authors: Liam H. Wong and James E. Meeker

    Citation: Journal of Patient-Reported Outcomes 2022 6:2

    Content type: Review

    Published on:

  5. Fatigue is a common and often disturbing sequela of serious chronic health conditions. In the widely applied HRQL instrument, the EQ-5D, this aspect is not included directly, for its assumed lack of additional...

    Authors: Inge Spronk, Suzanne Polinder, Gouke J. Bonsel, M. F. Janssen and Juanita A. Haagsma

    Citation: Journal of Patient-Reported Outcomes 2022 6:1

    Content type: Research

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  6. Chronic kidney disease-associated pruritus (CKD-aP) is characterized by persistent itch that often leads to substantially impaired quality of life. The Worst Itching Intensity Numerical Rating Scale (WI-NRS) i...

    Authors: Margaret K. Vernon, Laura L. Swett, Rebecca M. Speck, Catherine Munera, Robert H. Spencer, Warren Wen and Frédérique Menzaghi

    Citation: Journal of Patient-Reported Outcomes 2021 5:134

    Content type: Research

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  7. The Canadian Occupational Performance Measure (COPM) is an individualized patient-reported outcome designed to evaluate the self-perceptions of a patient’s occupational performance. Our study aimed to examine ...

    Authors: Kanta Ohno, Kounosuke Tomori, Tatsunori Sawada and Ryuji Kobayashi

    Citation: Journal of Patient-Reported Outcomes 2021 5:133

    Content type: Research

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  8. Electronic health records (EHR) data can be used to understand population level quality of care especially when supplemented with patient reported data. However, survey non-response can result in biased popula...

    Authors: Walter F. Stewart, Xiaowei Yan, Alice Pressman, Alice Jacobson, Shruti Vaidya, Victoria Chia, Dawn C. Buse and Richard B. Lipton

    Citation: Journal of Patient-Reported Outcomes 2021 5:132

    Content type: Research

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  9. Cognitive interviewing is a well-established qualitative method used to develop and refine PRO measures. A range of digital technologies including phone, web conferencing, and electronic survey platforms can b...

    Authors: Abigail Fry, Sandra A. Mitchell and Lori Wiener

    Citation: Journal of Patient-Reported Outcomes 2021 5:131

    Content type: Short report

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  10. The aim of this study was to generate health state utilities for aromatic L-amino acid decarboxylase (AADC) deficiency, a rare genetic, lifelong neurogenerative condition predominantly manifesting in young inf...

    Authors: Adam B. Smith, Andria Hanbury and Katharina Buesch

    Citation: Journal of Patient-Reported Outcomes 2021 5:130

    Content type: Research

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  11. Rheumatoid arthritis (RA) is a chronic inflammatory disease often associated with persistent pain. There is a need for a patient-reported outcome measure (PROM) that is rooted in the patient experience and psy...

    Authors: Brandon Becker, Marguerite Bracher, Deven Chauhan, Regina Rendas-Baum, Xiaochen Lin, Kimberly Raymond, Meaghan O’Connor and Mark Kosinski

    Citation: Journal of Patient-Reported Outcomes 2021 5:129

    Content type: Research

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  12. Though often overlooked, calming patients and increasing their life engagement are key factors in the treatment of major depressive disorder (MDD). This study aimed to test the hypothesis that adjunctive brexp...

    Authors: Catherine Weiss, Stine R. Meehan, T. Michelle Brown, Catherine Gupta, Michael F. Mørup, Michael E. Thase, Roger S. McIntyre and Zahinoor Ismail

    Citation: Journal of Patient-Reported Outcomes 2021 5:128

    Content type: Research

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  13. Summaries of product characteristics (SmPCs) are regulatory documents published upon drug approval. They should report all relevant study data and advise how to use drugs safely and effectively. Patient-report...

    Authors: Susanne Haag, Lisa Junge, Fabian Lotz, Natalie McGauran, Marios Paulides, Regine Potthast and Thomas Kaiser

    Citation: Journal of Patient-Reported Outcomes 2021 5:127

    Content type: Short report

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  14. To document a generalizable process for developing a patient-prioritized chronic obstructive pulmonary disease (COPD) research agenda and to provide an overview of domains that were developed in response to pe...

    Authors: Inga Gruß, Gretchen M. McCreary, Ilya Ivlev, Mary Ellen Houlihan, Barbara P. Yawn, Cara Pasquale, William Clark and Richard A. Mularski

    Citation: Journal of Patient-Reported Outcomes 2021 5:126

    Content type: Research

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  15. Presbyopia is a progressive condition that reduces the eye’s ability to focus on near objects with increasing age. After a systematic literature review identified no existing presbyopia-specific patient-report...

    Authors: Elaheh Shirneshan, Cheryl D. Coon, Nathan Johnson, Jonathan Stokes, Ted Wells, J. Jason Lundy, David A. Andrae, Christopher J. Evans and Joanna Campbell

    Citation: Journal of Patient-Reported Outcomes 2021 5:125

    Content type: Research

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  16. This study examined the impact of Duchenne muscular dystrophy (DMD) on family-member caregivers in terms of quality of life, life stress, and indirect costs, as compared to a stratified comparison group of par...

    Authors: Carolyn E. Schwartz, Roland B. Stark, Ivana F. Audhya and Katherine L. Gooch

    Citation: Journal of Patient-Reported Outcomes 2021 5:124

    Content type: Research

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  17. Most children with autism spectrum disorder (ASD) suffer from aberrant responses to sensory stimuli that significantly impact the quality of life. To develop sensory interventions, individually tailored outcom...

    Authors: Dorinde M. van Andel, Henk F. van Stel, Floortje E. Scheepers, Kim J. Oostrom, Lotte Haverman and Hilgo Bruining

    Citation: Journal of Patient-Reported Outcomes 2021 5:123

    Content type: Research

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  18. The latest European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-Lung Cancer 29 (QLQ-LC29) has been translated and validated in several languages but not yet in simpl...

    Authors: Wei Dai, Yaqin Wang, Yangjun Liu, Xing Wei, Ahmed M. Y. Osman, Cecilia Pompili, Michael Koller, Qifeng Wang, Yi Wang, Jun Ge, Tianpeng Xie and Qiang Li

    Citation: Journal of Patient-Reported Outcomes 2021 5:122

    Content type: Research

    Published on:

  19. In 2019, an estimated 296 million people were living with chronic hepatitis B virus (HBV) globally with approximately 2.4 million living within the United States. Those living with HBV require years if not dec...

    Authors: Catherine Freeland, Rhea Racho, Maureen Kamischke, Kate Moraras, Evangeline Wang, Chari Cohen and Stuart Kendrick

    Citation: Journal of Patient-Reported Outcomes 2021 5:121

    Content type: Research

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  20. Patient activation (PA) and Patient Involvement (PI) are considered elements in good survivorship. We aimed to evaluate the effect of a follow-up supported by electronic patient-reported outcomes (ePRO) on PA ...

    Authors: Sissel Ravn, Henriette Vind Thaysen, Victor Jilbert Verwaal, Lene Seibæk and Lene Hjerrild Iversen

    Citation: Journal of Patient-Reported Outcomes 2021 5:120

    Content type: Research

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  21. The disabilities of the arm, shoulder and hand (DASH) is a commonly used region-specific patient-reported outcome measure (PROM) that quantify upper extremity function (activity limitation) and symptoms. Curre...

    Authors: Ali H. Alnahdi

    Citation: Journal of Patient-Reported Outcomes 2021 5:119

    Content type: Research

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  22. Accurate symptom monitoring is vital when managing pediatric asthma, providing an opportunity to improve control and relieve associated burden. The CHILDHOOD ASTHMA CONTROL TEST (C-ACT) has been validated for ...

    Authors: Kate Sully, Nicola Bonner, Helena Bradley, Robyn von Maltzahn, Rob Arbuckle, Louise Walker-Nthenda, Aoife Mahon, Brandon Becker, Louise O’Hara, Katherine B. Bevans, Mark Kosinski, Robert S. Zeiger, Ross Mackenzie and Linda Nelsen

    Citation: Journal of Patient-Reported Outcomes 2021 5:118

    Content type: Research

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  23. Although circadian, seasonal, and other cycles have been observed for a number of chronic conditions, their impact on patient reported outcomes measurements (PROMs) has not been systematically explored, render...

    Authors: A. F. Davey, J. Coombes, I. Porter, C. Green, A. J. Mewse and J. M. Valderas

    Citation: Journal of Patient-Reported Outcomes 2021 5:117

    Content type: Research

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  24. Patient reported outcome measures (PROMs) are increasingly being incorporated into clinical and surgical care for assessing outcomes. This study examined outcomes important to patients in their decision to hav...

    Authors: Robin R. Whitebird, Leif I. Solberg, Jeanette Y. Ziegenfuss, Stephen E. Asche, Christine K. Norton, Marc F. Swiontkowski, Steven P. Dehmer and Elizabeth S. Grossman

    Citation: Journal of Patient-Reported Outcomes 2021 5:116

    Content type: Research

    Published on:

  25. Presbyopia is defined as the age-related deterioration in the ability to focus on close objects, causing difficulty with near vision tasks. The study aim was to understand the lived experience of phakic presby...

    Authors: Sarah Bentley, Amy Findley, Sima Chiva-Razavi, Christel Naujoks, Francesco Patalano, Chloe Johnson, Rob Arbuckle and James S. Wolffsohn

    Citation: Journal of Patient-Reported Outcomes 2021 5:114

    Content type: Research

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  26. English versions of the University of Washington Caregiver Stress (UW-CSS) and Benefit (UW-CBS) Scales were developed in the United States (US) to measure impact on caregivers of caring for a child/children. C...

    Authors: Dagmar Amtmann, Alyssa M. Bamer, Rana Salem, Arnold R. Gammaitoni, Bradley S. Galer and Mark P. Jensen

    Citation: Journal of Patient-Reported Outcomes 2021 5:113

    Content type: Short report

    Published on:

  27. Health related quality of life measurements are vital elements of public health surveillance that uncover unmet health needs and predict the success of health interventions. We described health related quality...

    Authors: Christopher K. Opio, Francis Kazibwe, Lalitha Rejani, Narcis B. Kabatereine and Ponsiano Ocama

    Citation: Journal of Patient-Reported Outcomes 2021 5:112

    Content type: Research

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  28. We aimed to describe (1) depressive and anxiety symptom burdens reported by adults on in-centre hemodialysis in Northern Alberta, Canada and (2) patients’ and nurses’ perceptions of managing such symptoms usin...

    Authors: Kara Schick-Makaroff, Lisa A. Wozniak, Hilary Short, Sara N. Davison, Scott Klarenbach, Robert Buzinski, Michael Walsh and Jeffrey A. Johnson

    Citation: Journal of Patient-Reported Outcomes 2021 5:111

    Content type: Research

    Published on:

  29. Urea cycle disorders (UCD) are inborn errors of metabolism, typically presenting neonatally. Excess ammonia builds rapidly within the body risking hyperammonemic episodes and potentially death. Long-term manag...

    Authors: Gillian Yeowell, Danielle Stephanie Burns and Francis Fatoye

    Citation: Journal of Patient-Reported Outcomes 2021 5:110

    Content type: Research

    Published on:

  30. Presbyopia is the age-related deterioration in the ability to focus on close objects. In order to develop a patient-reported outcome (PRO) instrument to assess near vision functioning, the Near Activity Visual...

    Authors: Sarah Bentley, Amy Findley, Sima Chiva-Razavi, Christel Naujoks, Francesco Patalano, Chloe Johnson, Rob Arbuckle and James S. Wolffsohn

    Citation: Journal of Patient-Reported Outcomes 2021 5:109

    Content type: Research

    Published on:

  31. Recovery after surgery is a complex process since it depends on many factors, such as the patient’s sex, age, surgery type, and presence of other diseases. This study aimed to translate and evaluate the psycho...

    Authors: Hooman Shahsavari, Golnar Ghane, Shahrzad Ghiyasvandian, Masoumeh Zakerimoghadam and Fatemeh Najafi

    Citation: Journal of Patient-Reported Outcomes 2021 5:108

    Content type: Research

    Published on:

  32. Patient-reported outcome measures are increasingly used by clinicians to support communication in telephone- or face-to-face consultations with patients. A renal disease questionnaire has been developed, but n...

    Authors: Birgith Engelst Grove, Liv Marit Valen Schougaard, Per Ramløv Ivarsen, Derek Kyte, Niels Henrik Hjollund and Annette de Thurah

    Citation: Journal of Patient-Reported Outcomes 2021 5:107

    Content type: Research

    Published on:

  33. Childhood obesity can affect physical as well as psychosocial wellbeing. Therefore, childhood obesity care aims to improve all dimensions of health related quality of life (HRQoL). HRQoL can be measured with t...

    Authors: Minke M. A. Eilander, Marieke M. A. van Mil, Leandra W. Koetsier, Jacob C. Seidell and Jutka Halberstadt

    Citation: Journal of Patient-Reported Outcomes 2021 5:106

    Content type: Research

    Published on:

  34. The Patient-Reported Outcomes Measurement Information System (PROMIS®) aims to provide self-reported item banks for several dimensions of physical, mental and social health. Here we investigate the psychometri...

    Authors: Frida Carlberg Rindestig, Marie Wiberg, John Eric Chaplin, Eva Henje and Inga Dennhag

    Citation: Journal of Patient-Reported Outcomes 2021 5:105

    Content type: Research

    Published on:

  35. Rehabilitation is a person-centred approach that optimizes functioning to reduce impairments in individuals with illness, injury or disability. Patient-reported outcome measures (PROMs) have a role in rehabili...

    Authors: Katie Churchill, Lisa Warner, Eileen Keogh and Fatima Al Sayah

    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):103

    Content type: Report

    Published on:

    This article is part of a Supplement: Volume 5 Supplement 2

  36. Many healthcare systems around the world have been increasingly using patient-reported outcome measures (PROMs) in routine outcome measurement to enhance patient-centered care and incorporate the patient’s per...

    Authors: Fatima Al Sayah, Xuejing Jin and Jeffrey A. Johnson

    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):99

    Content type: Report

    Published on:

    This article is part of a Supplement: Volume 5 Supplement 2

  37. Cancer patients experience numerous distressing symptoms and concerns across the course of their illness, which negatively influence their quality of life. Regardless of cancer type, unmanaged symptoms can lea...

    Authors: Linda Watson, Andrea Delure, Siwei Qi, Claire Link, Lindsi Chmielewski, Éclair Photitai and Louise Smith

    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):97

    Content type: Report

    Published on:

    This article is part of a Supplement: Volume 5 Supplement 2

  38. PROMs are essential to delivering patient-centred health care, and when applied routinely they can enhance communication between patients and providers, inform decisions for value-based health system improveme...

    Authors: Michael Terner, Krista Louie, Candy Chow and Greg Webster

    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):94

    Content type: Report

    Published on:

    This article is part of a Supplement: Volume 5 Supplement 2

  39. Kidney failure requiring dialysis is associated with high symptom burden and low health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) are standardized instruments that capture patie...

    Authors: Sara N. Davison, Scott Klarenbach, Braden Manns, Kara Schnick-Makaroff, Robert Buzinski, Bonnie Corradetti, Hilary Short and Jeffrey A. Johnson

    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):93

    Content type: Report

    Published on:

    This article is part of a Supplement: Volume 5 Supplement 2

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:115

  40. PROMs are part of routine measurement for hip and knee replacement in Alberta, Canada. We provide an overview of how PROMs are implemented in routine care, and how we use PROMs data for decision-making at diff...

    Authors: Deborah A. Marshall, Xuejing Jin, Lindsay B. Pittman and Christopher J. Smith

    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):87

    Content type: Report

    Published on:

    This article is part of a Supplement: Volume 5 Supplement 2

  41. PROMs use in primary care has expanded from simply describing patient populations to contributing to decision-making, in response to the increasingly complex, ever-changing healthcare environment. In Alberta, ...

    Authors: Krista Brower, Margo Schmitt-Boshnick, Michel Haener, Shea Wilks and Allison Soprovich

    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):84

    Content type: Report

    Published on:

    This article is part of a Supplement: Volume 5 Supplement 2

  42. The regular use of patient-reported measures (PRMs) has been associated with greater patient satisfaction and outcomes. In this article, we will review the Calgary Comprehensive Epilepsy Program's successful e...

    Authors: Guillermo Delgado-García, Samuel Wiebe and Colin B. Josephson

    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):83

    Content type: Report

    Published on:

    This article is part of a Supplement: Volume 5 Supplement 2

  43. Symptom constructs included in the Evaluating Respiratory Symptoms in Chronic Obstructive Pulmonary Disease (E-RS®: COPD) tool may be relevant to patients with asthma. The purpose of this study was to evaluate...

    Authors: Maggie Tabberer, Robyn von Maltzahn, Elizabeth D. Bacci, Hayley Karn, Ray Hsieh, Timothy A. Howell, Zelie Bailes, Andrew Fowler, Laurie Lee and Lindsey T. Murray

    Citation: Journal of Patient-Reported Outcomes 2021 5:104

    Content type: Research

    Published on:

  44. Patient-reported outcome measures (PROs) used to measure symptoms of patients with paroxysmal nocturnal hemoglobinuria (PNH) in trials do not measure PNH symptoms comprehensively and do not assess daily fluctu...

    Authors: R. Paola Daly, Jessica J. Jalbert, Shannon Keith, Tara Symonds and Jamile Shammo

    Citation: Journal of Patient-Reported Outcomes 2021 5:102

    Content type: Research

    Published on:

  45. Timely detection of chemotherapy-induced peripheral neuropathy (CIPN) is critical to effectively tailor chemotherapy dose levels and offer supportive care. The purpose of this secondary analysis was to determi...

    Authors: Robert Knoerl, Emanuele Mazzola, Sandra A. Mitchell, Fangxin Hong, Elahe Salehi, Nadine McCleary, Jennifer A. Ligibel, Kaitlen Reyes and Donna L. Berry

    Citation: Journal of Patient-Reported Outcomes 2021 5:101

    Content type: Research

    Published on:

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