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Journal of Patient-Reported Outcomes
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  1. The ability to communicate is a prerequisite for participation in today’s society. To measure participation in adults with communication disorders, the Communicative Participation Item Bank (CPIB) was develope...

    Authors: Nicole ter Wal, Lizet van Ewijk, Johanna M.A. Visser-Meily, Anna Volkmer, Ellen Gerrits and Caroline B. Terwee
    Citation: Journal of Patient-Reported Outcomes 2023 7:49
    Content type: Review Published on:

  2. Symptom expression in SARS-CoV-2 infection (COVID-19) may affect patients already symptomatic with cancer. Patient-reported outcomes (PROs) can describe symptom burden during the acute and postacute stages of ...

    Authors: Loretta A. Williams, Meagan S. Whisenant, Tito R. Mendoza, Angela E. Peek, Donna Malveaux, Donna K. Griffin, Darcy A. Ponce, Bruno Palma Granwehr, Ajay Sheshadri, Katherine A. Hutcheson, Sara M. Ali, Susan K. Peterson, John V. Heymach, Charles S. Cleeland and Ishwaria M. Subbiah
    Citation: Journal of Patient-Reported Outcomes 2023 7:48
    Content type: Original Report Published on:

  4. COVID-19 put older individuals at high risk for morbidity and mortality, isolation, reduced coping, and lower satisfaction with life. Many older adults experienced social isolation, fear, and anxiety. We hypot...

    Authors: Nasreen Lalani, Xu Dongjuan, Yun Cai and Greg W. Arling
    Citation: Journal of Patient-Reported Outcomes 2023 7:46
    Content type: Research Published on:

  5. The Symptoms of Infection with Coronavirus-19 (SIC) is a 30-item patient-reported outcome (PRO) measure scored by body system composites to assess signs/symptoms of coronavirus disease 2019 (COVID-19). In addi...

    Authors: Eric K.H. Chan, Valerie Williams, Carla Romano, Sheri Fehnel, Ashley F. Slagle, Jeffrey Stoddard, Jerald Sadoff, Margaret Mayorga, Sandy Lewis, Stuart Yarr, Jia Ma, Yan Liu, Eva G. Katz, Pauline McNulty, Ilse van Dromme and Kelly McQuarrie
    Citation: Journal of Patient-Reported Outcomes 2023 7:45
    Content type: Research Published on:

  6. There has been an increased significance on patient-reported outcomes in clinical settings. We aimed to evaluate the feasibility of administering patient-reported outcome measures by computerized adaptive test...

    Authors: Riyad Bin Rafiq, Susan Yount, Sara Jerousek, Elliot J. Roth, David Cella, Mark V. Albert and Allen W. Heinemann
    Citation: Journal of Patient-Reported Outcomes 2023 7:44
    Content type: Research Published on:

  7. Fear of Hypoglycemia (FoH) in people with diabetes has a significant impact on their quality of life, psychological well-being, and self-management of disease. There are a few questionnaires assessing FoH in p...

    Authors: Jingwen Liu, Jiat-Ling Poon, Jeoffrey Bispham, Magaly Perez-Nieves, Allyson Hughes, Katherine Chapman, Beth Mitchell, Korey Hood, Frank Snoek and Lawrence Fisher
    Citation: Journal of Patient-Reported Outcomes 2023 7:43
    Content type: Research Published on:

  8. Cancer and its treatment can have significant impacts on health status, quality of life and functioning of patients. Direct information from patients regarding these aspects can be collected via electronic pla...

    Authors: Amelia Payne, Ashley Horne, Neil Bayman, Fiona Blackhall, Layla Bostock, Clara Chan, Joanna Coote, Marie Eaton, Jacqueline Fenemore, Fabio Gomes, Emma Halkyard, Margaret Harris, Colin Lindsay, Delyth McEntee, Hilary Neal, Laura Pemberton…
    Citation: Journal of Patient-Reported Outcomes 2023 7:42
    Content type: Research Published on:

  9. The use of patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) provide health providers with valuable feedback on how to improve clinical care and patient outcomes. This pa...

    Authors: Anna-Leena Lohiniva, Sanna Isosomppi, Sini Pasanen and Jussi Sutinen
    Citation: Journal of Patient-Reported Outcomes 2023 7:41
    Content type: Research Published on:

  10. Previous research on concepts that are important to people living with early-stage Parkinson’s indicated that ‘functional’ slowness, fine motor skills, and subtle gait abnormalities are cardinal concepts that are...

    Authors: Thomas Morel, Sophie Cleanthous, John Andrejack, Roger A. Barker, Milton Biagioni, Geraldine Blavat, Bastiaan R. Bloem, Babak Boroojerdi, William Brooks, Paul Burns, Stefan Cano, Casey Gallagher, Lesley Gosden, Carroll Siu, Ashley F. Slagle, Natasha Ratcliffe…
    Citation: Journal of Patient-Reported Outcomes 2023 7:40
    Content type: Research Published on:

  11. Sleep disturbance, pain, and fatigue are key symptoms/impacts of axial spondyloarthritis (axSpA). Three customized Patient-Reported Outcomes Measurement Information System (PROMIS®) Short Forms (Sleep Disturbance...

    Authors: Amy Findley, Jessica M. Middlehurst, Chloe A. Howse, Molly J. Clifford, William Neill, Sophi Tatlock, Wen-Hung Chen, Marguerite G. Bracher and Dharm S. Patel
    Citation: Journal of Patient-Reported Outcomes 2023 7:39
    Content type: Research Published on:

  12. Patients with Dupuytren disease experience various activity limitations. Treatment aims to reduce finger joint contractures to improve hand function and activity performance. For assessing improvement differen...

    Authors: Anna Lauritzson, David Eckerdal and Isam Atroshi
    Citation: Journal of Patient-Reported Outcomes 2023 7:38
    Content type: Research Published on:

  13. The BREAST-Q is the most used patient-reported outcome measure (PROM) in breast cancer surgery. The purposes of this study were to re-examine the content validity of BREAST-Q cancer modules (mastectomy, lumpec...

    Authors: Manraj N. Kaur, Sabrina Chan, Louise Bordeleau, Toni Zhong, Elena Tsangaris, Andrea L. Pusic, Stefan J. Cano and Anne F. Klassen
    Citation: Journal of Patient-Reported Outcomes 2023 7:37
    Content type: Research Published on:

  14. The World Health Organization Disability Assessment Schedule (WHODAS 2.0) is a generic questionnaire that captures health and disability-related functioning information corresponding to six major life domains: Co...

    Authors: Paulina Norén, Jan Karlsson, Emma Ohlsson-Nevo, Margareta Möller and Liselotte Hermansson
    Citation: Journal of Patient-Reported Outcomes 2023 7:36
    Content type: Research Published on:

  15. The Patient-Reported Outcomes Measurement Information System (PROMIS®) has the potential to harmonize the measurement of health-related quality of life (HRQL) across medical conditions. We evaluated responsive...

    Authors: Caroline B. Terwee, Esmee M. van der Willik, Fenna van Breda, Brigit C. van Jaarsveld, Marlon van de Putte, Isabelle W. Jetten, Friedo W. Dekker, Yvette Meuleman and Frans J. van Ittersum
    Citation: Journal of Patient-Reported Outcomes 2023 7:35
    Content type: Research Published on:

  16. No available studies demonstrate validity and meaningful change thresholds of Work Productivity and Activity Impairment (WPAI) questionnaire in patients with migraine. In this post-hoc analysis, we assessed re...

    Authors: Janet H. Ford, Wenyu Ye, David W. Ayer, Xiaojuan Mi, Swati Bhandari, Dawn C. Buse and Richard B. Lipton
    Citation: Journal of Patient-Reported Outcomes 2023 7:34
    Content type: Research Published on:

  17. There is considerable burden of illness in hereditary angioedema (HAE). However, instruments to assess health-related quality of life (HRQoL) in HAE are limited. The Angioedema Quality of Life Questionnaire (A...

    Authors: Magdalena Vanya, Maureen Watt, Saeid Shahraz, Charlotte E. Kosmas, Stephanie Rhoten, Sara Costa-Cabral, Joan Menauthoril, Giovanna Devercelli and Karsten Weller
    Citation: Journal of Patient-Reported Outcomes 2023 7:33
    Content type: Research Published on:

  18. In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement o...

    Authors: Lorynn Teela, Lieke E. Verhagen, Hedy A. van Oers, Esmée E. W. Kramer, Joost G. Daams, Mariken P. Gruppen, Maria J. Santana, Martha A. Grootenhuis and Lotte Haverman
    Citation: Journal of Patient-Reported Outcomes 2023 7:32
    Content type: Review Published on:

  19. The novel Coronavirus (COVID-19) has continued to present a significant burden to global public health efforts. The purpose of this study was to estimate the health-related quality of life, disability, and hea...

    Authors: Casey R. Tak
    Citation: Journal of Patient-Reported Outcomes 2023 7:31
    Content type: Research Published on:

  21. Long Covid is an unknown illness which has been shown to affect sufferers regardless of mild initial COVID-19 or age. There is still a lot unknown about long COVID illness. There has been a call to understand ...

    Authors: Lilian Skilbeck, Christopher Spanton and Michael Paton
    Citation: Journal of Patient-Reported Outcomes 2023 7:30
    Content type: Research Published on:

  22. The COVID-19 pandemic presents a unique, amplified threat to those living with a cancer diagnosis, but personal factors may play a role in how this affects well-being. This cross-sectional study (1) describes ...

    Authors: Erica E. Fortune, Alexandra K. Zaleta and Victoria G. Morris
    Citation: Journal of Patient-Reported Outcomes 2023 7:29
    Content type: Research Published on:

  23. The Venous Clinical Severity Score (VCSS) and the Venous Disability Score (VDS) represent assessment tools for chronic venous disease (CVD) combining physician and patient reported outcomes. To date, German ve...

    Authors: Amun Hofmann, Julia Deinsberger, Philip Kienzl, Eva Rigler, Florian Anzengruber and Benedikt Weber
    Citation: Journal of Patient-Reported Outcomes 2023 7:28
    Content type: Research Published on:

  24. A faecal or urinary ostomy may be lifesaving. However, it involves significant bodily change, and the adjustment process to life with an ostomy includes a broad spectre of physical and psychosocial challenges....

    Authors: Kirsten Lerum Indrebø, Anny Aasprang, Torill Elin Olsen and John Roger Andersen
    Citation: Journal of Patient-Reported Outcomes 2023 7:27
    Content type: Research Published on:

  25. In the transition towards value-based healthcare, patient-reported outcome and experience measures (PROM and PREM) are recommended by international collaborations and government programs to guide clinical prac...

    Authors: Anne L. Depla, Bettine Pluut, Marije Lamain-de Ruiter, Anna W. Kersten, Inge M. Evers, Arie Franx and Mireille N. Bekker
    Citation: Journal of Patient-Reported Outcomes 2023 7:26
    Content type: Research Published on:

  26. Discrepancies in symptom assessment between providers and patients are reported in cancer care, and the use of patient-reported outcome measures (PROMs) has been recommended for patients receiving palliative c...

    Authors: Nao Ito, Yoko Ishii, Maho Aoyama, Hirofumi Abo, Akihiro Sakashita, Yuko Matsumura and Mitsunori Miyashita
    Citation: Journal of Patient-Reported Outcomes 2023 7:25
    Content type: Research Published on:

  27. The use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in pediatric clinical practice can enhance clinical care and bring children and families’ perspectives into...

    Authors: Erin McCabe, Sarah Rabi, Sumedh Bele, Jennifer D. Zwicker and Maria J. Santana
    Citation: Journal of Patient-Reported Outcomes 2023 7:24
    Content type: Research Published on:

  28. The EuroQol Group has developed an extended version of the EQ-5D-Y-3L with five response levels for each of its five dimensions (EQ-5D-Y-5L). The psychometric performance has been reported in several studies f...

    Authors: Lucky G. Ngwira, Hendramoorthy Maheswaran, Janine Verstraete, Stavros Petrou, Louis Niessen and Sarah C. Smith
    Citation: Journal of Patient-Reported Outcomes 2023 7:22
    Content type: Research Published on:

  29. Tardive dyskinesia (TD) is a persistent and potentially disabling movement disorder associated with antipsychotic use. Data from RE-KINECT, a real-world study of antipsychotic-treated outpatients, were analyze...

    Authors: Caroline M. Tanner, Stanley N. Caroff, Andrew J. Cutler, William R. Lenderking, Huda Shalhoub, Véronique Pagé, Ericha G. Franey, Michael Serbin and Chuck Yonan
    Citation: Journal of Patient-Reported Outcomes 2023 7:21
    Content type: Research Published on:

  30. Within pediatric health care services, Patient-reported Outcomes (PROs) regarding the patient’s health status are mainly used for research purposes in a chronic care setting. However, PROs are also applied in ...

    Authors: Rikke Bjerre Lassen, Caroline Bruun Abild, Kurt Kristensen, Lene Juel Kristensen, Jens Thusgård Hørlück and Annesofie Lunde Jensen
    Citation: Journal of Patient-Reported Outcomes 2023 7:20
    Content type: Research Published on:

  31. Internationally, patient-reported outcome measures are increasingly applied in clinical settings to patients undergoing total knee arthroplasty (TKA) and total hip arthroplasty (THA). Current literature does n...

    Authors: Laura Bjerg Mikkelsen, Niels Wedderkopp and Louise Schlosser Mose
    Citation: Journal of Patient-Reported Outcomes 2023 7:19
    Content type: Research Published on:

  32. While there are a few studies on measurement properties of PROMIS short forms for pain and function in patients with knee osteoarthritis, nothing is known about the measurement properties in patients with knee...

    Authors: Anika Stephan, Vincent A. Stadelmann, Stefan Preiss and Franco M. Impellizzeri
    Citation: Journal of Patient-Reported Outcomes 2023 7:18
    Content type: Research Published on:

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2023 7:47

  33. To capture the broad range of treatment burden issues experienced by adolescent and adult people with hemophilia (PWH), the Hemophilia Treatment Experience Measure (Hemo-TEM) was developed. We describe the dev...

    Authors: Meryl Brod, Donald M. Bushnell, Jesper Skov Neergaard, Laura Tesler Waldman and Anne Kirstine Busk
    Citation: Journal of Patient-Reported Outcomes 2023 7:17
    Content type: Research Published on:

  34. The present study aimed at the translation and cross-cultural adaptation of six PROMIS® pediatric self- and proxy- item banks and short forms to universal German: anxiety (ANX), anger (ANG), depressive symptoms (...

    Authors: J. Devine, A. Kaman, T. L. Seum, F. Zoellner, M. Dabs, V. Ottova-Jordan, L. K. Schlepper, A.-C. Haller, S. Topf, M. Boecker, J. Schuchard, C. B. Forrest and Ulrike Ravens-Sieberer
    Citation: Journal of Patient-Reported Outcomes 2023 7:16
    Content type: Research Published on:

  35. Patient-reported outcome (PRO) measures are important to consider when evaluating treatments, yet there are no PRO measures for patients with acromegaly that have been developed in accordance with US Food and ...

    Authors: Susan Martin, Randall H. Bender, Alan Krasner, Tonya Marmon, Michael Monahan and Lauren Nelson
    Citation: Journal of Patient-Reported Outcomes 2023 7:15
    Content type: Research Published on:

  36. Patient-reported outcome measures (PROMs) are standardized and validated self-administered questionnaires that assess whether healthcare interventions and practices improve patients’ health and quality of life...

    Authors: Kalpana Thapa Bajgain, Mungunzul Amarbayan, Krystle Wittevrongel, Erin McCabe, Syeda Farwa Naqvi, Karen Tang, Fariba Aghajafari, Jennifer D. Zwicker and Maria Santana
    Citation: Journal of Patient-Reported Outcomes 2023 7:14
    Content type: Review Published on:

  37. This systematic literature review aimed to identify factors that influence the implementation of electronic patient-reported outcome measures (ePROMs) and patient-reported experience measures (ePREMs) in healt...

    Authors: Ben G. Glenwright, Joshua Simmich, Michelle Cottrell, Shaun P. O’Leary, Clair Sullivan, Jason D. Pole and Trevor Russell
    Citation: Journal of Patient-Reported Outcomes 2023 7:13
    Content type: Review Published on:

  38. Pain and physical health domains included in Patient-Reported Outcomes Measurement Information System® (PROMIS®) can be administered as short forms (SF) or as computer adaptive tests (CAT). CAT is ideal in man...

    Authors: Sadie F. Mason, Mahua Dasgupta, Kathryn E. Flynn, Pippa M. Simpson and Ashima Singh
    Citation: Journal of Patient-Reported Outcomes 2023 7:12
    Content type: Research Published on:

  39. Rheumatic and Musculoskeletal Diseases (RMDs) substantially impact the lives of patients, with complex associations between disease severity and self-perceived health status. In this regard, the Coping with Rh...

    Authors: Diego Benavent, Andrea Jochems, Dora Pascual-Salcedo, Gijs Jochems, Chamaida Plasencia-Rodríguez, Sofia Ramiro, Wim van Lankveld, Alejandro Balsa and Victoria Navarro-Compán
    Citation: Journal of Patient-Reported Outcomes 2023 7:11
    Content type: Research Published on:

  40. Self-efficacy is important for managing chronic conditions; however, its measurement in pediatric healthcare settings remains rare. The goal of this project was to adapt an existing disease-agnostic adult self...

    Authors: Carolyn C. Foster, Courtney K. Blackwell, Kristin Kan, Luis Morales, David Cella and Sara Shaunfield
    Citation: Journal of Patient-Reported Outcomes 2023 7:10
    Content type: Research Published on:

  42. Patient-reported outcome measures are needed to assess the impact of treatments for COVID-19 on symptoms. The ACTIV-2 COVID-19 Symptom Diary (ACSD) is being used in the ongoing Accelerating COVID-19 Therapeuti...

    Authors: Louis S. Matza, Katie D. Stewart, April N. Naegeli, Kayla M. Mills, Karin S. Coyne, Kara W. Chew, Michael D. Hughes and Davey M. Smith
    Citation: Journal of Patient-Reported Outcomes 2023 7:8
    Content type: Research Published on:

  43. The Symptoms of Infection with Coronavirus-19 (SIC) is a 30-item patient-reported outcome measure to evaluate the presence and severity of COVID-19 signs/symptoms in adults. This study expanded the context of ...

    Authors: Carla Romano, Margaret Mayorga, Javier Ruiz-Guiñazú, Géralyn C. Trudel, Sheri Fehnel, Kelly McQuarrie, Eric K. H. Chan and Eva G. Katz
    Citation: Journal of Patient-Reported Outcomes 2023 7:7
    Content type: Research Published on:

  44. The chest-related electronic patient reported outcome (ePRO) diary was recently developed to assess chest-related symptoms experienced by pediatric and adolescent populations during upper respiratory tract inf...

    Authors: Rob Arbuckle, Tim Shea, Kate Burrows, Chris Marshall, Andrew Trigg, Julia Stein and Helmut H. Albrecht
    Citation: Journal of Patient-Reported Outcomes 2023 7:6
    Content type: Research Published on:

  45. Decision-making concerning relatives undergoing surgery is challenging. It remains unclear to what extent implicated next of kin eventually regret their decisions and how this regret is assessed. Our aim was t...

    Authors: Julien Maillard, Tal S. Beckmann, Martin R. Tramèr and Nadia Elia
    Citation: Journal of Patient-Reported Outcomes 2023 7:5
    Content type: Research Published on:

  46. Although the psychometric properties of patient-reported outcome measures (e.g. the 22-item Sino-nasal Outcomes Test [SNOT-22]) in chronic rhinosinusitis with nasal polyps (CRSwNP) have been defined, these def...

    Authors: Wytske Fokkens, Andrew Trigg, Stella E. Lee, Robert H. Chan, Zuzana Diamant, Claire Hopkins, Peter Howarth, Valerie Lund, Bhabita Mayer, Ana R. Sousa, Steve Yancey and Maggie Tabberer
    Citation: Journal of Patient-Reported Outcomes 2023 7:4
    Content type: Research Published on:

  47. Patient-reported outcome measures (PROMs) are standardized instruments used for assessing patients’ perspectives on their health status at a point in time, including their health-related quality of life, sympt...

    Authors: Brigitte Baragar, Kara Schick-Makaroff, Braden Manns, Shannan Love, Maoliosa Donald, Maria Santana, Bonnie Corradetti, Juli Finlay, Jeffrey A. Johnson, Michael Walsh and Meghan J. Elliott
    Citation: Journal of Patient-Reported Outcomes 2023 7:3
    Content type: Research Published on:

  48. With increasing survival rates in pediatric oncology, the need to monitor health-related quality of life (HRQOL) is becoming even more important. However, available patient-reported outcome measures (PROMs) ha...

    Authors: Maria Rothmund, Andreas Meryk, Gerhard Rumpold, Roman Crazzolara, Samantha Sodergren, Anne-Sophie Darlington and David Riedl
    Citation: Journal of Patient-Reported Outcomes 2023 7:2
    Content type: Review Published on:

  49. The Disabilities of the Arm, Shoulder and Hand (DASH) questionnaire has been translated and cross-culturally adapted to Afrikaans for the Western Cape, within the public health service context of South Africa....

    Authors: Susan de Klerk, Christina Jerosch-Herold, Helen Buchanan and Lana van Niekerk
    Citation: Journal of Patient-Reported Outcomes 2023 7:1
    Content type: Research Published on:

  50. Acromegaly is a rare chronic endocrine disorder that can lead to significant quality of life (QoL) impairment and persistent symptomatology in both biochemically uncontrolled as well as in cured or controlled ...

    Authors: Maximilian Cosma Gliga, Zsuzsanna Reti, Camelia Gliga and Ionela Maria Pascanu
    Citation: Journal of Patient-Reported Outcomes 2022 6:130
    Content type: Research Published on:
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