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  1. SWOG S0421 was a large randomized trial comparing docetaxel/prednisone plus placebo (DPP) to docetaxel/prednisone plus atrasentan over 12 cycles for patients with metastatic castration-resistant prostate cance...

    Authors: Joseph M. Unger, Katherine Griffin, Gary W. Donaldson, Karen M. Baranowski, Margorie J. Good, Eunicia Reburiano, Maha Hussain, Paul J. Monk, Peter J. Van Veldhuizen, Michael A. Carducci, Celestia S. Higano, Primo N. Lara, Catherine M. Tangen, David I. Quinn, James L. Wade, III…
    Citation: Journal of Patient-Reported Outcomes 2018 2:27
  2. The clinical course of ulcerative colitis (UC) and the effects of treatment are assessed through patient-reported signs and symptoms (S&S), and endoscopic evidence of inflammation. The Ulcerative Colitis Patie...

    Authors: Peter D. R. Higgins, Gale Harding, Dennis A. Revicki, Gary Globe, Donald L. Patrick, Kristina Fitzgerald, Hema Viswanathan, Sarah M. Donelson, Brian G. Ortmeier, Wen Hung Chen, Nancy K. Leidy and Kendra DeBusk
    Citation: Journal of Patient-Reported Outcomes 2018 2:26
  3. Home enteral nutrition (HEN) is a therapeutic method used in patients who are unable to ingest the required amounts of nutrients but retain a functional gastrointestinal tract. The objective of this study was ...

    Authors: Antonio Apezetxea, Lourdes Carrillo, Felipe Casanueva, Cristina de la Cuerda, Federico Cuesta, Jose Antonio Irles, Maria Nuria Virgili, Miquel Layola and Luis Lizán
    Citation: Journal of Patient-Reported Outcomes 2018 2:25
  4. The clinical course of Crohn’s disease (CD) and the effect of its treatment are monitored through patient-reported signs and symptoms (S&S), and endoscopic evidence of inflammation. The Crohn’s Disease Patient...

    Authors: Peter D. R. Higgins, Gale Harding, Nancy K. Leidy, Kendra DeBusk, Donald L. Patrick, Hema N. Viswanathan, Kristina Fitzgerald, Sarah M. Donelson, Marcoli Cyrille, Brian G. Ortmeier, Hilary Wilson, Dennis A. Revicki and Gary Globe
    Citation: Journal of Patient-Reported Outcomes 2018 2:24
  5. Reforms in the Dutch healthcare system in combination with the aging of the population will lead to a strong increase in the demand for informal care in the Netherlands. A hip fracture is one of the most impor...

    Authors: Cornelis L. P. van de Ree, Kari Ploegsma, Tim A. Kanters, Jan A. Roukema, Mariska A. C. De Jongh and Taco Gosens
    Citation: Journal of Patient-Reported Outcomes 2018 2:23
  6. To compare health-related quality of life (HRQoL) in colorectal cancer (CRC) survivors with sporadic CRC to those with hereditary cancer, specifically Lynch syndrome (LS).

    Authors: Allison M. Burton-Chase, Wendy M. Parker, Kirsten M. Donato, Shannon McCormick, Ellen R. Gritz, Christopher I. Amos, Karen H. Lu, Patrick M. Lynch, Miguel A. Rodriguez-Bigas, Y. Nancy You and Susan K. Peterson
    Citation: Journal of Patient-Reported Outcomes 2018 2:21
  7. Ulcerative colitis (UC) is associated with lower health-related quality of life (HRQoL), and with disease activity predicting lower HRQoL and worse work-related outcomes. The current study examined the burden ...

    Authors: Mary Kaye Willian, Geert D’Haens, Aaron Yarlas and Ashish V. Joshi
    Citation: Journal of Patient-Reported Outcomes 2018 2:22
  8. Consideration of health-related quality of life (HRQOL) in diabetes has been associated with long-term and short-term complications such as hypoglycaemia, but not with short-term glucose control. This study ai...

    Authors: J. Jendle, A. Sandberg, S. Buchs, P. Swinburn, M. Hadi and L. Å. Levin
    Citation: Journal of Patient-Reported Outcomes 2018 2:20
  9. Asthma-chronic obstructive pulmonary disease overlap (ACO) differs from asthma and chronic obstructive pulmonary disease (COPD) in demographics, phenotypic characteristics and outcomes, yet the patient experie...

    Authors: Linda Nelsen, Adam Gater, Charlotte Panter, Chloe Tolley, Laurie Lee and Steven Pascoe
    Citation: Journal of Patient-Reported Outcomes 2018 2:18
  10. Overweight and obesity have been associated with physical and emotional signs & symptoms. Research has shown that modest weight loss can mitigate some symptoms in individuals with overweight or obesity. This s...

    Authors: Meryl Brod, Lise Højbjerre, Kathryn M. Pfeiffer, Robyn Sayner, Henrik H. Meincke and Donald L. Patrick
    Citation: Journal of Patient-Reported Outcomes 2018 2:17
  11. The Brief Pain Inventory-short form (BPI-sf) is widely used in self-reported pain assessment, incorporates pain numeric rating scales (NRS) and is commonly utilized in electronic format in clinical trials, how...

    Authors: Heather L. Gelhorn, Sonya Eremenco, Anne M. Skalicky, Zaneta Balantac, Tricia Cimms, Katarina Halling and Chris Sexton
    Citation: Journal of Patient-Reported Outcomes 2018 2:16
  12. Metachromatic leukodystrophy (MLD) is a rare disease with three forms based on the age at onset of signs and symptoms. The objective of this study was to develop a caregiver-reported clinical outcome assessmen...

    Authors: T. Michelle Brown, Susan Martin, Sheri E. Fehnel and Linda S. Deal
    Citation: Journal of Patient-Reported Outcomes 2018 2:15
  13. Psychological alienation is an important concept in the study of adolescents’ health and behavior but no gold standard for measuring alienation among adolescents exists. There is a need for new scales with hig...

    Authors: Signe Boe Rayce, Svend Kreiner, Mogens Trab Damsgaard, Tine Nielsen and Bjørn Evald Holstein
    Citation: Journal of Patient-Reported Outcomes 2018 2:14
  14. Aplastic anemia is a rare, serious blood disorder due to bone marrow failure to produce blood cells. Transfusions are used to reduce risk of bleeding, infection and relieve anemia symptoms. In severe patients,...

    Authors: A. Simon Pickard, Lynn Huynh, Jasmina I. Ivanova, Todor Totev, Sophia Graham, Axel C. Mühlbacher, Anuja Roy and Mei Sheng Duh
    Citation: Journal of Patient-Reported Outcomes 2018 2:13
  15. Parents’ perceptions of their 8–17-year-old children’s oral health status were assessed using a sample from diverse dental clinics in Greater Los Angeles County to identify constructs for a survey instrument.

    Authors: Carl A. Maida, Marvin Marcus, Ron D. Hays, Ian D. Coulter, Francisco Ramos-Gomez, Steve Y. Lee, Patricia S. McClory, Laura V. Van, Yan Wang, Jie Shen, Bryant Lau, Vladimir W. Spolsky, James J. Crall and Honghu Liu
    Citation: Journal of Patient-Reported Outcomes 2018 2:7
  16. This paper describes the rationale and goals of the Patient-Reported Outcome (PRO) Consortium’s instrument translation process. The PRO Consortium has developed a number of novel PRO measures which are in the ...

    Authors: Sonya Eremenco, Sheryl Pease, Sarah Mann and Pamela Berry
    Citation: Journal of Patient-Reported Outcomes 2018 2:12
  17. Comprehensive assessment of systemic lupus erythematosus (SLE) and its treatment requires patient-reported outcome (PRO) measures to capture impacts and fluctuating symptoms. The objective of this study was to...

    Authors: S. D. Mathias, P. Berry, J. De Vries, K. Pascoe, H. H. Colwell, D. J. Chang and A. D. Askanase
    Citation: Journal of Patient-Reported Outcomes 2018 2:11
  18. There are no clinical outcome assessment (COA) tools developed in accordance with Food and Drug Administration (FDA) guidance suitable for the evaluation of symptoms associated with respiratory syncytial virus...

    Authors: Valerie Williams, Carla DeMuro, Sandy Lewis, Nicole Williams, Todd Wolynn, Paul Wisman, Stan L. Block, Shelly Senders, Seth Toback and Jason W. Chien
    Citation: Journal of Patient-Reported Outcomes 2018 2:10
  19. Respiratory syncytial virus (RSV) is a seasonal infection affecting most children by 2 years of age and the leading cause of lower respiratory tract infection requiring hospitalization in infants. Novel antivi...

    Authors: Sandy Lewis, Carla DeMuro, Stan L. Block, Shelly Senders, Paul Wisman, Seth Toback, Jason W. Chien and Valerie Williams
    Citation: Journal of Patient-Reported Outcomes 2018 2:9
  20. This paper presents emerging Good Practices for Translatability Assessment (TA) of Patient-Reported Outcome (PRO) Measures. The ISOQOL Translation and Cultural Adaptation Special Interest Group (TCA-SIG) under...

    Authors: Catherine Acquadro, Donald L. Patrick, Sonya Eremenco, Mona L. Martin, Dagmara Kuliś, Helena Correia and Katrin Conway
    Citation: Journal of Patient-Reported Outcomes 2018 2:8
  21. We developed the Nausea/Vomiting Symptom Assessment (NVSA©) patient-reported outcome (PRO) instrument to capture patients’ experience with nausea and vomiting while on calcimimetic therapy to treat secondary hype...

    Authors: Colleen A. McHorney, Mark E. Bensink, Laurie B. Burke, Vasily Belozeroff and Chad Gwaltney
    Citation: Journal of Patient-Reported Outcomes 2018 2:6
  22. The purpose of the study was to design a measure of patient satisfaction with treatment for macular disease, the MacTSQ, and to carry out psychometric evaluation of the measure. The measure was designed along ...

    Authors: Jan Mitchell and Clare Bradley
    Citation: Journal of Patient-Reported Outcomes 2018 2:5
  23. The Short Form 36-Item Survey is one of the most commonly used instruments for assessing health-related quality of life. Two identical versions of the original instrument are currently available: the public do...

    Authors: Lotti Orwelius, Mats Nilsson, Evalill Nilsson, Marika Wenemark, Ulla Walfridsson, Mats Lundström, Charles Taft, Bo Palaszewski and Margareta Kristenson
    Citation: Journal of Patient-Reported Outcomes 2018 2:4
  24. Health literacy is a key asset, defined as the capacity to acquire, understand and use information in ways which promote and maintain good health.

    Authors: Youssoufa M. Ousseine, Alexandra Rouquette, Anne-Déborah Bouhnik, Laurent Rigal, Virginie Ringa, Allan ‘Ben’ Smith and Julien Mancini
    Citation: Journal of Patient-Reported Outcomes 2018 2:3
  25. The Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) was developed by the National Cancer Institute as an adverse event assessment system to evaluate patients...

    Authors: Takashi Kawaguchi, Kanako Azuma, Motohiko Sano, Soan Kim, Yosuke Kawahara, Yoko Sano, Tomohide Shimodaira, Keiichiro Ishibashi, Tempei Miyaji, Ethan Basch and Takuhiro Yamaguchi
    Citation: Journal of Patient-Reported Outcomes 2018 2:2
  26. Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of tr...

    Authors: Elissa R. Weitzman, Lauren E. Wisk, Parissa K. Salimian, Kara M. Magane, Fatma Dedeoglu, Aimee O. Hersh, Yukiko Kimura, Kenneth D. Mandl, Sarah Ringold and Marc Natter
    Citation: Journal of Patient-Reported Outcomes 2018 2:1
  27. Health-related quality of life instruments, both general and more disease specific, would ideally be included in the evaluation of outcome in paediatric orthopaedics. The aim of this study was to translate and...

    Authors: Bengt Herngren, Margaretha Stenmarker and Karin Enskär
    Citation: Journal of Patient-Reported Outcomes 2017 1:16
  28. The Food and Drug Administration patient-reported outcome (PRO) guidance provides standards for PRO development, but these standards bring scientific and logistical challenges which can result in a lengthy and...

    Authors: Louise Humphrey, Thomas Willgoss, Andrew Trigg, Stephanie Meysner, Mary Kane, Sally Dickinson and Helen Kitchen
    Citation: Journal of Patient-Reported Outcomes 2017 1:9
  29. Obstructive sleep apnea (OSA) is a chronic condition that can have a wide range of consequences for a patient’s health-related quality of life. Monitoring aspects of quality of life in clinical practice has th...

    Authors: Inger L. Abma, Maroeska Rovers, Marijke IJff, Bernard Hol, Gert P. Westert and Philip J. van der Wees
    Citation: Journal of Patient-Reported Outcomes 2017 1:14
  30. This study examined the content validity of the SF-36v2® Health Survey (SF-36v2) in patients with AL amyloidosis using qualitative interviews with physicians and patients. The study included three distinct pha...

    Authors: Michelle K. White, Martha S. Bayliss, Spencer D. Guthrie, Kimberly P. Raymond, Avery A. Rizio and Kristen L. McCausland
    Citation: Journal of Patient-Reported Outcomes 2017 1:13
  31. The US National Cancer Institute (NCI) has developed the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) to capture patients’ self-reported symptomatic adver...

    Authors: Tempei Miyaji, Yukiko Iioka, Yujiro Kuroda, Daigo Yamamoto, Satoru Iwase, Yasushi Goto, Masahiro Tsuboi, Hiroki Odagiri, Yu Tsubota, Takashi Kawaguchi, Naoko Sakata, Ethan Basch and Takuhiro Yamaguchi
    Citation: Journal of Patient-Reported Outcomes 2017 1:8
  32. This study evaluated the responsiveness of several PROMIS patient-reported outcome measures in patients with hand and upper extremity disorders and provided comparisons with the qDASH instrument.

    Authors: Man Hung, Charles L. Saltzman, Tom Greene, Maren W. Voss, Jerry Bounsanga, Yushan Gu, Angela A. Wang, Douglas Hutchinson and Andrew R. Tyser
    Citation: Journal of Patient-Reported Outcomes 2017 1:12
  33. Pediatric neuromuscular illnesses often result in decreased health-related quality of life (HRQL), notably in physical functioning. Generic HRQL measures have been developed for use in general populations, but...

    Authors: Angie Mae Rodday, Robert J. Graham, Ruth Ann Weidner, Nan E. Rothrock, Darren A. Dewalt and Susan K. Parsons
    Citation: Journal of Patient-Reported Outcomes 2017 1:10
  34. This study aimed to evaluate the patient-reported outcome (PRO) content of ovarian cancer randomised-controlled trial (RCT) publications, describe PRO compliance, and explore potential relationships among thes...

    Authors: Rebecca Mercieca-Bebber, Michael Friedlander, Melanie Calvert, Martin Stockler, Derek Kyte, Peey-Sei Kok and Madeleine T. King
    Citation: Journal of Patient-Reported Outcomes 2017 1:5
  35. The lack of an appropriate retina-specific patient-reported outcome instrument restricts the understanding of the full impact of hereditary retinal diseases and other less common but potentially blinding acqui...

    Authors: Mallika Prem Senthil, Jyoti Khadka, Jagjit Singh Gilhotra, Sumu Simon and Konrad Pesudovs
    Citation: Journal of Patient-Reported Outcomes 2017 1:15
  36. The primary objective of this study was to evaluate the content validity of the Psoriasis Symptom Scale (PSS), with a specific focus on understanding of the content of the PRO measure by conducting one-on-one ...

    Authors: A. M. Rentz, A. M. Skalicky, K. Burslem, K. Becker, D. Kaschinski, D. Esser and D. A. Revicki
    Citation: Journal of Patient-Reported Outcomes 2017 1:4
  37. Eosinophilic esophagitis (EoE) is characterized by high levels of eosinophils in the esophageal mucosa. Patients with the disease present with a range of symptoms, including dysphagia (difficulty swallowing). ...

    Authors: Stacie Hudgens, Christopher Evans, Elaine Phillips and Malcolm Hill
    Citation: Journal of Patient-Reported Outcomes 2017 1:3
  38. Self-reports of health provide useful information about function and well-being that can improve communication between patients and clinicians. Global health items provide summary information that are predicti...

    Authors: Ron D. Hays, Benjamin D. Schalet, Karen L. Spritzer and David Cella
    Citation: Journal of Patient-Reported Outcomes 2017 1:2
  39. The aim was to examine the feasibility, acceptability and clinical utility of electronic symptom surveillance with clinician feedback using a subset of items drawn from the Patient-Reported Outcomes version of...

    Authors: Christina Baeksted, Helle Pappot, Aase Nissen, Niels Henrik Hjollund, Sandra A. Mitchell, Ethan Basch, Pernille Envold Bidstrup, Susanne Oksbjerg Dalton and Christoffer Johansen
    Citation: Journal of Patient-Reported Outcomes 2017 1:1

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