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  1. The use of Patient-Reported Outcome Measures (PROMs) in routine clinical care can help ensure symptoms are identified, acknowledged and addressed. In 2007, the provincial cancer agency, Cancer Care Ontario, be...

    Authors: Nicole Montgomery, Doris Howell, Zahra Ismail, Susan J. Bartlett, Michael Brundage, Denise Bryant-Lukosius, Monika Krzyzanowska, Lesley Moody, Claire Snyder and Lisa Barbera

    Citation: Journal of Patient-Reported Outcomes 2020 4:101

    Content type: Research

    Published on:

  2. The intense itching associated with atopic dermatitis (AD) often causes patients to experience severe sleep disturbance. Here, we describe the results of a two-phase concept elicitation and cognitive interview...

    Authors: Carla Dias-Barbosa, Rodolfo Matos, Margaret Vernon, Colleen E. Carney, Andrew Krystal and Jorge Puelles

    Citation: Journal of Patient-Reported Outcomes 2020 4:100

    Content type: Research

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  3. Physiological and behavioral factors including hunger, satiety, food intake, and cravings are health determinants contributing to obesity. Patient-reported outcome (PRO) measures focused on eating-related fact...

    Authors: John Fastenau, Heather Rozjabek, Shanshan Qin, Lori McLeod, Lauren Nelson, Jia Ma and Nimanee Harris

    Citation: Journal of Patient-Reported Outcomes 2020 4:99

    Content type: Research

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  4. Measuring change in health-related quality-of-life (HRQoL) is important to assess the impact of disease and/or treatment. Ecological momentary assessment (EMA) comprises the repeated assessment of momentary HR...

    Authors: Tom H. Oreel, Philippe Delespaul, Iris D. Hartog, José P. S. Henriques, Justine E. Netjes, Alexander B. A. Vonk, Jorrit Lemkes, Michael Scherer-Rath, Hanneke W. M. van Laarhoven, Mirjam A. G. Sprangers and Pythia T. Nieuwkerk

    Citation: Journal of Patient-Reported Outcomes 2020 4:98

    Content type: Research

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  5. To evaluate the psychometric and measurement properties of two patient-reported outcome instruments, the menstrual pictogram superabsorbent polymer-containing version 3 (MP SAP-c v3) and Uterine Fibroid Daily ...

    Authors: Claudia Haberland, Anna Filonenko, Christian Seitz, Matthias Börner, Christoph Gerlinger, Helen Doll and Dorothea Wessiepe

    Citation: Journal of Patient-Reported Outcomes 2020 4:97

    Content type: Research

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  6. To optimize home care, it is essential to determine how care recipients experience quality of care. Traditionally, quality of care is measured with normative quality indicators such as safety, efficiency, or p...

    Authors: Roy Haex, Theresa Thoma-Lürken, Sandra Zwakhalen and Anna Beurskens

    Citation: Journal of Patient-Reported Outcomes 2020 4:96

    Content type: Research

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  7. Smoldering multiple myeloma (SMM) is an early form of multiple myeloma (MM). SMM is typically considered asymptomatic, and research on how it affects health-related quality of life (HRQoL) is limited. This stu...

    Authors: Milenka Jean-Baptiste, Katharine S. Gries, William R. Lenderking and John Fastenau

    Citation: Journal of Patient-Reported Outcomes 2020 4:95

    Content type: Research

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  8. Despite the high burden of disease in younger children there are few tools specifically designed to estimate Health Related Quality of Life (HRQoL) in children younger than 3 years of age. A previous paper des...

    Authors: Janine Verstraete, Lebogang Ramma and Jennifer Jelsma

    Citation: Journal of Patient-Reported Outcomes 2020 4:94

    Content type: Research

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  9. There is a need to assess the quality of treatment for Substance Use Disorder (SUD), and document SUD patients’ health-related quality of life (HRQoL). The study aims to describe Norwegian SUD patients’ HRQoL ...

    Authors: Kim Rand, Espen Ajo Arnevik and Espen Walderhaug

    Citation: Journal of Patient-Reported Outcomes 2020 4:92

    Content type: Research

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  10. Hip and knee replacement are effective procedures for end-stage arthritis that has not responded to medical management. However, until now, there have been no validated, patient-reported tools to measure early...

    Authors: Louise H. Strickland, David W. Murray, Hemant G. Pandit and Crispin Jenkinson

    Citation: Journal of Patient-Reported Outcomes 2020 4:91

    Content type: Research

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  11. Personal budgets for social and health care have been introduced in many European countries over recent decades. The assumption is that people with a personal budget are able to purchase care that matches thei...

    Authors: Anna Maria Marangos, Jurjen Iedema, Mirjam de Klerk, Isolde Woittiez and Peter P. Groenewegen

    Citation: Journal of Patient-Reported Outcomes 2020 4:90

    Content type: Research

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  12. Within current literature and practice, the category of patient-reported outcome (PRO) measures has been expanded into the broader category of clinical outcome assessments (COAs), which includes the subcategor...

    Authors: Shawn McKown, Catherine Acquadro, Caroline Anfray, Benjamin Arnold, Sonya Eremenco, Christelle Giroudet, Mona Martin and Dana Weiss

    Citation: Journal of Patient-Reported Outcomes 2020 4:89

    Content type: Review

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  13. A randomized controlled pilot trial was conducted to assess if melanoma patients treated with immunotherapy had the number of grade 3 or 4 adverse events during treatment reduced by 50% using a tailored electr...

    Authors: Lærke K. Tolstrup, Lars Bastholt, Karin B. Dieperink, Sören Möller, Ann-Dorthe Zwisler and Helle Pappot

    Citation: Journal of Patient-Reported Outcomes 2020 4:88

    Content type: Research

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  14. PROMs can help healthcare professionals gain an improved understanding of patients’ physical burdens, functional levels, and (health-related) quality of life throughout disease and medical treatment. The aim o...

    Authors: Stine Thestrup Hansen, Mette Kjerholt, Sarah Friis Christensen, John Brodersen and Bibi Hølge-Hazelton

    Citation: Journal of Patient-Reported Outcomes 2020 4:87

    Content type: Research

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  15. Endometriosis is a common problem in women of reproductive age and has impacts on health-related quality of life and productivity. Fatigue is an important part of the burden of endometriosis, it is not often i...

    Authors: Robin Pokrzywinski, Ahmed M. Soliman, Eric Surrey, Michael C. Snabes and Karin S. Coyne

    Citation: Journal of Patient-Reported Outcomes 2020 4:86

    Content type: Research

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  16. Two decades of research on quality-of-life (QOL) appraisal have demonstrated links between patient experience and health outcomes and have accounted for both intra-individual change and inter-individual differ...

    Authors: Carolyn E. Schwartz, Roland B. Stark and Bruce D. Rapkin

    Citation: Journal of Patient-Reported Outcomes 2020 4:85

    Content type: Research

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  17. To develop and evaluate a measurement scale for multi-domain assessment of the quality of life of family caregivers of persons with dementia (PWD) in Singapore, a multi-ethic society in South-East Asia where E...

    Authors: Yin Bun Cheung, Irene Teo, Wee Shiong Lim, Allyn Hum, Shirlyn H. S. Neo, Grace M. Yang, Geok Ling Lee, Gretchen Tan and Dennis C. C. Seow

    Citation: Journal of Patient-Reported Outcomes 2020 4:84

    Content type: Research

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  18. Patient-Reported Outcomes provide an opportunity for patients to establish dialogue with pharmaceutical or biotechnology companies about their health conditions without interpretation by a clinician or anyone ...

    Authors: Melodi Harfouche, Priya S. Kishnani, Eva Krusinska, Jamie Gault, Sheela Sitaraman, Amanda Sowinski, Irina Katz, Stephanie Austin, Margi Goldstein and Andrew E. Mulberg

    Citation: Journal of Patient-Reported Outcomes 2020 4:83

    Content type: Research

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  19. The Elements of Desire Questionnaire (EDQ) is a patient-reported outcome (PRO) measure developed to evaluate sexual desire and was included in two identically designed phase 3 clinical trials (RECONNECT) as an...

    Authors: Dennis A. Revicki, Stanley E. Althof, Leonard R. Derogatis, Sheryl A. Kingsberg, Hilary Wilson, Amama Sadiq, Julie Krop, Robert Jordan and Johna Lucas

    Citation: Journal of Patient-Reported Outcomes 2020 4:82

    Content type: Research

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  20. The U.S. National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE™) is a library of items for assessing symptomatic adverse events by patie...

    Authors: Evalien Veldhuijzen, Iris Walraven, Sandra A. Mitchell, Elizabeth Yohe Moore, Shawn M. McKown, Matthew Lauritzen, Katherine J. Kim, José S. A. Belderbos and Neil K. Aaronson

    Citation: Journal of Patient-Reported Outcomes 2020 4:81

    Content type: Research

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  21. Evolving regulatory guidelines recommend routine assessment of the acceptability of pediatric oral medicines throughout clinical development processes. However, such assessment is problematic owing to a lack o...

    Authors: Diane M. Turner-Bowker, Kristina An Haack, Meaghan Krohe, Andrew Yaworsky, Norma Vivas, Masami Kelly, Godhuli Chatterjee, Emily Chaston, Erin Mann and Matthew Reaney

    Citation: Journal of Patient-Reported Outcomes 2020 4:80

    Content type: Research

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  22. The aim of this study was to assess the validity and reliability of the Patient Enablement Instrument (PEI) in Finnish health care centre patients. A pilot study was conducted to assess the content validity of...

    Authors: Elina Tolvanen, Tuomas H. Koskela, Mika Helminen and Elise Kosunen

    Citation: Journal of Patient-Reported Outcomes 2020 4:79

    Content type: Research

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  23. The Swedish National Quality Registries (NQRs) contain individual-level health care data for specific patient populations, or patients receiving specific interventions. Approximately 90% of the 105 Swedish NQR...

    Authors: Olivia Ernstsson, Mathieu F. Janssen and Emelie Heintz

    Citation: Journal of Patient-Reported Outcomes 2020 4:78

    Content type: Research

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  24. Issues arising from a lack of outcome standardisation in health research may be addressed by the use of core outcome sets (COS), which represent agreed-upon recommendations regarding what outcomes should be me...

    Authors: Imogen Ramsey, Marion Eckert, Amanda D. Hutchinson, Julie Marker and Nadia Corsini

    Citation: Journal of Patient-Reported Outcomes 2020 4:77

    Content type: Review

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  25. Alopecia areata (AA) is characterized by hair loss that can affect the scalp and body. This study describes the psychosocial burden of AA.

    Authors: Natalie V. J. Aldhouse, Helen Kitchen, Sarah Knight, Jake Macey, Fabio P. Nunes, Yves Dutronc, Natasha Mesinkovska, Justin M. Ko, Brett A. King and Kathleen W. Wyrwich

    Citation: Journal of Patient-Reported Outcomes 2020 4:76

    Content type: Research

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  26. Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one’s most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-know...

    Authors: Jason A. Randall, Aiste Guobyte, Laure Delbecque, Louise Newton, Tara Symonds and Theresa Hunter

    Citation: Journal of Patient-Reported Outcomes 2020 4:75

    Content type: Research

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  27. Social media platforms give patients a voice by allowing them to discuss their health and connect with others. These unfiltered and genuine reports offer direct access to what matters most to patients. Explori...

    Authors: Katharine S. Gries and John Fastenau

    Citation: Journal of Patient-Reported Outcomes 2020 4:74

    Content type: Research

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  28. One of the main aims of rehabilitation is to improve participation. Patient-Reported Outcomes Measurement Information System (PROMIS®) item banks ‘Ability to Participate in Social roles and Activities, (PROMIS...

    Authors: Sietske J. Tamminga, Félicie M. van Vree, Gerard Volker, Leo D. Roorda, Caroline B. Terwee, Paulien H. Goossens and Thea P. M. Vliet Vlieland

    Citation: Journal of Patient-Reported Outcomes 2020 4:73

    Content type: Short report

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  29. Health related quality of life (HRQOL) is an important indicator of long-term well-being, influenced by environmental factors such as family, culture, societal norms and available resources. This study aimed t...

    Authors: Laila A. Ladak, Robyn Gallagher, Babar S. Hasan, Khadija Awais, Ahmed Abdullah and Janice Gullick

    Citation: Journal of Patient-Reported Outcomes 2020 4:72

    Content type: Research

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  30. Increasing numbers of ovarian cancer patients are living longer and requiring regular follow-up to detect disease recurrence. New models of follow-up care are needed to meet the growing number and needs of thi...

    Authors: Leanne Shearsmith, Fiona Kennedy, Oana C. Lindner and Galina Velikova

    Citation: Journal of Patient-Reported Outcomes 2020 4:71

    Content type: Short report

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  31. Robust outcome measures are needed to assess and monitor the impact of chronic low back pain (CLBP) on physical functioning. The Roland Morris Disability Questionnaire (RMDQ) is a well-established measure desi...

    Authors: Claire Burbridge, Jason A. Randall, Lucy Abraham and Elizabeth Nicole Bush

    Citation: Journal of Patient-Reported Outcomes 2020 4:70

    Content type: Research

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  32. The lower-risk (low and intermediate-1 risk based on IPSS) myelodysplastic syndrome (MDS) has a negative impact on patients’ health-related quality of life (HRQoL). Patient Reported Outcomes (PROs) instruments...

    Authors: Jeremiah J. Trudeau, Jianming He, Esther Rose, Charlotte Panter, Sharan Randhawa and Adam Gater

    Citation: Journal of Patient-Reported Outcomes 2020 4:69

    Content type: Research

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  33. Published in 2019, a new addendum to the ICH E9 guideline presents the estimand framework as a systematic approach to ensure alignment among clinical trial objectives, trial execution/conduct, statistical anal...

    Authors: Rachael Lawrance, Evgeny Degtyarev, Philip Griffiths, Peter Trask, Helen Lau, Denise D’Alessio, Ingolf Griebsch, Gudrun Wallenstein, Kim Cocks and Kaspar Rufibach

    Citation: Journal of Patient-Reported Outcomes 2020 4:68

    Content type: Commentary

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  34. Adaptation of a patient-reported outcomes survey into a new language requires careful translation procedures as well as qualitative and quantitative psychometric testing. This study aimed to evaluate the basic...

    Authors: Ahmad AboAbat, Hazem Qannam, Jakob Bue Bjorner and Mohamad Al-Tannir

    Citation: Journal of Patient-Reported Outcomes 2020 4:67

    Content type: Research

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  35. Retinoblastoma is a childhood retinal cancer with lifelong consequences such as vision loss and increased risk of second cancer. Patient-reported outcome measures (PROMs) are instruments that measure outcomes ...

    Authors: Ana Janic, Sylvie Bowden, Sarah Levy, Jennifer Stinson and Helen Dimaras

    Citation: Journal of Patient-Reported Outcomes 2020 4:66

    Content type: Review

    Published on:

  36. Approximately 7–10% of Parkinson’s disease (PD) patients carry a GBA (Glucocerebrosidase) mutation (GBA-PD patients), which may influence the disease’s clinical course.

    Authors: N. Bonner, S. Bozzi, L. Morgan, B. Mason, M. J. Peterschmitt, T. Z. Fischer, R. Arbuckle and M. Reaney

    Citation: Journal of Patient-Reported Outcomes 2020 4:65

    Content type: Research

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  37. Anemia is a frequent complication of chronic kidney disease (CKD) that negatively affects patients’ health-related quality of life.

    Authors: Susan D. Mathias, Steven I. Blum, Vanja Sikirica, Kirsten L. Johansen, Hilary H. Colwell and Tony Okoro

    Citation: Journal of Patient-Reported Outcomes 2020 4:64

    Content type: Research

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  38. An intensive care unit (ICU) diary is a relatively new concept in low middle-income countries (LMICs). Illiteracy and socio-cultural inhibitions may affect the use and utility of this intervention, which has p...

    Authors: Swagata Tripathy, Swati Priyadarshini Acharya, Alok Kumar Sahoo, Jayanta Kumar Mitra, Kishen Goel, Suma Rabab Ahmad and Upendra Hansdah

    Citation: Journal of Patient-Reported Outcomes 2020 4:63

    Content type: Research

    Published on:

  39. To assess participation of children with visual impairment, the Participation and Activity Inventory for Children and Youth (PAI-CY) was recently developed. This study assessed some initial psychometric proper...

    Authors: Ellen B. M. Elsman, Ruth M. A. van Nispen and Gerardus H. M. B. van Rens

    Citation: Journal of Patient-Reported Outcomes 2020 4:62

    Content type: Short report

    Published on:

  40. The purpose of this study was to evaluate the psychometric properties of the PROMIS-Physical Function (PF) and Worst Stiffness Numeric Rating Scale (NRS) among patients with tenosynovial giant cell tumors (TGCT).

    Authors: Rebecca M. Speck, Xin Ye, Nicholas M. Bernthal and Heather L. Gelhorn

    Citation: Journal of Patient-Reported Outcomes 2020 4:61

    Content type: Research

    Published on:

  41. To assess the relationship between patient-reported quality-of-life (QOL) outcomes and provider-assessed adverse events (AEs) during head-and-neck (H&N) radiotherapy (RT).

    Authors: Joshua R. Niska, Cameron S. Thorpe, Michele Y. Halyard, Angelina D. Tan, Pamela J. Atherton, Amylou C. Dueck, Samir H. Patel and Jeff A. Sloan

    Citation: Journal of Patient-Reported Outcomes 2020 4:60

    Content type: Research

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  42. The symptoms of post-polio syndrome (PPS) and its resulting disabilities can affect quality of life and the ability to perform daily activities. No study has comprehensively analysed how various patient-report...

    Authors: Vanya Gocheva, Patricia Hafner, Anna-Lena Orsini, Simone Schmidt, Sabine Schaedelin, Nicole Rueedi, Daniela Rubino-Nacht, Peter Weber and Dirk Fischer

    Citation: Journal of Patient-Reported Outcomes 2020 4:59

    Content type: Research

    Published on:

  43. Immune-checkpoint inhibitors (ICI) have shown significant benefits for overall survival across various cancer types. Patient-reported outcomes (PROs) are assessed in clinical trials as a measure of efficacy. H...

    Authors: Sara Colomer-Lahiguera, Denise Bryant-Lukosius, Sarah Rietkoetter, Lorraine Martelli, Karin Ribi, Donna Fitzpatrick-Lewis, Diana Sherifali, Angela Orcurto, Rosalyn Juergens and Manuela Eicher

    Citation: Journal of Patient-Reported Outcomes 2020 4:58

    Content type: Research

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  44. Patients’ behaviors play a key role in chronic disease management, but how effective they are may depend on how engaged they feel. The objective was to develop a short measure of how much patients felt engaged...

    Authors: Suzanne Brodney, K. D. Valentine, Floyd J. Fowler Jr and Michael J. Barry

    Citation: Journal of Patient-Reported Outcomes 2020 4:57

    Content type: Research

    Published on:

  45. To give an overview of the multicenter Prostate Cancer Outcomes (PCO) study, involving paper-based and web-based collection of patient-reported outcome measures (PROM) in patients undergoing local treatment fo...

    Authors: Christoph Kowalski, Rebecca Roth, Günther Carl, Günter Feick, Alisa Oesterle, Andreas Hinkel, Thomas Steiner, Marko Brock, Björn Kaftan, Rainer Borowitz, Niko Zantl, Axel Heidenreich, Andreas Neisius, Christopher Darr, Christian Bolenz, Burkhard Beyer…

    Citation: Journal of Patient-Reported Outcomes 2020 4:56

    Content type: Short report

    Published on:

  46. Effective management of patients with chronic kidney disease (CKD) relies on timely detection of clinical deterioration towards end stage kidney failure. We aimed to design an electronic Patient-Reported Outco...

    Authors: Derek Kyte, Nicola Anderson, Ram Auti, Olalekan Lee Aiyegbusi, Jon Bishop, Andrew Bissell, Elizabeth Brettell, Melanie Calvert, Marie Chadburn, Paul Cockwell, Mary Dutton, Helen Eddington, Elliot Forster, Gabby Hadley, Natalie J. Ives, Louise Jackson…

    Citation: Journal of Patient-Reported Outcomes 2020 4:55

    Content type: Research

    Published on:

  47. Papulopustular rash is a common class effect of epidermal growth factor receptor inhibitors (EGFRI) that can affect patients’ health-related quality of life and cause disruptions to treatment. SWOG S1013 (NCT0...

    Authors: Siu-Fun Wong, Joseph M. Unger, James L. Wade III, Lynne I. Wagner, Mario E. Lacouture, Keisha C. Humphries, Anna Moseley, Kathryn Arnold, Mario R. Velasco Jr, Justin D. Floyd, Benjamin T. Esparaz, Afsaneh Barzi, Heinz-Josef Lenz, Marianna Koczywas, Shaker Dakhil, Gary V. Burton…

    Citation: Journal of Patient-Reported Outcomes 2020 4:54

    Content type: Research

    Published on:

  48. Migraine has a severe impact on health-related quality of life (HRQoL) affecting physical, emotional, and social aspects of daily living of an individual. Preventive treatment has been demonstrated to improve ...

    Authors: Janet H. Ford, Shonda A. Foster, Russell M. Nichols, Antje Tockhorn-Heidenreich, Wenyu Ye, James Jackson and Sarah Cotton

    Citation: Journal of Patient-Reported Outcomes 2020 4:53

    Content type: Research

    Published on:

  49. Between 1987 and 1990, the EuroQol Group developed a 5-dimension health-related quality of life instrument, originally known as ‘the EuroQol instrument’, which since 1995 has been called the ‘EQ-5D’. For sever...

    Authors: Richard Brooks, Kristina S. Boye and Bernhard Slaap

    Citation: Journal of Patient-Reported Outcomes 2020 4:52

    Content type: Commentary

    Published on:

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