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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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

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

  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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

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

  32. 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
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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

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

  39. 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

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

  40. 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
  41. 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
  42. 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
  43. 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
  44. 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
  45. 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

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