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  1. 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:

  2. 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:

  3. 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

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  4. 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:

  5. 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

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  6. 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

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  7. 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

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  8. 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

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  9. 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

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  10. The achievement of age-specific developmental milestones in youth is of great importance to the adjustment in adult life. Young adults who were born preterm, might go through a different developmental trajecto...

    Authors: Sylvia M. van der Pal, Heleen Maurice-Stam, Martha A. Grootenhuis, Aleid G. van Wassenaer-Leemhuis and Gijsbert H. W. Verrips

    Citation: Journal of Patient-Reported Outcomes 2019 3:17

    Content type: Research

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  11. Establishing meaningful change thresholds for Clinical Outcome Assessments (COA) is critical for score interpretation. While anchor- and distribution-based statistical methods are well-established, qualitative...

    Authors: Hannah Staunton, Tom Willgoss, Linda Nelsen, Claire Burbridge, Kate Sully, Diana Rofail and Rob Arbuckle

    Citation: Journal of Patient-Reported Outcomes 2019 3:16

    Content type: Commentary

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  12. Common variable immunodeficiency (CVID) and other primary antibody deficiencies (PAD) are a heterogeneous group of > 300 congenital disorders affecting the immune system. Until recently, efforts to measure hea...

    Authors: Jintana B. Andersen, Knut Midttun and Kristin J. B. Feragen

    Citation: Journal of Patient-Reported Outcomes 2019 3:15

    Content type: Research

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  13. Fatigue is prevalent and impactful in rheumatoid arthritis (RA). There is no standardized measure for its assessment nor data concerning the performance of PROMIS-Fatigue short forms (SFs) in people with RA. W...

    Authors: Clifton O. Bingham III, Anna Kristina Gutierrez, Alessandra Butanis, Vivian P. Bykerk, Jeffrey R. Curtis, Amye Leong, Anne Lyddiatt, W. Benjamin Nowell, Ana Maria Orbai and Susan J. Bartlett

    Citation: Journal of Patient-Reported Outcomes 2019 3:14

    Content type: Research

    Published on:

  14. Following publication of the original article [1], the authors reported three of their given name have been erroneously tagged as their family names. The correct names are: give name Caroline family name Marti...

    Authors: Eva-Maria Gamper, Caroline Martini, Morten Aagaard Petersen, Irene Virgolini, Bernhard Holzner and Johannes M. Giesinger

    Citation: Journal of Patient-Reported Outcomes 2019 3:13

    Content type: Correction

    Published on:

    The original article was published in Journal of Patient-Reported Outcomes 2019 3:7

  15. Health inequality is on the rise due to various social and individual factors. While preventive health checks (PHC) aim to counteract health inequality, there is robust evidence against the use of PHC in gener...

    Authors: Jonathan David Comins, Kirsten Schierup Freund, Karl Bang Christensen, Jørgen Lous and John Brodersen

    Citation: Journal of Patient-Reported Outcomes 2019 3:12

    Content type: Research

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  16. Siblings of children and adolescents with a chronic condition are at risk for developing psychosocial problems. It is important, that they receive appropriate support according to their needs. A sibling-specif...

    Authors: M. M. H. Joosten, H. Maurice-Stam, L. Scholten and M. A. Grootenhuis

    Citation: Journal of Patient-Reported Outcomes 2019 3:11

    Content type: Research

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  17. Patients with breast cancer experience a variety of disease symptoms and treatment-related side effects that can adversely affect functioning. The breast cancer experience may differ across disease stages and ...

    Authors: Nina Galipeau, Brittany Klooster, Meaghan Krohe, Derek H. Tang, Dennis A. Revicki and David Cella

    Citation: Journal of Patient-Reported Outcomes 2019 3:10

    Content type: Research

    Published on:

  18. Group brainstorming is a technique for the elicitation of patient input that has many potential uses, however no data demonstrate concept saturation. In this study we explore concept saturation in group brains...

    Authors: Marianna LaNoue, Alexzandra Gentsch, Amy Cunningham, Geoffrey Mills, Amanda M. B. Doty, Judd E. Hollander, Brendan G. Carr, Larry Loebell, Gail Weingarten and Kristin L. Rising

    Citation: Journal of Patient-Reported Outcomes 2019 3:9

    Content type: Short report

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  19. Tenosynovial giant cell tumor (TGCT), a rare, locally aggressive neoplasm of the synovium of joints and tendon sheaths, is associated with joint destruction, pain and swelling. Impacts on physical function (PF...

    Authors: Heather L. Gelhorn, Xin Ye, Rebecca M. Speck, Sandra Tong, John H. Healey, Susan V. Bukata, Richard D. Lackman, Lindsey Murray, Grant Maclaine, William R. Lenderking, Henry H. Hsu, Paul S. Lin and William D. Tap

    Citation: Journal of Patient-Reported Outcomes 2019 3:6

    Content type: Research

    Published on:

  20. Kidney transplant recipients face a lifelong regimen of medications, health monitoring and medical appointments. This work involved in managing one’s health and its impact on well-being are referred to as trea...

    Authors: Elizabeth C. Lorenz, Jason S. Egginton, Mark D. Stegall, Andrea L. Cheville, Raymond L. Heilman, Sumi Sukumaran Nair, Martin L. Mai and David T. Eton

    Citation: Journal of Patient-Reported Outcomes 2019 3:8

    Content type: Research

    Published on:

  21. Computer-adaptive tests (CAT) use individualised sets of questions to assess patient-reported health states, whereas static (conventional) questionnaires present the same questions to all patients. CAT has bee...

    Authors: Eva-Maria Gamper, Caroline Martini, Morten Aagaard Petersen, Irene Virgolini, Bernhard Holzner and Johannes M. Giesinger

    Citation: Journal of Patient-Reported Outcomes 2019 3:7

    Content type: Research

    Published on:

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2019 3:13

  22. 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 ps...

    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 3:5

    Content type: Research

    Published on:

    The Retraction Note to this article has been published in Journal of Patient-Reported Outcomes 2019 3:32

  23. Measurement of health utilities is required for economic evaluations. Few studies have evaluated health utilities for rare conditions; even fewer have incorporated disutility that may be experienced by caregiv...

    Authors: Norma-Jean Simon, John Richardson, Ayesha Ahmad, Angela Rose, Eve Wittenberg, Brittany D’Cruz and Lisa A. Prosser

    Citation: Journal of Patient-Reported Outcomes 2019 3:4

    Content type: Research

    Published on:

  24. Women value receiving quality interpersonal care during abortion services, yet no measure exists to assess this outcome from patients’ perspectives. We sought to adapt the Interpersonal Quality in Family Plann...

    Authors: Kyla Z. Donnelly, Christine Dehlendorf, Reiley Reed, Daniela Agusti and Rachel Thompson

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

    Content type: Research

    Published on:

  25. To conduct qualitative interviews to evaluate and refine the Itch Diary (ID) and weekly version of the PBC-40 in patients with itching associated with primary biliary cholangitis (PBC).

    Authors: Mona L. Martin, Larissa Stassek, Steven I. Blum, Ashish V. Joshi and David Jones

    Citation: Journal of Patient-Reported Outcomes 2019 3:2

    Content type: Research

    Published on:

  26. To test the psychometric properties of the Dutch 45-item Supportive Care Needs Survey—Partners and Caregivers (SCNS-P&C45-D) among partners of women with breast cancer living in the Netherlands.

    Authors: Mark J. A. Rietveld, Esmee J. Peters, Olga Husson, Floortje K. Ploos van Amstel, Y. Kamm, Sieta Sijtsema, Marieke Diepenbroek, Josca Heier, Celine Zoetbrood, Marijke Zielstra, Sylvie D. Lambert, Judith B. Prins and Petronella B. Ottevanger

    Citation: Journal of Patient-Reported Outcomes 2019 3:1

    Content type: Research

    Published on:

  27. To explore the existing evidence of the real-world implementation of patient-reported outcomes (PROs) in oncology clinical practice and address two aims: (1) summarize available evidence of PRO use in clinical...

    Authors: Milena Anatchkova, Sarah M. Donelson, Anne M. Skalicky, Colleen A. McHorney, Dayo Jagun and Jennifer Whiteley

    Citation: Journal of Patient-Reported Outcomes 2018 2:64

    Content type: Review

    Published on:

  28. 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

    Content type: Research

    Published on:

  29. 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

    Content type: Review

    Published on:

  30. 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

    Content type: Research

    Published on:

  31. 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

    Content type: Short report

    Published on:

  32. 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

    Content type: Research

    Published on:

  33. 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

    Content type: Research

    Published on:

  34. 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

    Content type: Research

    Published on:

  35. 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

    Content type: Research

    Published on:

  36. 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

    Content type: Research

    Published on:

  37. 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

    Content type: Research

    Published on:

  38. 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

    Content type: Research

    Published on:

  39. 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

    Content type: Research

    Published on:

  40. 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

    Content type: Research

    Published on:

  41. 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

    Content type: Research

    Published on:

  42. 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

    Content type: Review

    Published on:

  43. 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

    Content type: Research

    Published on:

  44. 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

    Content type: Research

    Published on:

  45. 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

    Content type: Review

    Published on:

  46. 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

    Content type: Research

    Published on:

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