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  1. Patients with cystic fibrosis (CF) experience significant disease burden, including progressive pulmonary decline and reduced survival. This multicenter qualitative study was conducted to develop a new patient...

    Authors: Kelly P. McCarrier, Mariam Hassan, Paul Hodgkins, Ellison Suthoff, Lisa J. McGarry and Mona L. Martin

    Citation: Journal of Patient-Reported Outcomes 2020 4:36

    Content type: Research

    Published on:

  2. Goal Attainment Scaling (GAS) is an individualized outcome measure that allows the setting of personalized treatment goals. We compared the responsiveness of GAS when individuals set only one goal instead of t...

    Authors: Lisa McGarrigle and Kenneth Rockwood

    Citation: Journal of Patient-Reported Outcomes 2020 4:35

    Content type: Research

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  3. The Singapore Caregiver Quality of Life Scale (SCQOLS) was recently developed and validated in two languages - English and Chinese. The total and domain scores are scaled to range from 0 to 100. However, the s...

    Authors: Yin Bun Cheung, Shirlyn H. S. Neo, Grace M. Yang, Irene Teo, Geok Ling Lee, Debra L. M. Qu, Audrey R. X. Koh, Julian Thumboo and Hwee Lin Wee

    Citation: Journal of Patient-Reported Outcomes 2020 4:34

    Content type: Research

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  4. Endometriosis-related fatigue is common and negatively impacts multiple areas of many women’s lives, particularly in day-to-day activities, social activities, physical activities, mood and emotions, relationsh...

    Authors: Dana DiBenedetti, Ahmed M. Soliman, Catherine Gupta and Eric S. Surrey

    Citation: Journal of Patient-Reported Outcomes 2020 4:33

    Content type: Research

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  5. Alertness is an important part of attention which is different from the opposite of sleepiness. This study aimed to translate and assess the measurement properties of the Toronto Hospital Alertness Test (THAT)...

    Authors: Sha Li, Daniel Yee Tak Fong, Janet Yuen Ha Wong, Kate Wilkinson, Colin Shapiro, Edmond Pui Hang Choi, Bradley McPherson, Cindy Lo Kuen Lam and Mary Sau Man Ip

    Citation: Journal of Patient-Reported Outcomes 2020 4:32

    Content type: Research

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  6. Human T-cell lymphotropic virus type 1 (HTLV-1) spreads silently in the world’s population and causes several syndromes. Among these, HTLV-1 associated myelopathy, also called tropical spastic paraparesis (HAM...

    Authors: Genildes Oliveira Santana, Ana Mary Libório, Ana Verena Galvão, Milena Pereira Pondé and Katia Nunes Sá

    Citation: Journal of Patient-Reported Outcomes 2020 4:31

    Content type: Research

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  7. Neurotrophic keratopathy/keratitis (NK) is a rare disease of the cornea that can lead to anatomical loss of the eye. Little is known about the NK experience from the patients’ perspective. The objectives of th...

    Authors: Lindsey T. Murray, Julie McCormack, Ioana Grobeiu, Ingela Wiklund, Miriam Kimel and Floortje Van Nooten

    Citation: Journal of Patient-Reported Outcomes 2020 4:30

    Content type: Research

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  8. According to studies of phenylketonuria (PKU), the Brazilian population’s metabolic control shows unsatisfactory indexes from childhood. Research on patients’ perceived difficulties or barriers to adherence to...

    Authors: Katia Irie Teruya, Eduardo Remor and Ida Vanessa Doederlein Schwartz

    Citation: Journal of Patient-Reported Outcomes 2020 4:29

    Content type: Research

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  9. Colorectal cancer (CRC) is prevalent in the developed world. Favourable survival rates highlight the need to better understand CRC survivors’ experiences of long-term impacts of treatment, which can in turn in...

    Authors: Claudia Rutherford, Fabiola Müller, Nasiba Faiz, Madeleine T. King and Kate White

    Citation: Journal of Patient-Reported Outcomes 2020 4:27

    Content type: Research

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  10. A cancer diagnosis is potentially life-threatening, likely causing distress and uncertainty, which may be psychologically debilitating. Depression and anxiety are commonly underdiagnosed and undertreated in ca...

    Authors: Chindhu Shunmugasundaram, Claudia Rutherford, Phyllis N. Butow, Puma Sundaresan and Haryana M. Dhillon

    Citation: Journal of Patient-Reported Outcomes 2020 4:26

    Content type: Review

    Published on:

  11. Burns are a global health problem affecting the survivors and disrupting many aspects of their lives. It is the second most common injury in rural Nepal accounting 5% of disabilities. Burn Specific Health Scal...

    Authors: Regan Shakya, Misu Manandhar, Roshan Dangol and Archana Shrestha

    Citation: Journal of Patient-Reported Outcomes 2020 4:25

    Content type: Research

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  12. Successful community-engaged research depends on the quality of the collaborative partnerships between community -members and academic researchers and may take several forms depending on the purpose which dict...

    Authors: Lauri Andress, Tristen Hall, Sheila Davis, Judith Levine, Kimberly Cripps and Dominique Guinn

    Citation: Journal of Patient-Reported Outcomes 2020 4:24

    Content type: Research

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  13. The Health Utilities Index Mark 3 (HUI3) is a generic multi-attribute, preference-based system for assessing health-related quality of life. It is widely used overseas as an outcome measure and for estimating ...

    Authors: Shinichi Noto, Takeru Shiroiwa, Makoto Kobayashi, Tatsunori Murata, Shunya Ikeda and Takashi Fukuda

    Citation: Journal of Patient-Reported Outcomes 2020 4:23

    Content type: Research

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  14. The FACT-8D is a new cancer-specific, preference-based measure (PBM) of health, derived from the Functional Assessment of Cancer Therapy – General (FACT-G) questionnaire. The FACT-8D’s measurement properties h...

    Authors: Michael Herdman, Cicely Kerr, Marco Pavesi, Jamie Garside, Andrew Lloyd, Patricia Cubi-Molla and Nancy Devlin

    Citation: Journal of Patient-Reported Outcomes 2020 4:22

    Content type: Research

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  15. ASCQ-Me®, Neuro-QoL™, NIH Toolbox®, and PROMIS®, which are health-related quality of life measures collectively known as HealthMeasures, have experienced rapid uptake in the scientific community with over 1700...

    Authors: Janel Hanmer, Roxanne E. Jensen and Nan Rothrock

    Citation: Journal of Patient-Reported Outcomes 2020 4:21

    Content type: Commentary

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  16. Individuals with vitiligo have an increased risk of depression, anxiety, social isolation and detrimental effects on body image/self-esteem. However, assessments of quality of life (QoL) impact have not focuse...

    Authors: Gabriela Andrade, Sneha Rangu, Lauren Provini, Elana Putterman, Abigail Gauthier and Leslie Castelo-Soccio

    Citation: Journal of Patient-Reported Outcomes 2020 4:20

    Content type: Research

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  17. Partners of young breast cancer survivors (BCS) are at increased risk for deficits in quality of life (QoL). To intervene effectively, it is important to understand how the breast cancer experience impacts par...

    Authors: Andrea Cohee, Susan Storey, Joseph G. Winger, David Cella, Timothy Stump, Patrick O. Monahan and Victoria L. Champion

    Citation: Journal of Patient-Reported Outcomes 2020 4:19

    Content type: Research

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  18. Insomnia is a frequent sleeping disorder in the general and clinical population. With an increasing proportion of health care services being provided as outpatient care, a short, valid and reliable tool is nee...

    Authors: Karin Brochstedt Dieperink, Caroline Matilde Elnegaard, Bodil Winther, Anna Lohman, Ida Zerlang, Sören Möller and Graziella Zangger

    Citation: Journal of Patient-Reported Outcomes 2020 4:18

    Content type: Research

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  19. It is unclear whether data from patient-reported outcome measures (PROMs) are captured and used by clinicians despite policy initiatives. We examined the extent to which fall risk and urinary incontinence (UI)...

    Authors: Paul J. Barr, Scott A. Berry, Wendolyn S. Gozansky, Deanna B. McQuillan, Colleen Ross, Don Carmichael, Andrea M. Austin, Travis D. Satterlund, Karen E. Schifferdecker, Lora Council, Michelle D. Dannenberg, Ariel T. Wampler, Eugene C. Nelson and Jonathan Skinner

    Citation: Journal of Patient-Reported Outcomes 2020 4:17

    Content type: Research

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  20. The validation of the Treatment-induced Neuropathy Assessment Scale (TNAS v2.0), a patient-reported outcome measure of symptoms associated with cancer treatment-induced peripheral neuropathy (TIPN), was previo...

    Authors: Tito R. Mendoza, Loretta A. Williams, Qiuling Shi, Xin Shelley Wang, Oluwatosin Bamidele, Jeanie F. Woodruff and Charles S. Cleeland

    Citation: Journal of Patient-Reported Outcomes 2020 4:15

    Content type: Research

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  21. Although the incidence, severity and mortality of Clostridioides (Clostridium) difficile infection (CDI) have been increasing, patients’ quality of life changes resulting from CDI have not been studied thoroughly...

    Authors: Lise Lurienne, Pierre-Alain Bandinelli, Thibaut Galvain, Charles-Alexis Coursel, Caterina Oneto and Paul Feuerstadt

    Citation: Journal of Patient-Reported Outcomes 2020 4:14

    Content type: Research

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  22. Endometriosis is a common, chronic, impactful condition in women of reproductive age. In the absence of established sensitive and specific biomarkers, disease severity is determined by patient-reported symptom...

    Authors: Adam Gater, Fiona Taylor, Christian Seitz, Christoph Gerlinger, Kamonthip Wichmann and Claudia Haberland

    Citation: Journal of Patient-Reported Outcomes 2020 4:13

    Content type: Research

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  23. The purpose of the study was to pilot test the English and Urdu version of the Colon Cancer Screening Behaviours Survey among South Asians in Canada. The first objective was to evaluate feasibility of administ...

    Authors: Joanne Crawford, Frederick Morfaw, Farah Ahmad, Lehana Thabane and Angela Frisina

    Citation: Journal of Patient-Reported Outcomes 2020 4:12

    Content type: Research

    Published on:

  24. PROMIS Pediatric patient-reported outcome measures were developed with children from the general population, and their content validity has not been established in children with chronic disease. This study was...

    Authors: Christopher B. Forrest, Kathryn D. Forrest, Jennifer L. Clegg, Anna de la Motte, Sandra Amaral, Andrew B. Grossman and Susan L. Furth

    Citation: Journal of Patient-Reported Outcomes 2020 4:11

    Content type: Research

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  25. The value of using real-time patient-reported outcome (PRO) measures in cancer communication has gained attention both in the clinic and in research. Despite this, no internationally accepted guidelines or tra...

    Authors: Pernille C. Skovlund, Sissel Ravn, Lene Seibaek, Henriette Vind Thaysen, Kirsten Lomborg and Berit Kjærside Nielsen

    Citation: Journal of Patient-Reported Outcomes 2020 4:10

    Content type: Research

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  26. Response-shift effects impact the interpretation of change in quality-of-life (QOL) measures developed with classical test theory (CTT) methods. This study evaluated the impact of response shift on measures de...

    Authors: Carolyn E. Schwartz, Brian D. Stucky, Wesley Michael and Bruce D. Rapkin

    Citation: Journal of Patient-Reported Outcomes 2020 4:8

    Content type: Research

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  27. Over the past decade, the importance of person-centered care has led to increased interest in patient-reported outcome measures (PROMs). In cardiovascular care, selecting an appropriate PROM for clinical use o...

    Authors: Beatrix Algurén, Michaela Coenen, Dan Malm, Bengt Fridlund, Jan Mårtensson and Kristofer Årestedt

    Citation: Journal of Patient-Reported Outcomes 2020 4:7

    Content type: Review

    Published on:

  28. Technical innovation to assess patient-reported outcomes (PROs) facilitates their implementation in clinical practice. In particular, mobile applications (apps) allow PROs to be assessed outside of the clinica...

    Authors: Kathrin I. Fischer, Diarmuid De Faoite and Matthias Rose

    Citation: Journal of Patient-Reported Outcomes 2020 4:6

    Content type: Research

    Published on:

  29. Patient Reported Experience Measures are promoted to be used as an integrated measurement approach in which outcomes are used to improve individual care (micro level), organisational quality (meso level) and e...

    Authors: Marjolein van Rooijen, Stephanie Lenzen, Ruth Dalemans, Albine Moser and Anna Beurskens

    Citation: Journal of Patient-Reported Outcomes 2020 4:5

    Content type: Research

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  30. Patient-reported outcome measures (PROMs) are widely used in the United Kingdom (UK) and internationally to report and monitor patients’ subjective assessments of their symptoms and functional status and also ...

    Authors: J. Carlton, T. Peasgood, S. Khan, R. Barber, J. Bostock and A. D. Keetharuth

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

    Content type: Commentary

    Published on:

  31. This article addresses patient-reported outcome (PRO)-based follow-up used as a substitute for regularly scheduled follow-ups. In PRO-based follow-up, patients’ PRO data filled in by the patients at home are u...

    Authors: Caroline Trillingsgaard Mejdahl, Liv Marit Valen Schougaard, Niels Henrik Hjollund, Erik Riiskjær and Kirsten Lomborg

    Citation: Journal of Patient-Reported Outcomes 2020 4:3

    Content type: Research

    Published on:

  32. Hypertension is the most prevalent risk factor for cardiovascular disease globally. Roughly one-third of the adult population has hypertension. However, most people diagnosed with hypertension do not benefit f...

    Authors: János Valery Gyuricza, Ana Flávia Pires Lucas d’Oliveira, Lucas Bastos Marcondes Machado and John Brodersen

    Citation: Journal of Patient-Reported Outcomes 2019 4:2

    Content type: Research

    Published on:

  33. To develop and assess the psychometric properties of the Thai version of the Graves’ Ophthalmopathy Quality of Life (GO-QOL) questionnaire.

    Authors: Mingkwan Lumyongsatien, Benjama Keeratidamkerngsakul, Kanokrat Pornpanich, Sumalee Vangveeravong, Preamjit Saonanon, Damrong Wiwatwongwana, Pornchai Mahaisavariya, Orapan Aryasit and Krit Pongpirul

    Citation: Journal of Patient-Reported Outcomes 2019 4:1

    Content type: Research

    Published on:

  34. Patient reported outcomes (PROs) provide information on a patient’s health status coming directly from the patient. Measuring PROs with patient reported outcome measures (PROMs) has gained wide interest in cli...

    Authors: Philip J. van der Wees, Eva W. Verkerk, Marjolein E. A. Verbiest, Marloes Zuidgeest, Carla Bakker, Jozé Braspenning, Dolf de Boer, Caroline B. Terwee, Ildikó Vajda, Anna Beurskens and Simone A. van Dulmen

    Citation: Journal of Patient-Reported Outcomes 2019 3:75

    Content type: Research

    Published on:

  35. The patient-doctor relationship is crucial to provide person-centred care, allowing the alleviation of symptom burden caused by disease or treatment. Implementing Patient Reported Outcome Measures (PROMs) is s...

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

    Citation: Journal of Patient-Reported Outcomes 2019 3:74

    Content type: Research

    Published on:

  36. Early-stage breast cancer is often treated with breast-conserving therapy (BCT), including lumpectomy with radiation therapy. Patients’ expectations of BCT remain largely unknown. Expectations affect perceptio...

    Authors: Sarah Fuzesi, Karima Becetti, Anne F. Klassen, Mary L. Gemignani and Andrea L. Pusic

    Citation: Journal of Patient-Reported Outcomes 2019 3:73

    Content type: Research

    Published on:

  37. Bone metastasis (BM) is the most common site of disease in metastatic breast cancer (MBC) patients. BM impacts health-related quality of life (HRQoL). We tested prospectively the psychometric properties of the...

    Authors: A. Barnadas, M. Muñoz, M. Margelí, J. I. Chacón, J. Cassinello, S. Antolin, E. Adrover, M. Ramos, E. Carrasco, M. A. Jimeno, B. Ojeda, X. González, S. González, M. Constenla, J. Florián, A. Miguel…

    Citation: Journal of Patient-Reported Outcomes 2019 3:72

    Content type: Research

    Published on:

  38. The literature on the specification and measurement of the outcomes of the healthcare transition from pediatric to adult centered-care is scarce and methodologically weak. To address these gaps, we conducted a...

    Authors: Jessica Pierce, Karen Aroian, Elizabeth Schifano, Anthony Gannon and Tim Wysocki

    Citation: Journal of Patient-Reported Outcomes 2019 3:71

    Content type: Research

    Published on:

  39. Ankle fractures are painful and debilitating injuries that pose a significant burden to society and healthcare systems. Patient reported outcome measures (PROMs) are commonly used outcome measures in clinical ...

    Authors: Rebecca McKeown, David R. Ellard, Abdul-Rasheed Rabiu, Eleni Karasouli and Rebecca S. Kearney

    Citation: Journal of Patient-Reported Outcomes 2019 3:70

    Content type: Review

    Published on:

  40. The Patient-Reported Outcomes Measurement Information System® (PROMIS) includes a Physical Function (PF) item bank and an Upper Extremity (UE) item bank, which is composed of a subset of items from the PF bank...

    Authors: Aaron J. Kaat, Chester “ Trip” Buckenmaier III, Karon F. Cook, Nan E. Rothrock, Benjamin D. Schalet, Richard C. Gershon and Mark S. Vrahas

    Citation: Journal of Patient-Reported Outcomes 2019 3:69

    Content type: Research

    Published on:

  41. There is a lack of patient derived, child specific outcome measures to capture what health outcomes are important to children with Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME). We developed a new ...

    Authors: Roxanne M. Parslow, Alison Shaw, Kirstie L. Haywood and Esther Crawley

    Citation: Journal of Patient-Reported Outcomes 2019 3:67

    Content type: Research

    Published on:

  42. Ulcerative colitis (UC) often first presents during adolescence and early adulthood. Primary symptoms of UC are well known, yet similarities and differences of disease experience in adults and adolescents are ...

    Authors: Louise Newton, Jason A. Randall, Theresa Hunter, Shannon Keith, Tara Symonds, Roberta J. Secrest, Wendy J. Komocsar, Sarah E. Curtis, Linda Abetz-Webb, Michael Kappelman and April N. Naegeli

    Citation: Journal of Patient-Reported Outcomes 2019 3:66

    Content type: Research

    Published on:

  43. Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease characterized by airflow obstruction that leads to shortness of breath and substantial negative impacts on health-related quality o...

    Authors: Susan E. Yount, Charles Atwood, James Donohue, Ron D. Hays, Debra Irwin, Nancy Kline Leidy, Honghu Liu, Karen L. Spritzer and Darren A. DeWalt

    Citation: Journal of Patient-Reported Outcomes 2019 3:65

    Content type: Research

    Published on:

  44. Carcinoid syndrome is associated with a reduced quality of life that can be attributed to symptoms such as diarrhea and fatigue as well as social and financial issues. This study was conducted to psychometrica...

    Authors: Stacie Hudgens, John Ramage, Matthew Kulke, Emily Bergsland, Lowell Anthony, Martyn Caplin, Kjell Öberg, Marianne Pavel, Jonathon Gable, Phillip Banks, Qi Melissa Yang and Pablo Lapuerta

    Citation: Journal of Patient-Reported Outcomes 2019 3:64

    Content type: Research

    Published on:

  45. To examine the acceptability of a Patient Reported Outcome Measure (PROM) that assesses perceptions and experiences of implants for breast reconstruction or augmentation, and the feasibility of implementing it...

    Authors: Sze Ng, Maggie Kirkman, Jane Fisher, Andrea Pusic, Emily Parker, Rodney D. Cooter, Elisabeth Elder, Colin Moore, John McNeil and Ingrid Hopper

    Citation: Journal of Patient-Reported Outcomes 2019 3:63

    Content type: Research

    Published on:

  46. The Bladder Cancer Index (BCI) and Functional Assessment of Cancer Therapy-Bladder-Cystectomy (FACT-Bl-Cys) were developed to measure disease-specific health-related quality of life (HRQOL) in bladder cancer p...

    Authors: Charlotte T. J. Michels, Carl J. Wijburg, Inger L. Abma, J. Alfred Witjes, Janneke P. C. Grutters and Maroeska M. Rovers

    Citation: Journal of Patient-Reported Outcomes 2019 3:62

    Content type: Research

    Published on:

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