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  1. There is a lack of patient derived, child specific outcome measures to capture what health outcomes are important to children with Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME). We developed a new ...

    Authors: Roxanne M. Parslow, Alison Shaw, Kirstie L. Haywood and Esther Crawley

    Citation: Journal of Patient-Reported Outcomes 2019 3:67

    Content type: Research

    Published on:

  2. Ulcerative colitis (UC) often first presents during adolescence and early adulthood. Primary symptoms of UC are well known, yet similarities and differences of disease experience in adults and adolescents are ...

    Authors: Louise Newton, Jason A. Randall, Theresa Hunter, Shannon Keith, Tara Symonds, Roberta J. Secrest, Wendy J. Komocsar, Sarah E. Curtis, Linda Abetz-Webb, Michael Kappelman and April N. Naegeli

    Citation: Journal of Patient-Reported Outcomes 2019 3:66

    Content type: Research

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  3. Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease characterized by airflow obstruction that leads to shortness of breath and substantial negative impacts on health-related quality o...

    Authors: Susan E. Yount, Charles Atwood, James Donohue, Ron D. Hays, Debra Irwin, Nancy Kline Leidy, Honghu Liu, Karen L. Spritzer and Darren A. DeWalt

    Citation: Journal of Patient-Reported Outcomes 2019 3:65

    Content type: Research

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  4. Carcinoid syndrome is associated with a reduced quality of life that can be attributed to symptoms such as diarrhea and fatigue as well as social and financial issues. This study was conducted to psychometrica...

    Authors: Stacie Hudgens, John Ramage, Matthew Kulke, Emily Bergsland, Lowell Anthony, Martyn Caplin, Kjell Öberg, Marianne Pavel, Jonathon Gable, Phillip Banks, Qi Melissa Yang and Pablo Lapuerta

    Citation: Journal of Patient-Reported Outcomes 2019 3:64

    Content type: Research

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  5. To examine the acceptability of a Patient Reported Outcome Measure (PROM) that assesses perceptions and experiences of implants for breast reconstruction or augmentation, and the feasibility of implementing it...

    Authors: Sze Ng, Maggie Kirkman, Jane Fisher, Andrea Pusic, Emily Parker, Rodney D. Cooter, Elisabeth Elder, Colin Moore, John McNeil and Ingrid Hopper

    Citation: Journal of Patient-Reported Outcomes 2019 3:63

    Content type: Research

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  6. The Bladder Cancer Index (BCI) and Functional Assessment of Cancer Therapy-Bladder-Cystectomy (FACT-Bl-Cys) were developed to measure disease-specific health-related quality of life (HRQOL) in bladder cancer p...

    Authors: Charlotte T. J. Michels, Carl J. Wijburg, Inger L. Abma, J. Alfred Witjes, Janneke P. C. Grutters and Maroeska M. Rovers

    Citation: Journal of Patient-Reported Outcomes 2019 3:62

    Content type: Research

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  7. The use of patient-reported outcome (PRO) could potentially contribute to the reorganization of the health care system. AmbuFlex is a PRO system used in remote patient monitoring, in which questionnaires are s...

    Authors: Liv Marit Valen Schougaard, Caroline Trillingsgaard Mejdahl, Jakob Christensen, Kirsten Lomborg, Helle Terkildsen Maindal, Annette de Thurah and Niels Henrik Hjollund

    Citation: Journal of Patient-Reported Outcomes 2019 3:61

    Content type: Research

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  8. The Memorial Anxiety Scale for Prostate Cancer (MAX-PC, 18 items) was developed to assess anxiety in prostate cancer patients. In the absence of a French version of this scale, we adapted the original English ...

    Authors: Rajae Touzani, Julien Mancini, Jaïs Troïan, Anne-Déborah Bouhnik, Olivier Cussenot, Gwenaelle Gravis and Patricia Marino

    Citation: Journal of Patient-Reported Outcomes 2019 3:60

    Content type: Research

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  9. Hyperhidrosis is estimated to affect ~ 4.8% of the US population, and most patients experience a negative psychological impact. Here, we describe development and psychometric evaluation of a patient-reported o...

    Authors: L. M. Nelson, D. DiBenedetti, D. M. Pariser, D. A. Glaser, A. A. Hebert, H. Hofland, J. Drew, D. Ingolia, K. K. Gillard and S. Fehnel

    Citation: Journal of Patient-Reported Outcomes 2019 3:59

    Content type: Research

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  10. Identifying symptoms experienced throughout the disease trajectory is pivotal to understanding management of patient symptoms. Patient interviews to solicit input from those who have experienced these symptoms...

    Authors: Alvina A. Acquaye, Samuel S. Payén, Elizabeth Vera, Loretta A. Williams, Mark R. Gilbert, Shiao-Pei Weathers and Terri S. Armstrong

    Citation: Journal of Patient-Reported Outcomes 2019 3:58

    Content type: Research

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  11. To evaluate the psychometric characteristics of the 1-month recall Uterine Fibroid Symptom and Health-Related Quality of Life questionnaire (UFS-QOL), including the Revised Activities subscale.

    Authors: Karin S. Coyne, Amanda Harrington, Brooke M. Currie, Jun Chen, Patrick Gillard and James B. Spies

    Citation: Journal of Patient-Reported Outcomes 2019 3:57

    Content type: Research

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  12. Selection of specific patient-reported outcomes (PROs) for cancer patients requires careful consideration to the purpose and population at aim. Here we report the process of choosing which items to include in ...

    Authors: Gry Assam Taarnhøj, Henriette Lindberg, Christoffer Johansen and Helle Pappot

    Citation: Journal of Patient-Reported Outcomes 2019 3:56

    Content type: Research

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  13. To explore the relationship between illness perceptions and self-reported general health of patients with chronic heart disease, using some core elements from the Common Sense Model.

    Authors: Anners Lerdal, Dag Hofoss, Caryl L. Gay and May Solveig Fagermoen

    Citation: Journal of Patient-Reported Outcomes 2019 3:55

    Content type: Research

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  14. Group concept mapping (GCM) is a research method that engages stakeholders in generating, structuring and representing ideas around a specific topic or question. GCM has been used with patients to answer quest...

    Authors: Geoffrey D. Mills, Marianna LaNoue, Alexzandra T. Gentsch, Amanda M. B. Doty, Amy Cunningham, Garrison Nord and Kristin L. Rising

    Citation: Journal of Patient-Reported Outcomes 2019 3:54

    Content type: Research

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  15. Management of cancer is often characterized by difficult decisions. The National Coalition for Cancer Survivorship (NCCS) has developed the “Know Yourself” tool, a question prompt list (QPL) to enable patients...

    Authors: Zackary Berger, Monica Tung, Pooja Yesantharao, Alice Zhou, Amanda Blackford, Thomas J. Smith and Claire Snyder

    Citation: Journal of Patient-Reported Outcomes 2019 3:53

    Content type: Short report

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  16. Translation and cross cultural adaptation of patient reported outcome measures (PROMs) involves a step referred to as harmonisation, following forward and backward translation of the measure. This article prop...

    Authors: Susan de Klerk, Christina Jerosch-Herold, Helen Buchanan and Lana van Niekerk

    Citation: Journal of Patient-Reported Outcomes 2019 3:52

    Content type: Research

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  17. This paper is part of a series comparing different psychometric approaches to evaluate patient-reported outcome (PRO) measures using the same items and dataset. We provide an overview and example application t...

    Authors: Angela M. Stover, Lori D. McLeod, Michelle M. Langer, Wen-Hung Chen and Bryce B. Reeve

    Citation: Journal of Patient-Reported Outcomes 2019 3:50

    Content type: Research

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  18. The aim of this study is to illustrate an example application of Rach Measurement Theory (RMT) in the evaluation of patient-reported outcome (PRO) measures. RMT diagnostic methods were applied to evaluate the ...

    Authors: Sophie Cleanthous, Skye Pamela Barbic, Sarah Smith and Antoine Regnault

    Citation: Journal of Patient-Reported Outcomes 2019 3:47

    Content type: Research

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  19. Psychometric theory offers a range of tests that can be used as supportive evidence of both validity and reliability of instruments aimed at measuring patient-reported outcomes (PRO). The aim of this paper is ...

    Authors: Sandra Nolte, Cheryl Coon, Stacie Hudgens and Mathilde G. E. Verdam

    Citation: Journal of Patient-Reported Outcomes 2019 3:46

    Content type: Research

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  20. Adult and adolescent vaccination rates are far below coverage targets in the United States. Our objective was to identify the most influential factors related to vaccine uptake among adults, adolescents, and p...

    Authors: Tara A. Lavelle, Mark Messonnier, Shannon Stokley, David Kim, Aparna Ramakrishnan, Achamyeleh Gebremariam, Norma-Jean E. Simon, Angela M. Rose and Lisa A. Prosser

    Citation: Journal of Patient-Reported Outcomes 2019 3:51

    Content type: Research

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  21. Physical activity is a modifiable healthy behavior that has been shown to positively influence health-related quality of life. However, research examining the link between physical activity and health-related ...

    Authors: Priscilla M. Vásquez, Ramon A. Durazo-Arvizu, David X. Marquez, Maria Argos, Melissa Lamar, Angela Odoms-Young, Donghong Wu, Hector M. González, Wassim Tarraf, Daniela Sotres-Alvarez, Denise Vidot, Rosenda Murillo, Krista M. Perreira, Sheila F. Castañeda, Yasmin Mossavar-Rahmani, Jianwen Cai…

    Citation: Journal of Patient-Reported Outcomes 2019 3:45

    Content type: Research

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  22. Capturing the impact of caring for patients with debilitating rare disease is important for understanding disease burden. We aimed to develop and validate an instrument to measure the impact on caregivers of c...

    Authors: Magdalena Harrington, Asha Hareendran, Anne Skalicky, Hilary Wilson, Marci Clark and Jaromir Mikl

    Citation: Journal of Patient-Reported Outcomes 2019 3:44

    Content type: Research

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  23. Mild Cognitive Impairment (MCI) is a transitional state between normal cognition and dementia during ageing process. Early screening of elderly for MCI can help for early prevention and treatment of dementia. ...

    Authors: Govinda Mani Nepal, Asmita Shrestha and Ranjeeta Acharya

    Citation: Journal of Patient-Reported Outcomes 2019 3:38

    Content type: Research

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  24. Atopic dermatitis (AD) is a common skin disorder characterized by chronic inflammation, altered skin barrier function, and inflammatory cell skin infiltration that decreases health-related quality of life (HRQ...

    Authors: Louise Newton, Amy M. DeLozier, Philip C. Griffiths, Jennifer N. Hill, Stacie Hudgens, Tara Symonds, Jonathon C. Gable, Jim Paik, Kathleen W. Wyrwich, Lawrence F. Eichenfield, Linda Abetz-Webb and Jonathan I. Silverberg

    Citation: Journal of Patient-Reported Outcomes 2019 3:42

    Content type: Research

    Published on:

  25. Patient performance status is routinely used in oncology to estimate physical functioning, an important factor in clinical treatment decisions and eligibility for clinical trials. However, validity and reliabi...

    Authors: Joan E. Broderick, Marcella May, Joseph E. Schwartz, Ming Li, Aaron Mejia, Luciano Nocera, Anand Kolatkar, Naoto T. Ueno, Sriram Yennu, Jerry S. H. Lee, Sean E. Hanlon, Frankie A. Cozzens Philips, Cyrus Shahabi, Peter Kuhn and Jorge Nieva

    Citation: Journal of Patient-Reported Outcomes 2019 3:41

    Content type: Research

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  26. Community reintegration is one of the most important elements of disability rehabilitation globally. Hence, there is need for availability of psychometrically-sound and culturally-specific instruments for its ...

    Authors: Emmanuel Chiebuka Okoye, Stella Onyinye Oyedum, Christopher Olusanjo Akosile, Ifeoma Uchenna Onwuakagba, Peter Olanrewaju Ibikunle, Uchenna Prosper Okonkwo and Ifeoma Adaigwe Okeke

    Citation: Journal of Patient-Reported Outcomes 2019 3:40

    Content type: Research

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  27. A concept elicitation, cognitive debriefing, and usability study was undertaken to: 1) ascertain the migraine experience with a particular focus on the impact on roles and daily functioning; 2) determine the c...

    Authors: Rebecca M. Speck, Huda Shalhoub, David W. Ayer, Janet H. Ford, Kathleen W. Wyrwich and Elizabeth N. Bush

    Citation: Journal of Patient-Reported Outcomes 2019 3:39

    Content type: Research

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  28. Novel, pragmatic, patient-centered strategies are needed to ensure fit-for-purpose patient-reported outcomes (PRO) instruments in clinical trial research for rare diseases such as myelodysplastic syndromes (MD...

    Authors: Jill A. Bell, Aaron Galaznik, Farrah Pompilus, Sara Strzok, Rafael Bejar, Fatima Scipione, Robert J. Fram, Douglas V. Faller, Stefan Cano and Patrick Marquis

    Citation: Journal of Patient-Reported Outcomes 2019 3:35

    Content type: Research

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  29. Symptom assessment requires psychometrically validated questionnaires that are easy to use, relevant to the disease, and quick to administer. The MD Anderson Symptom Inventory for malignant pleural mesotheliom...

    Authors: Tito R. Mendoza, Loretta A. Williams, Karen N. Keating, Jonathan Siegel, Cem Elbi, Anna K. Nowak, Raffit Hassan, Brian Cuffel and Charles S. Cleeland

    Citation: Journal of Patient-Reported Outcomes 2019 3:34

    Content type: Research

    Published on:

  30. Parenting confidence is a key factor in predicting a range of outcomes for both parents and children, such as parental depression, parental stress, and child health development. This study examines maternal co...

    Authors: Maiken Pontoppidan, Stefan Bastholm Andrade, Ingeborg Hedegaard Kristensen and Erik Lykke Mortensen

    Citation: Journal of Patient-Reported Outcomes 2019 3:33

    Content type: Research

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  31. The response rate on patient-reported outcome measurements (PROMs) necessary to adequately evaluate a treatment and improve patient care is unknown. Hospitals generally aim for the highest possible response ra...

    Authors: Yvette Pronk, Peter Pilot, Justus M. Brinkman, Ronald J. van Heerwaarden and Walter van der Weegen

    Citation: Journal of Patient-Reported Outcomes 2019 3:31

    Content type: Research

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  32. The publisher has retracted this article [1] because the incorrect version of the article was published in error.

    Authors: David Cella, Hilary Wilson, Huda Shalhoub, Dennis A. Revicki, Joseph C. Cappelleri, Andrew G. Bushmakin, Elizabeth Kudlacz and Ming-Ann Hsu

    Citation: Journal of Patient-Reported Outcomes 2019 3:32

    Content type: Retraction Note

    Published on:

    The original article was published in Journal of Patient-Reported Outcomes 2019 3:5

  33. To evaluate the measurement properties (e.g., content validity, reliability, and ability to detect change) of the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue scale in patients with active ...

    Authors: David Cella, Hilary Wilson, Huda Shalhoub, Dennis A. Revicki, Joseph C. Cappelleri, Andrew G. Bushmakin, Elizabeth Kudlacz and Ming-Ann Hsu

    Citation: Journal of Patient-Reported Outcomes 2019 3:30

    Content type: Research

    Published on:

  34. To evaluate the psychometric properties of three new condition-specific questionnaires designed to assess outcomes amongst patients under pre-operative surveillance for a small abdominal aortic aneurysm (AAA) ...

    Authors: Jacquelyn Romaine, George Peach, Matt Thompson, Robert J. Hinchliffe and Clare Bradley

    Citation: Journal of Patient-Reported Outcomes 2019 3:29

    Content type: Research

    Published on:

  35. The lack of formal instruments to measure Burden in primary caregivers of Children in a hospital context is limited because mostly of published instruments are related to cancer survivors, ambulatory environme...

    Authors: Yorschua F. Jalil, Gregory S. Villarroel, Alejandra A. Silva, Lilian S. Briceño, Vanessa Perez Ormeño, Nicolas S. Ibáñez, Paulina A. Méndez, Cristina F. Canales and Mireya A. Méndez

    Citation: Journal of Patient-Reported Outcomes 2019 3:28

    Content type: Research

    Published on:

  36. With the increased use of targeted therapies in oncology, dermatological adverse events (dAEs) have drawn attention. Because the face is crucial for human identity and social interactions, facial dAEs have sig...

    Authors: Kaori Yagasaki, Hayato Takahashi, Takeshi Ouchi, Jun Yamagami, Yasuo Hamamoto, Masayuki Amagai and Hiroko Komatsu

    Citation: Journal of Patient-Reported Outcomes 2019 3:27

    Content type: Research

    Published on:

  37. This study aimed to develop and provide a psychometric and feasibility pilot evaluation of the Heart Failure (HF) Symptom Tracker (HFaST), a new patient-reported tool designed to facilitate communication betwe...

    Authors: Eldrin F. Lewis, Theresa M. Coles, Sandy Lewis, Lauren M. Nelson, Amy Barrett, Carla DeMuro Romano, Donald E. Stull, Stuart J. Turner and Chunlan G. Chang

    Citation: Journal of Patient-Reported Outcomes 2019 3:26

    Content type: Research

    Published on:

  38. Patient-reports of cancer treatments are sometimes used in oncology research and clinically when medical records are unavailable. We aimed to evaluate the accuracy of patient recall in this setting.

    Authors: Kelly C. Gast, Elizabeth J. Cathcart-Rake, Aaron Norman, Leah Eshraghi, Nwamaka Obidegwu, Fergus Couch, Celine Vachon and Kathryn J. Ruddy

    Citation: Journal of Patient-Reported Outcomes 2019 3:24

    Content type: Short report

    Published on:

  39. Finding the optimal treatment for a chronic condition can be a complex and lengthy endeavor for both the patient and the clinician. To address this challenge, we developed an “N-of-1” quality improvement infra...

    Authors: Rebecca N. Jerome, Jill M. Pulley, Terri L. Edwards, Alyssa B. Dickerson, Douglas Conway, Sara L. Van Driest, Gordon R. Bernard and Paul A. Harris

    Citation: Journal of Patient-Reported Outcomes 2019 3:25

    Content type: Short report

    Published on:

  40. Incidentally discovered silent brain infarcts (id-SBIs) are an understudied condition with probable clinical significance, but it is not known how patients respond to or prioritize this condition. We sought to...

    Authors: Lester Y. Leung, Paul K. J. Han, Christine Lundquist, Gene Weinstein, David E. Thaler and David M. Kent

    Citation: Journal of Patient-Reported Outcomes 2019 3:23

    Content type: Research

    Published on:

  41. The Asthma Symptom Diary was developed to assess severity of symptoms in patients with moderate to severe asthma, and has evidence supporting reliability and validity. Only limited information is available on ...

    Authors: Gary Globe, Ingela Wiklund, Maria Mattera, Hao Zhang and Dennis A. Revicki

    Citation: Journal of Patient-Reported Outcomes 2019 3:22

    Content type: Research

    Published on:

  42. Guidelines for the use of goal attainment scaling (GAS) recommend that the patient specify at least three goals. Even so, this may not always be feasible or align with patient preferences. Investigations into ...

    Authors: Lisa McGarrigle, Jonathan C. Roberts, Michael Denne and Kenneth Rockwood

    Citation: Journal of Patient-Reported Outcomes 2019 3:20

    Content type: Short report

    Published on:

  43. Patient-reported outcomes are central for the assessment and treatment of people with chronic disease. The primary aim of this study was to determine if people with arthritis differed from healthy individuals ...

    Authors: Doerte U. Junghaenel, Stefan Schneider and Arthur A. Stone

    Citation: Journal of Patient-Reported Outcomes 2019 3:21

    Content type: Short report

    Published on:

  44. Toxicity-monitoring plays an important role in all cancer treatment, however, early recognition is vital for detecting and treating immune-related symptoms. Preparing a Patient Reported Outcomes tool and inclu...

    Authors: Lærke K. Tolstrup, Lars Bastholt, Ann-Dorthe Zwisler, Karin B. Dieperink and Helle Pappot

    Citation: Journal of Patient-Reported Outcomes 2019 3:19

    Content type: Short report

    Published on:

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