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  1. The Stroke Specific Quality of Life 2.0 (SS-QoL 2.0) is a widely used scale that has been cross-culturally adapted to many languages including Yoruba, one of the three major Nigerian languages. Non-availabilit...

    Authors: Marufat O. Odetunde, Aderonke O. Akinpelu and Adesola C. Odole
    Citation: Journal of Patient-Reported Outcomes 2018 2:63
  2. Patients with ulcerative colitis, a type of inflammatory bowel disease, report negative impacts of disease symptoms on work-related outcomes, including absenteeism and presenteeism. As a way to better understa...

    Authors: Aaron Yarlas, Stephen M. Maher, Martha S. Bayliss, Andrew Lovley, Joseph C. Cappelleri and Marco D. DiBonaventura
    Citation: Journal of Patient-Reported Outcomes 2018 2:62
  3. The American Neurogastroenterology and Motility Society Gastroparesis Cardinal Symptom Index-Daily Diary (ANMS GCSI-DD) was developed to meet Food and Drug Administration (FDA) recommendations for patient-repo...

    Authors: Dennis A. Revicki, Sara Lavoie, Rebecca M. Speck, Jorge Puelles, Braden Kuo, Michael Camilleri, Cristina Almansa and Henry P. Parkman
    Citation: Journal of Patient-Reported Outcomes 2018 2:61
  4. Some survivors of acute lymphoblastic leukemia (ALL) in childhood and adolescence exhibit short stature, especially if their treatment included cranial irradiation. The impact of this outcome on health-related...

    Authors: Laura Collins, Uma Athale, Amy Cranston and Ronald Barr
    Citation: Journal of Patient-Reported Outcomes 2018 2:59
  5. Traditional concordance metrics have shortcomings based on dataset characteristics (e.g., multiple attributes rated, missing data); therefore it is necessary to explore supplemental approaches to quantifying a...

    Authors: Thomas M. Atkinson, Bryce B. Reeve, Amylou C. Dueck, Antonia V. Bennett, Tito R. Mendoza, Lauren J. Rogak, Ethan Basch and Yuelin Li
    Citation: Journal of Patient-Reported Outcomes 2018 2:56
  6. To create a Dutch translated short version of the Breast Cancer Treatment Outcome Scale (BCTOS) and validate it in patients who have completed both breast conserving surgery and adjuvant radiotherapy.

    Authors: Gerson M. Struik, Frank W. de Jongh, Erwin Birnie, Jean-Philippe Pignol and Taco M. Klem
    Citation: Journal of Patient-Reported Outcomes 2018 2:60
  7. Depressive symptoms in patients with intracerebral hemorrhage (ICH) are common and are associated with worse outcomes. It is not well described how often depressive symptoms are ascertained and treated in larg...

    Authors: Brandon A. Francis, Jennifer Beaumont, Matthew B. Maas, Eric M. Liotta, David Cella, Shyam Prabhakaran, Jane Holl, Abel Kho and Andrew M. Naidech
    Citation: Journal of Patient-Reported Outcomes 2018 2:55
  8. Outcome of emergency admissions is usually limited to mortality with little attempt to capture the views of health status of survivors. This is because of the challenge of determining patient reported outcome ...

    Authors: Esther Kwong and Nick Black
    Citation: Journal of Patient-Reported Outcomes 2018 2:54
  9. This is a qualitative study that aims to investigate the effect of depressive status on responses to items on the WHO quality of life assessment instrument (WHOQOL-Bref), comparing which aspects of the individ...

    Authors: Jacques J. Zimmermann, Maria Lucia Tiellet Nunes and Marcelo P. Fleck
    Citation: Journal of Patient-Reported Outcomes 2018 2:52
  10. The purpose of this study was to establish the clinical thresholds for five domains (dysphagia, reflux, dumping-hypoglycemia, dumping-GI symptoms, pain) to support the use of the CONDUIT questionnaire as a scr...

    Authors: Minji K. Lee, Kathleen J. Yost, Karlyn E. Pierson, Amy J. Schrandt, Bobbie J. Skaare and Shanda H. Blackmon
    Citation: Journal of Patient-Reported Outcomes 2018 2:51
  11. A patient-centered approach to research development is important to the creation of research evidence that is meaningful and beneficial to patients. Collaboration between patients, stakeholders, and researcher...

    Authors: Ashley S. Crumby, Erin R. Holmes and Meagen Rosenthal
    Citation: Journal of Patient-Reported Outcomes 2018 2:47
  12. Complex posttraumatic stress disorder is described as a chronic condition with several severe and concurrent symptoms. Symptoms influence and impair not only the affected individuals but also their social surr...

    Authors: Manuel P. Stadtmann, Andreas Maercker, Jochen Binder and Wilfried Schnepp
    Citation: Journal of Patient-Reported Outcomes 2018 2:50
  13. Malignant disorders in childhood are life-threatening conditions, and issues regarding the children’s health-related quality of life (HRQOL) are crucial in paediatric oncology. The overall aim of this study wa...

    Authors: Emelie Stenmarker, Karin Mellgren, Mónica Matus, Anna Schroder Hakansson and Margaretha Stenmarker
    Citation: Journal of Patient-Reported Outcomes 2018 2:49
  14. We estimated clinically important, group-level differences in self-reported cognitive function for the Functional Assessment of Cancer Therapy-Cognitive Function (FACT-Cog) instrument. We also investigated ind...

    Authors: M L Bell, H M Dhillon, V J Bray and J L Vardy
    Citation: Journal of Patient-Reported Outcomes 2018 2:48
  15. There is increasing interest in using Patient Reported Outcome Measures (PROMs) within organisations delivering health related services. However, organisations have had mixed success in implementing PROMs and ...

    Authors: Alexis Foster, Liz Croot, John Brazier, Janet Harris and Alicia O’Cathain
    Citation: Journal of Patient-Reported Outcomes 2018 2:46
  16. The main purposes in this cross-sectional study were to study the impact of pregnancy and pelvic girdle pain (PGP) on health related quality of life (HRQoL), by comparing the scores on different domains of two...

    Authors: Pernille Stendal Robinson, Arun Prasad Balasundaram, Nina Køpke Vøllestad and Hilde Stendal Robinson
    Citation: Journal of Patient-Reported Outcomes 2018 2:45
  17. Previous research has examined patient perceptions of insulin injection devices. However, a range of injectable medications other than insulin are now used to treat type 2 diabetes. No patient-reported outcome...

    Authors: Louis S. Matza, Katie D. Stewart, Rosirene Paczkowski, Karin S. Coyne, Brooke Currie and Kristina S. Boye
    Citation: Journal of Patient-Reported Outcomes 2018 2:44
  18. In this paper, we report the findings of a realist synthesis that aimed to understand how and in what circumstances patient reported outcome measures (PROMs) support patient-clinician communication and subsequ...

    Authors: Joanne Greenhalgh, Kate Gooding, Elizabeth Gibbons, Sonia Dalkin, Judy Wright, Jose Valderas and Nick Black
    Citation: Journal of Patient-Reported Outcomes 2018 2:42
  19. Previous research has examined patient perceptions of insulin injection devices. However, injectable medications other than insulin are increasingly used to treat type 2 diabetes, including GLP-1 receptor agon...

    Authors: Louis S. Matza, Kristina S. Boye, Katie D. Stewart, Rosirene Paczkowski, Jessica Jordan and Lindsey T. Murray
    Citation: Journal of Patient-Reported Outcomes 2018 2:43
  20. In the development of patient-reported outcome (PRO) instruments, little documentation is provided on the justification of response scale selection. The selection of response scales is often based on the devel...

    Authors: Katharine Gries, Pamela Berry, Magdalena Harrington, Mabel Crescioni, Mira Patel, Katja Rudell, Shima Safikhani, Sheryl Pease and Margaret Vernon
    Citation: Journal of Patient-Reported Outcomes 2018 2:41
  21. The purpose of this literature review was to examine the existing patient-reported outcome measurement literature to understand the empirical evidence supporting response scale selection in pain measurement fo...

    Authors: Shima Safikhani, Katharine S. Gries, Jeremiah J. Trudeau, David Reasner, Katja Rüdell, Stephen Joel Coons, Elizabeth Nicole Bush, Jennifer Hanlon, Lucy Abraham and Margaret Vernon
    Citation: Journal of Patient-Reported Outcomes 2018 2:40
  22. Despite the importance of response option selection for patient-reported outcome measures, there seems to be little empirical evidence for the selected scale type. This article provides an overview of the publ...

    Authors: April N. Naegeli, Jennifer Hanlon, Katharine S. Gries, Shima Safikhani, Anna Ryden, Mira Patel, Mabel Crescioni and Margaret Vernon
    Citation: Journal of Patient-Reported Outcomes 2018 2:39
  23. There is an increasing focus on the use of patient-reported outcome (PRO) measures to improve the quality and effectiveness of health care. PRO-based follow-up is a new model of service delivery, where the pat...

    Authors: Caroline Trillingsgaard Mejdahl, Liv Marit Valen Schougaard, Niels Henrik Hjollund, Erik Riiskjær, Sally Thorne and Kirsten Lomborg
    Citation: Journal of Patient-Reported Outcomes 2018 2:38
  24. In interview studies, men under surveillance for screening-detected abdominal aortic aneurysms have reported ambivalence towards this diagnosis: the knowledge was welcomed together with worries, feelings of an...

    Authors: John Brodersen, Anders Hansson, Minna Johansson, Volkert Siersma, Marcus Langenskiöld and Monica Pettersson
    Citation: Journal of Patient-Reported Outcomes 2018 2:37
  25. Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians t...

    Authors: Richard Sawatzky, Esther Laforest, Kara Schick-Makaroff, Kelli Stajduhar, Sheryl Reimer-Kirkham, Marian Krawczyk, Joakim Öhlén, Barbara McLeod, Neil Hilliard, Carolyn Tayler and S. Robin Cohen
    Citation: Journal of Patient-Reported Outcomes 2018 2:36
  26. Incorporating patient reporting of symptomatic adverse events (AEs) is important in evaluating safety and tolerability in cancer clinical trials. The Patient-Reported Outcomes version of the Common Terminology...

    Authors: Rebecca M. Speck, William R. Lenderking and James W. Shaw
    Citation: Journal of Patient-Reported Outcomes 2018 2:35
  27. Patient-reported outcomes (PROs) have traditionally been implemented through a manual process of paper and pencil with little standardization throughout a Healthcare System. Each practice has asked patients sp...

    Authors: Joshua Biber, Dominik Ose, Jenny Reese, Anna Gardiner, Julio Facelli, Joshua Spuhl, Darrel Brodke, Vivian S. Lee, Rachel Hess and Howard Weeks
    Citation: Journal of Patient-Reported Outcomes 2018 2:34
  28. Head and neck squamous cell carcinoma (HNSCC) and its associated treatments may affect all aspects of patients’ health-related quality of life (HRQoL). Although the EORTC QLQ-H&N35 is regularly administered to...

    Authors: Arnold Degboe, Sarah L. Knight, Katarina Halling, Andrew Trigg, Tamara Al-Zubeidi, Natalie Aldhouse, Helen Kitchen, Lori Wirth and Simon N. Rogers
    Citation: Journal of Patient-Reported Outcomes 2018 2:33
  29. There is growing international momentum for standardising patient outcome assessment and using patient-reported outcome measures (PROMs) to capture outcomes that matter to patients. The International Consortiu...

    Authors: Ilana N. Ackerman, Bernarda Cavka, Jacob Lippa and Andrew Bucknill
    Citation: Journal of Patient-Reported Outcomes 2018 2:32
  30. Tuberous sclerosis complex (TSC) is a rare genetic disorder characterized by benign tumors in multiple organs, including non-cancerous kidney lesions known as renal angiomyolipomas. This study’s objective is t...

    Authors: Anne M. Rentz, Anne M. Skalicky, Zhimei Liu, David W. Dunn, Michael D. Frost, Jo Anne Nakagawa, Judith Prestifilippo, Qayyim Said and James W. Wheless
    Citation: Journal of Patient-Reported Outcomes 2018 2:30
  31. Studies have demonstrated that comorbidities compound the adverse influence of cancer on health-related quality of life (HRQoL). Comorbidities adversely impact adherence to cancer treatment. Additionally, adhe...

    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 2018 2:29

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:25

  32. Nonalcoholic steatohepatitis (NASH) is a form of chronic liver disease (CLD): patients have an increased risk of developing cirrhosis, liver failure, and complications (e.g. hepatocellular carcinoma). NASH has...

    Authors: Tessa Kennedy-Martin, Jay P. Bae, Rosirene Paczkowski and Emily Freeman
    Citation: Journal of Patient-Reported Outcomes 2018 2:28
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
  44. 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
  45. 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

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