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  1. Visual complaints among people with multiple sclerosis (pwMS) are common, but often difficult to recognize. The Screening Visual Complaints questionnaire (SVCq) has been developed to screen for visual complain...

    Authors: Fleur E. van der Feen, Gera A. de Haan, Iris van der Lijn, Anselm B. M. Fuermaier, Thea J. Heersema, Jan F. Meilof and Joost Heutink
    Citation: Journal of Patient-Reported Outcomes 2022 6:36
  2. The value of patient and public involvement and engagement (PPIE) within the development and refinement of outcome measures is becoming increasingly recognized. The aim of this paper is to provide an overview ...

    Authors: Jill Carlton, Tessa Peasgood, Clara Mukuria, Julie Johnson, Margaret Ogden and Wade Tovey
    Citation: Journal of Patient-Reported Outcomes 2022 6:35
  3. The Patient-Reported Outcomes Information System (PROMIS®) is more and more extensively being used in medical literature in patients with an orthopedic fracture. Yet, many articles studied heterogeneous groups...

    Authors: Thymen Houwen, Leonie de Munter, Koen W. W. Lansink and Mariska A. C. de Jongh
    Citation: Journal of Patient-Reported Outcomes 2022 6:34
  4. Regulatory bodies recommend that outcome measures used in Alzheimer’s disease (AD) clinical trials capture clinically meaningful changes for the trial participant. However, commonly used outcome measures do no...

    Authors: S. Saunders, S. Sheehan, G. Muniz-Terrera, S. Luz and C. W. Ritchie
    Citation: Journal of Patient-Reported Outcomes 2022 6:33
  5. The collection of patient-reported outcome measures (PROMs) following arthroplasty is common. PROMs data collection programs seek to maximise completeness in order to minimise selection bias and optimise repre...

    Authors: Ian A. Harris, Yi Peng, Kara Cashman, Ilana Ackerman, Emma Heath, Neville Rowden and Stephen E. Graves
    Citation: Journal of Patient-Reported Outcomes 2022 6:32
  6. Bowel urgency, the sudden or immediate need to have a bowel movement, is a common, bothersome and disruptive symptom of ulcerative colitis (UC). UC treatment goals include control of urgency; however, it is no...

    Authors: Marla C. Dubinsky, Peter M. Irving, Remo Panaccione, April N. Naegeli, Alison Potts-Bleakman, Vipin Arora, Mingyang Shan and Simon Travis
    Citation: Journal of Patient-Reported Outcomes 2022 6:31
  7. The current service metrics used to evaluate quality in emergency care do not account for specific healthcare outcome goals for older people living with frailty. These have previously been classified under the...

    Authors: James David van Oppen, Abdullah Alshibani, Timothy John Coats, Blair Graham, Patricia Holch, Jagruti Lalseta, Nicola Mackintosh, Vivien Richardson, Peter Riley, Jose M. Valderas and Simon Paul Conroy
    Citation: Journal of Patient-Reported Outcomes 2022 6:30
  8. Young people in different healthcare settings are positive about using electronic patient-reported outcomes (ePROs), which are meant to increase the effectiveness and safety of interventions from the patient’s...

    Authors: Petra V. Lostelius, Magdalena Mattebo, Anne Söderlund, Åsa Revenäs and Eva Thors Adolfsson
    Citation: Journal of Patient-Reported Outcomes 2022 6:29
  9. Over a third of people living with HIV (PLHIV) have suboptimal adherence to antiretroviral therapy (ART). Measures of barriers to ART adherence often lack comprehensiveness. To help manage ART adherence barrie...

    Authors: Kim Engler, Serge Vicente, Kedar K. V. Mate, David Lessard, Sara Ahmed and Bertrand Lebouché
    Citation: Journal of Patient-Reported Outcomes 2022 6:28
  10. People living with HIV (PLWH) are generally known to suffer from a lower quality of life compared to the one of general population, but still very few is known about the self-perception of quality of life when...

    Authors: C. Seguiti, P. F. Salvo, E. Di Stasio, S. Lamonica, A. L. Fedele, S. Manfrida, N. Ciccarelli, B. Corvari, C. De Luca, L. Tartaglione, D. Pitocco, R. Cauda and A. Cingolani
    Citation: Journal of Patient-Reported Outcomes 2022 6:27
  11. We aimed to create a questionnaire to assess the health-related quality of life including functioning, symptoms, and general health status of adult patients with current or previous COVID-19. Here, we report o...

    Authors: Cecilie Delphin Amdal, Katherine Taylor, Dagmara Kuliś, Ragnhild Sørum Falk, Andrew Bottomley, Juan Ignacio Arraras, James Harold Barte, Anne Sophie Darlington, Kristin Hofsø, Bernard Holzner, Nina Marie Høyning Jørgensen, Melissa Paulita Mariano, Madeline Pe, Claire Piccinin, Nicola Riccetti, Melanie Schranz…
    Citation: Journal of Patient-Reported Outcomes 2022 6:26
  12. Childhood asthma is an important unmet need. To date, patient-reported outcome measures (PROMs) for children with asthma have used a combination of caregiver or proxy-reported and self-reported measures. No co...

    Authors: Marci Clark, Carla Romano, Oyebimpe Olayinka-Amao, Diane Whalley, Rebecca Crawford, Purnima Pathak, Caterina Brindicci, Kristin Garg, Kattayoun Kordy, Francois Everhard, Francesco Patalano, Zach Roesler, Thomas Sutton, Oskar Göransson, Ross Landles, Christel Naujoks…
    Citation: Journal of Patient-Reported Outcomes 2022 6:25
  13. Immune thrombocytopenia (ITP) is primarily considered a bleeding disorder; its impact on patients’ health-related quality of life (HRQoL) is under-recognized. We aimed to assess how aligned patient and physici...

    Authors: Prantar Chakrabarti, Biju George, Chandrakala Shanmukhaiah, Lalit Mohan Sharma, Shashank Udupi and Waleed Ghanima
    Citation: Journal of Patient-Reported Outcomes 2022 6:24
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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
  32. 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
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
  44. 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
  45. 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
  46. 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
  47. 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
  48. 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

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