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Journal of Patient-Reported Outcomes
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  1. 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

    Content type: Review

    Published on:

  2. 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

    Content type: Review

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  3. 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

    Content type: Research

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  4. 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

    Content type: Research

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  5. 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

    Content type: Research

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  6. 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

    Content type: Research

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  7. 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

    Content type: Research

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  8. 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

    Content type: Short report

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  9. 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

    Content type: Research

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  10. 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

    Content type: Research

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  12. 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

    Content type: Research

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  13. 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

    Content type: Research

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  14. 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

    Content type: Review

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  15. 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

    Content type: Research

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  16. 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

    Content type: Research

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  17. 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

    Content type: Research

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  18. 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

    Content type: Research

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  19. 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

    Content type: Research

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  20. 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

    Content type: Short report

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  21. 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

    Content type: Research

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  22. 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

    Content type: Research

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  24. 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

    Content type: Research

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  25. 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

    Content type: Research

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  26. 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

    Content type: Research

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  27. 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

    Content type: Research

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  28. 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

    Content type: Research

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  29. 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

    Content type: Research

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  30. 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

    Content type: Research

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  31. 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

    Content type: Review

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  32. 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

    Content type: Research

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  33. 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

    Content type: Research

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  34. 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

    Content type: Research

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  35. 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

    Content type: Review

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  36. 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

    Content type: Research

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  37. 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

    Content type: Research

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  38. 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

    Content type: Research

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  39. 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

    Content type: Short report

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  40. 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

    Content type: Research

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  41. 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

    Content type: Research

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  42. 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

    Content type: Research

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  43. 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

    Content type: Research

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  44. 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

    Content type: Research

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  45. 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

    Content type: Research

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  46. 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

    Content type: Research

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  47. 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

    Content type: Research

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  48. 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

    Content type: Research

    Published on:

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