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  1. The aim of this systematic review was to describe the prognostic value of patient-reported outcome measures (PROMs) in adult heart-transplant (HT) patients.

    Authors: Bernardo Perez Villa, Sultan Alotaibi, Nicolas Brozzi, Kurt P. Spindler, Jose Navia and Jaime Hernandez-Montfort
    Citation: Journal of Patient-Reported Outcomes 2022 6:23
  2. In our companion paper, we addressed the interplay between caregiver impact, out-of-pocket expenditures, and Duchenne Muscular Dystrophy (DMD) disability. We found that DMD caregiver impact could be characteri...

    Authors: Carolyn E. Schwartz, Roland B. Stark, Katrina Borowiec and Bruce D. Rapkin
    Citation: Journal of Patient-Reported Outcomes 2022 6:22
  3. Providing caregiving support to people with Duchenne muscular dystrophy (DMD) is challenging, beginning in early childhood, and continuing through the progression of multidimensional disability. This study add...

    Authors: Carolyn E. Schwartz, Roland B. Stark, Katrina Borowiec, Ivana F. Audhya and Katherine L. Gooch
    Citation: Journal of Patient-Reported Outcomes 2022 6:21
  4. Patient-reported outcomes (PROs) are used increasingly in routine clinical care and inform policies, reimbursements, and quality improvement. Less is known regarding PRO implementation in routine clinical care...

    Authors: Colby J. Hyland, Ruby Guo, Ravi Dhawan, Manraj N. Kaur, Paul A. Bain, Maria O. Edelen and Andrea L. Pusic
    Citation: Journal of Patient-Reported Outcomes 2022 6:20
  5. The use of Patient-Reported Outcome Measures (PROMs) for individual patient management within clinical practice is becoming increasingly important. New evidence about graphic visualization formats for PROMs sc...

    Authors: Elaine A. C. Albers, Itske Fraterman, Iris Walraven, Erica Wilthagen, Sanne B. Schagen, Iris M. van der Ploeg, Michel W. J. M. Wouters, Lonneke V. van de Poll-Franse and Kelly M. de Ligt
    Citation: Journal of Patient-Reported Outcomes 2022 6:18
  6. Parkinson’s disease (PD) is a chronic, progressive illness with a profound impact on the health-related quality of life (HRQoL). Disease-specific patient-reported HRQoL measures, such as PDQ-39 and its short v...

    Authors: Pantelis Stathis and George Papadopoulos
    Citation: Journal of Patient-Reported Outcomes 2022 6:17
  7. Breast cancer can be a significant challenge for those affected. Knowledge of physical function, social-emotional challenges, and perceived cognitive function based on the cancer treatment regimens may help to...

    Authors: Niklas Paul Grusdat, Alexander Stäuber, Marion Tolkmitt, Jens Schnabel, Birgit Schubotz, Peter Richard Wright, Marc Heydenreich, Dirk-Henrik Zermann and Henry Schulz
    Citation: Journal of Patient-Reported Outcomes 2022 6:16
  8. Diagnostic imaging techniques have to be selected for their accuracy, efficiency, cost-efficiency, and impact on outcome. But beyond that, the choice of non-invasive cardiovascular imaging tests for diagnosing...

    Authors: Thomas Bertrand, Gillian Bartlett-Esquilant, Kady Fischer and Matthias G. Friedrich
    Citation: Journal of Patient-Reported Outcomes 2022 6:15
  9. In this article, we report the cultural adaption and translation of the Integrated Palliative Care Outcome Scale for People with Dementia (IPOS-Dem) into a Swiss-German easy language version for proxy assessme...

    Authors: Frank Spichiger, Anita Keller Senn, Thomas Volken, Philip Larkin and Andrea Koppitz
    Citation: Journal of Patient-Reported Outcomes 2022 6:14
  10. The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is...

    Authors: A. Fuchsia Howard, María-José Torrejón, Kelsey Lynch, Scott M. Beck, Sally Thorne, Leah Lambert, Antony Porcino, Mary A. De Vera, Janine M. Davies, Jonathan Avery, Angela C. Wolff, Melanie McDonald, Joyce W. K. Lee, Penelope Hedges, Mary T. Kelly and Michael McKenzie
    Citation: Journal of Patient-Reported Outcomes 2022 6:13
  11. The purposes of this investigation were to (1) identify the domains of health-related quality of life most impacted in people with RRMS, (2) compare the health-related QOL in people with RRMS to general popula...

    Authors: Erin Faraclas, Jeff Lynn, Jeffery D. Lau and Angela Merlo
    Citation: Journal of Patient-Reported Outcomes 2022 6:12
  12. Fractures of lower extremities are common trauma-related injuries, and have major impact on patients' functional status. A frequently used Patient-Reported Outcome Measure (PROM) to evaluate patients’ function...

    Authors: Julia Ratter, Sylvia Pellekooren, Suzanne Wiertsema, Johanna M. van Dongen, Edwin Geleijn, Vincent de Groot, Frank W. Bloemers, Elise Jansma and Raymond W. J. G. Ostelo
    Citation: Journal of Patient-Reported Outcomes 2022 6:11
  13. PedsQL Infant Scales (PedsQL-I) are used to assess parent-reported health-related quality of life for children younger than 2 years. We determined the feasibility, reliability, and validity of the Japanese ver...

    Authors: Iori Sato, Takafumi Soejima, Mari Ikeda, Kyoko Kobayashi, Ami Setoyama and Kiyoko Kamibeppu
    Citation: Journal of Patient-Reported Outcomes 2022 6:10
  14. Under a societal perspective, disease and treatment attributes that the general public deem important should be considered within value frameworks. The objective was to investigate how members of the general p...

    Authors: Shelagh M. Szabo, Ivana F. Audhya, David Feeny, Peter Neumann, Daniel C. Malone and Katherine L. Gooch
    Citation: Journal of Patient-Reported Outcomes 2022 6:9
  15. In a randomized controlled trial, we previously investigated if melanoma patients receiving checkpoint inhibitors had fewer severe immune-related adverse events (irAEs) when they reported symptoms using electr...

    Authors: Lærke K. Tolstrup, Helle Pappot, Lars Bastholt, Sören Möller and Karin B. Dieperink
    Citation: Journal of Patient-Reported Outcomes 2022 6:8
  16. The 2009 Food and Drug Administration (FDA) patient-reported outcome (PRO) guidance outlines characteristics of rigorous PRO-measure development. There are a number of widely used PRO measures for Systemic Lup...

    Authors: Kayleigh R. Majercak, Eleanor M. Perfetto and Ester Villalonga-Olives
    Citation: Journal of Patient-Reported Outcomes 2022 6:7
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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
  32. 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
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
  44. 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
  45. 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
  46. 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
  47. 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

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