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  1. To add context to the impact of medical conditions, it is important to interpret and compare health outcomes across studies and populations. We aimed to determine Dutch reference values for the Patient-Reporte...

    Authors: Ellen B. M. Elsman, Leo D. Roorda, Martine H. P. Crins, Maarten Boers and Caroline B. Terwee

    Citation: Journal of Patient-Reported Outcomes 2021 5:38

    Content type: Research

    Published on:

  2. We evaluated the impact of menopause-associated vasomotor symptoms (VMS) on sleep. We also sought to establish the content validity of Patient-Reported Outcomes Measurement Information System (PROMIS) short fo...

    Authors: Marci English, Boyka Stoykova, Christina Slota, Lynda Doward, Emad Siddiqui, Rebecca Crawford and Dana DiBenedetti

    Citation: Journal of Patient-Reported Outcomes 2021 5:37

    Content type: Research

    Published on:

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:42

  3. Patient-reported outcomes (PROs) can provide valuable information about drug benefit-risk tradeoffs from the patient perspective and are particularly important to patients with breast cancer due to its symptom...

    Authors: Kyungwan Hong, Kayleigh R. Majercak, Ester Villalonga-Olives and Eleanor M. Perfetto

    Citation: Journal of Patient-Reported Outcomes 2021 5:36

    Content type: Research

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  4. Post-stroke fatigue (PSF) is commonly reported and described as disabling by patients recovering from stroke. However, a major challenge is how to accurately diagnose and assess PSF. Therefore, the aim of this...

    Authors: Ingrid Johansen Skogestad, Marit Kirkevold, Petra Larsson, Christine Råheim Borge, Bent Indredavik, Caryl L. Gay and Anners Lerdal

    Citation: Journal of Patient-Reported Outcomes 2021 5:35

    Content type: Research

    Published on:

  5. The International FD/MAS Consortium recently encouraged using the Pediatric Quality of Life Inventory (PEDS-QL) and the Hospital Anxiety and Depression scales (HADS) in clinical care. This study examines score...

    Authors: Amanda Konradi

    Citation: Journal of Patient-Reported Outcomes 2021 5:34

    Content type: Research

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  6. Fatigue is a key symptom in patients with systemic lupus erythematosus (SLE), and regulatory bodies recommend its assessment in clinical trials of SLE therapies.

    Authors: Regina Rendas-Baum, Nishtha Baranwal, Ashish V. Joshi, Josephine Park and Mark Kosinski

    Citation: Journal of Patient-Reported Outcomes 2021 5:33

    Content type: Research

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  7. It is rare to find HIV/AIDS care providers in sub-Saharan Africa routinely providing mental health services, yet 8–30% of the people living with HIV have depression. In an ongoing trial to assess integration o...

    Authors: Kenneth R. Katumba, Yoko V. Laurence, Patrick Tenywa, Joshua Ssebunnya, Agata Laszewska, Judit Simon, Anna Vassall, Eugene Kinyanda and Giulia Greco

    Citation: Journal of Patient-Reported Outcomes 2021 5:32

    Content type: Research

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  8. Patient-reported outcome measurements (PROM) are instruments that seek a patient’s health or functional status. Inclusion of standardized PROMs in research studies and clinical practice provides a more compreh...

    Authors: Beth Carleo, Kristian Anderson, Carol Parnell Prevost and Katherine A. Pohlman

    Citation: Journal of Patient-Reported Outcomes 2021 5:31

    Content type: Short report

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  9. Lower limb deformities include conditions such as leg length discrepancy, lower limb deficiency and associated angular and rotational deformities of the hips, knees, ankles and feet. Children with lower limb d...

    Authors: Harpreet Chhina, Anne F. Klassen, Jacek A. Kopec, John Oliffe, Christopher Iobst, Noemi Dahan-Oliel, Aditya Aggarwal, Tim Nunn and Anthony P. Cooper

    Citation: Journal of Patient-Reported Outcomes 2021 5:30

    Content type: Research

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  10. Differences in experiences of care reported by Asian Americans (Asians) compared to non-Hispanic Whites (Whites) may be due to lack of measurement invariance.

    Authors: Mohir Ahmedov, Nadereh Pourat, Honghu Liu and Ron D. Hays

    Citation: Journal of Patient-Reported Outcomes 2021 5:29

    Content type: Research

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  11. Transplantation of HIV-positive (HIV+) donor organs for HIV+ recipients (HIV D+/R+) is now being performed as research in the United States, but raises ethical concerns. While patient-reported outcome measures...

    Authors: Shanti Seaman, Diane Brown, Ann Eno, Sile Yu, Allan B. Massie, Aaron A. R. Tobian, Christine M. Durand, Dorry L. Segev, Albert W. Wu and Jeremy Sugarman

    Citation: Journal of Patient-Reported Outcomes 2021 5:28

    Content type: Research

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  12. Fatigue is a prominent symptom in individuals with chronic lymphocytic leukemia (CLL). This work evaluates the content validity and psychometric properties of the Functional Assessment of Chronic Illness Thera...

    Authors: Daniel Eek, Cristina Ivanescu, Laura Corredoira, Oren Meyers and David Cella

    Citation: Journal of Patient-Reported Outcomes 2021 5:27

    Content type: Research

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  13. Ordinal tasks are increasingly used to explore preferences for health states. This study aimed to determine the suitability of two ordinal preference elicitation tasks (discrete choice experiments (DCE) and be...

    Authors: Helen J. Rogers, Zoe Marshman, Helen Rodd and Donna Rowen

    Citation: Journal of Patient-Reported Outcomes 2021 5:26

    Content type: Research

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  14. An amendment to this paper has been published and can be accessed via the original article.

    Authors: Dana Drzayich Antol, Adrianne Waldman Casebeer, Raya Khoury, Todd Michael, Andrew Renda, Sari Hopson, Aparna Parikh, Alisha Stein, Mary Costantino, Stephen Stemkowski and Mikele Bunce

    Citation: Journal of Patient-Reported Outcomes 2021 5:25

    Content type: Correction

    Published on:

    The original article was published in Journal of Patient-Reported Outcomes 2018 2:29

  15. Research on the management of complications of chemotherapy is important in facilitating the growing approaches to individualized patient management. Hence the need to document patient’s perspectives about che...

    Authors: Adriane Kamulegeya, Damalie Nakanjako, Jackson Orem and Harriet Mayanja-Kizza

    Citation: Journal of Patient-Reported Outcomes 2021 5:24

    Content type: Research

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  16. Scrolling is a perceived barrier in the use of bring your own device (BYOD) to capture electronic patient reported outcomes (ePROs). This study explored the impact of scrolling on the measurement equivalence o...

    Authors: Saeid Shahraz, Tan P. Pham, Marc Gibson, Marie De La Cruz, Munther Baara, Sachin Karnik, Christopher Dell, Sheryl Pease, Suyash Nigam, Joseph C. Cappelleri, Craig Lipset, Patrick Zornow, Jeff Lee and Bill Byrom

    Citation: Journal of Patient-Reported Outcomes 2021 5:23

    Content type: Research

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  17. Even though traumatization is linked to substantially reduced health-related quality of life, help-seeking and service utilization among trauma survivors are very low. To date, there has not been available in ...

    Authors: Karen Birna Thorvaldsdottir, Sigridur Halldorsdottir, Rhonda M. Johnson, Sigrun Sigurdardottir and Denise Saint Arnault

    Citation: Journal of Patient-Reported Outcomes 2021 5:22

    Content type: Research

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  18. Pectus excavatum (PE) is the most common congenital chest wall deformity. Most individuals with PE suffer from psychosocial problems, with low self-esteem and poor body image. Correctional surgery for PE is av...

    Authors: Louise Norlander, Jan Karlsson, Agneta Anderzén-Carlsson, Mårten Vidlund, Mats Dreifaldt, Jesper Andreasson and Ann-Sofie Sundqvist

    Citation: Journal of Patient-Reported Outcomes 2021 5:21

    Content type: Research

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  19. An amendment to this paper has been published and can be accessed via the original article.

    Authors: Minji K. Lee, Benjamin D. Schalet, David Cella, Kathleen J. Yost, Amylou C. Dueck, Paul J. Novotny and Jeff A. Sloan

    Citation: Journal of Patient-Reported Outcomes 2021 5:20

    Content type: Correction

    Published on:

    The original article was published in Journal of Patient-Reported Outcomes 2020 4:106

  20. A previous qualitative assessment of the psychosocial consequences of labelling hypertension describes the diagnosis of hypertension as a labelling event with potential unintended negative long-term psychosoci...

    Authors: János Valery Gyuricza, Karl Bang Christensen, Ana Flávia Pires Lucas d’Oliveira and John Brodersen

    Citation: Journal of Patient-Reported Outcomes 2021 5:19

    Content type: Research

    Published on:

  21. Many patients with hand osteoarthritis (HOA) experience reduced health-related quality of life. This study sought to better understand the disease and treatment experience of individuals with HOA, explore any ...

    Authors: Charlotte Panter, Pamela Berry, Deven Chauhan, Sofia Fernandes, Sally Gatsi, Josephine Park, Jane R. Wells and Rob Arbuckle

    Citation: Journal of Patient-Reported Outcomes 2021 5:18

    Content type: Research

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  22. The 15- and 10-item short forms of the Singapore Caregiver Quality of Life Scale (SCQOLS-15 and SCQOLS-10) were recently developed as a quick assessment of caregiver quality of life. Reference values describin...

    Authors: Chun Fan Lee, Hwee Lin Wee, Irene Teo, Geok Ling Lee, Julian Thumboo, Yin Bun Cheung and Shirlyn H. S. Neo

    Citation: Journal of Patient-Reported Outcomes 2021 5:17

    Content type: Research

    Published on:

  23. Epilepsy is one of the most common neurological disorders with physical, emotional, and social consequences. Previous studies indicate that epilepsy symptoms can highly affect the epileptic patients’ satisfact...

    Authors: Bahareh Honari, Seyed Mehran Homam, Maryam Nabipour, Zahra Mostafavian, Arezou Farajpour and Nyusha Sahbaie

    Citation: Journal of Patient-Reported Outcomes 2021 5:16

    Content type: Research

    Published on:

  24. Patient Reported Outcome Measures (PROMs) are questionnaires that could be used in palliative care (PC) to evaluate patient well-being and monitor their care. PROMs enable a focus on what is important to patie...

    Authors: Merli Laissaar, Riina Hallik, Pille Sillaste, Ulvi Ragun, Mari-Leen Pärn and Kaiu Suija

    Citation: Journal of Patient-Reported Outcomes 2021 5:15

    Content type: Research

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  25. Development is rapid in the first years of life. Developmental delays appearing during this critical period have the potential to persist throughout the child’s life. Available standardized assessments for thi...

    Authors: Catherine R. Hoyt, Allison J. L’Hotta, Anna H. Bauer, Chih-Hung Chang, Taniya E. Varughese, Regina A. Abel and Allison A. King

    Citation: Journal of Patient-Reported Outcomes 2021 5:14

    Content type: Research

    Published on:

  26. Recap of atopic eczema (RECAP) is a patient-reported outcome measure (PROM) assessing eczema control. Long-term control of eczema is one of the four core outcome domains for atopic eczema trials. This instrume...

    Authors: Michaela Gabes, Christina Tischer, Anne Herrmann, Laura Howells and Christian Apfelbacher

    Citation: Journal of Patient-Reported Outcomes 2021 5:13

    Content type: Short report

    Published on:

  27. Several options for granulocyte colony-stimulating factor (G-CSF) prophylaxis of chemotherapy-induced febrile neutropenia are available to patients worldwide. We have developed a novel patient-reported outcome...

    Authors: Aylin Yucel, Anne Skalicky, Olabimpe Ruth Eseyin, Emre Yucel, Rajesh Belani and Mark Bensink

    Citation: Journal of Patient-Reported Outcomes 2021 5:10

    Content type: Research

    Published on:

  28. Chronic Hypersensitivity Pneumonitis (CHP) is caused by an immune mediated response in the lung tissue after exposure to an inhaled environmental antigenic stimulant. We previously documented the ways in which...

    Authors: Kerri I. Aronson, Maha Ali, Evgeniya Reshetynak, Robert J. Kaner, Fernando J. Martinez, Monika M. Safford and Laura C. Pinheiro

    Citation: Journal of Patient-Reported Outcomes 2021 5:9

    Content type: Research

    Published on:

  29. The patient is the person who experiences both the processes and the outcomes of care. Information held by the patient is vital for clinical and self-management, improving health outcomes, delivery of care, or...

    Authors: Maria J. Santana and Darrell J. Tomkins

    Citation: Journal of Patient-Reported Outcomes 2021 5:8

    Content type: Short report

    Published on:

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:74

  30. Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe per...

    Authors: Ryan Lange, Abigail Kumagai, Sara Weiss, Katherine B. Zaffke, Sherry Day, Donna Wicker, Ashley Howson, K. Thiran Jayasundera, Lori Smolinski, Christina Hedlich, Paul P. Lee, Robert W. Massof, Joan A. Stelmack, Noelle E. Carlozzi and Joshua R. Ehrlich

    Citation: Journal of Patient-Reported Outcomes 2021 5:7

    Content type: Research

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  31. This paper reports the duration of moderate and severe exacerbations in patients with house dust mite induced allergic asthma and the impact on patients’ quality of life.

    Authors: Andrew Briggs, Shuaib Nasser, Eva Hammerby, Sarah Buchs and J. Christian Virchow

    Citation: Journal of Patient-Reported Outcomes 2021 5:6

    Content type: Research

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  32. As life expectancy of people with Down syndrome (DS) increases, so does the risk of Alzheimer’s disease (AD). Identifying symptoms and tracking disease progression is especially challenging whenever levels of ...

    Authors: Kari Knox, Justin Stanley, James A. Hendrix, Hampus Hillerstrom, Taylor Dunn, Jillian Achenbach, Brian A. Chicoine, Florence Lai, Ira Lott, Sanja Stanojevic, Susan E. Howlett and Kenneth Rockwood

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

    Content type: Research

    Published on:

  33. In oncology practice, eliciting the patient’s perspective on their quality of life (QOL) adds important information and value to their treatment and care. The European Organization for Research and Treatment o...

    Authors: Jasmine Davda, Hillary Kibet, Emmah Achieng, Lawrence Atundo and Truphena Komen

    Citation: Journal of Patient-Reported Outcomes 2021 5:4

    Content type: Research

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  34. Hereditary transthyretin (hATTR) amyloidosis is a rare, systemic, progressive, and life-threatening disease in which transthyretin proteins misfold and aggregate as insoluble amyloid deposits, disrupting nervo...

    Authors: Andrew Lovley, Kimberly Raymond, Spencer D. Guthrie, Michael Pollock, Vaishali Sanchorawala and Michelle K. White

    Citation: Journal of Patient-Reported Outcomes 2021 5:3

    Content type: Research

    Published on:

  35. Gains in cancer detection and treatment have meant that more patients are now living with both cancer and other chronic health conditions, which may become burdensome. We used the Patient Experience with Treat...

    Authors: R. T. Anderson, D. T. Eton, F. T. Camacho, E. M. Kennedy, C. M. Brenin, P. B. DeGuzman, K. F. Carter, T. Guterbock, K. J. Ruddy and W. F. Cohn

    Citation: Journal of Patient-Reported Outcomes 2021 5:2

    Content type: Research

    Published on:

  36. Patients suffering from exsudative retinal diseases may experience severe central vision loss and this might have impact on their daily activities and quality of life. To measure the disabilities these patient...

    Authors: T. P. Rausch – Koster, A. J. van der Ham, C. B. Terwee, F. D. Verbraak, G. H. M. B. van Rens and R. M. A. van Nispen

    Citation: Journal of Patient-Reported Outcomes 2021 5:1

    Content type: Research

    Published on:

  37. An amendment to this paper has been published and can be accessed via the original article.

    Authors: Carla Dias-Barbosa, Rodolfo Matos, Margaret Vernon, Colleen E. Carney, Andrew Krystal and Jorge Puelles

    Citation: Journal of Patient-Reported Outcomes 2020 4:107

    Content type: Correction

    Published on:

    The original article was published in Journal of Patient-Reported Outcomes 2020 4:100

  38. Researchers and clinicians studying symptoms experienced by people with cancer must choose from various scales. It would be useful to know how the scores on one measure translate to another.

    Authors: Minji K. Lee, Benjamin D. Schalet, David Cella, Kathleen J. Yost, Amylou C. Dueck, Paul J. Novotny and Jeff A. Sloan

    Citation: Journal of Patient-Reported Outcomes 2020 4:106

    Content type: Research

    Published on:

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:20

  39. Caries Impacts and Experiences Questionnaire for Children (CARIES-QC) is a child-centred caries-specific quality of life measure. This study aimed to select, and validate with children, a classification system...

    Authors: Helen J. Rogers, Fiona Gilchrist, Zoe Marshman, Helen D. Rodd and Donna Rowen

    Citation: Journal of Patient-Reported Outcomes 2020 4:105

    Content type: Research

    Published on:

  40. The Diabetes Injection Device Preference Questionnaire (DID-PQ) was designed to assess patient preference between two non-insulin injection devices. In a recent crossover study, people with type 2 diabetes (T2...

    Authors: Kristina S. Boye, Louis S. Matza, Brooke M. Currie and Karin S. Coyne

    Citation: Journal of Patient-Reported Outcomes 2020 4:104

    Content type: Short report

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  41. To develop a predictive risk model (PRM) for patient-reported anxiety after treatment completion for early stage breast cancer suitable for use in practice and underpinned by advances in data science and risk ...

    Authors: Jenny Harris, Edward Purssell, Victoria Cornelius, Emma Ream, Anne Jones and Jo Armes

    Citation: Journal of Patient-Reported Outcomes 2020 4:103

    Content type: Research

    Published on:

  42. Hypertrophic cardiomyopathy (HCM) is a primary myocardial disorder defined by left ventricular hypertrophy that cannot be explained by another cardiac or systemic disease. There is a general lack of knowledge ...

    Authors: Erica Zaiser, Amy J. Sehnert, Ashley Duenas, Sara Saberi, Ella Brookes and Matthew Reaney

    Citation: Journal of Patient-Reported Outcomes 2020 4:102

    Content type: Research

    Published on:

  43. The use of Patient-Reported Outcome Measures (PROMs) in routine clinical care can help ensure symptoms are identified, acknowledged and addressed. In 2007, the provincial cancer agency, Cancer Care Ontario, be...

    Authors: Nicole Montgomery, Doris Howell, Zahra Ismail, Susan J. Bartlett, Michael Brundage, Denise Bryant-Lukosius, Monika Krzyzanowska, Lesley Moody, Claire Snyder and Lisa Barbera

    Citation: Journal of Patient-Reported Outcomes 2020 4:101

    Content type: Research

    Published on:

  44. The intense itching associated with atopic dermatitis (AD) often causes patients to experience severe sleep disturbance. Here, we describe the results of a two-phase concept elicitation and cognitive interview...

    Authors: Carla Dias-Barbosa, Rodolfo Matos, Margaret Vernon, Colleen E. Carney, Andrew Krystal and Jorge Puelles

    Citation: Journal of Patient-Reported Outcomes 2020 4:100

    Content type: Research

    Published on:

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2020 4:107

  45. Physiological and behavioral factors including hunger, satiety, food intake, and cravings are health determinants contributing to obesity. Patient-reported outcome (PRO) measures focused on eating-related fact...

    Authors: John Fastenau, Heather Rozjabek, Shanshan Qin, Lori McLeod, Lauren Nelson, Jia Ma and Nimanee Harris

    Citation: Journal of Patient-Reported Outcomes 2020 4:99

    Content type: Research

    Published on:

  46. Measuring change in health-related quality-of-life (HRQoL) is important to assess the impact of disease and/or treatment. Ecological momentary assessment (EMA) comprises the repeated assessment of momentary HR...

    Authors: Tom H. Oreel, Philippe Delespaul, Iris D. Hartog, José P. S. Henriques, Justine E. Netjes, Alexander B. A. Vonk, Jorrit Lemkes, Michael Scherer-Rath, Hanneke W. M. van Laarhoven, Mirjam A. G. Sprangers and Pythia T. Nieuwkerk

    Citation: Journal of Patient-Reported Outcomes 2020 4:98

    Content type: Research

    Published on:

  47. To evaluate the psychometric and measurement properties of two patient-reported outcome instruments, the menstrual pictogram superabsorbent polymer-containing version 3 (MP SAP-c v3) and Uterine Fibroid Daily ...

    Authors: Claudia Haberland, Anna Filonenko, Christian Seitz, Matthias Börner, Christoph Gerlinger, Helen Doll and Dorothea Wessiepe

    Citation: Journal of Patient-Reported Outcomes 2020 4:97

    Content type: Research

    Published on:

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