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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. Patient-reported outcomes (PROs) are increasingly collected in clinical trials as they provide unique information on the physical, functional and psychological impact of a treatment from the patient’s perspect...

    Authors: Samantha Cruz Rivera, Christel McMullan, Laura Jones, Derek Kyte, Anita Slade and Melanie Calvert
    Citation: Journal of Patient-Reported Outcomes 2020 4:51
  18. The aim of this study was to evaluate the usefulness of EQ-5D as a patient-reported outcome measure using different analytical methods. Especially we used the Paretian Classification of Health Change, to see i...

    Authors: Åsa Jonsson, Lotti Orwelius, Ulf Dahlstrom and Margareta Kristenson
    Citation: Journal of Patient-Reported Outcomes 2020 4:50
  19. Patient-reported outcomes (PROs) refer to any report of the status of a patient’s health condition, health behavior, or experience with healthcare directly from the patient, without interpretation of the patie...

    Authors: Iori Sato, Mariko Sakka, Takafumi Soejima, Sachiko Kita and Kiyoko Kamibeppu
    Citation: Journal of Patient-Reported Outcomes 2020 4:49
  20. Reducing non-completion of quality-of-life assessment in clinical trials is an important challenge in obtaining accurate data and unbiased interpretation of patients’ quality-of-life for each regimen. We evalu...

    Authors: Iori Sato, Takafumi Soejima, Yasushi Ishida, Miho Maeda, Katsuyoshi Koh and Kiyoko Kamibeppu
    Citation: Journal of Patient-Reported Outcomes 2020 4:48
  21. Little research has focused on implementation of electronic Patient Reported Outcomes (e-PROs) for meaningful use in patient management in ‘real-world’ oncology practices. Our quality improvement collaborative...

    Authors: Doris Howell, Zeev Rosberger, Carole Mayer, Rosanna Faria, Marc Hamel, Anne Snider, Denise Bryant Lukosius, Nicole Montgomery, Mindaugas Mozuraitis and Madeline Li
    Citation: Journal of Patient-Reported Outcomes 2020 4:47
  22. The quality of life (QoL) of patients with lung cancer (LC) may be affected by disease-related limitations such as patients’ functioning, the severity of symptoms, financial problems resulting along with the s...

    Authors: Sunil Shrestha, Sudip Shrestha, Bhuvan KC, Binaya Sapkota, Anil Khadka, Saval Khanal and Michael Koller
    Citation: Journal of Patient-Reported Outcomes 2020 4:46
  23. Individuals with Down syndrome exhibit particular oro-facial characteristics that may increase their risk of oral health problems. However, there is little research on the oral health of children and adults wi...

    Authors: AlBandary H. AlJameel, Richard G. Watt, Georgios Tsakos and Blánaid Daly
    Citation: Journal of Patient-Reported Outcomes 2020 4:45
  24. Pulmonary Hypertension (PH) impacts negatively on patients’ health-related quality of life (HRQoL). The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) was the first PH-specific and validated instrum...

    Authors: Ricardo Amorim Corrêa, Monica Corso Pereira, Mariana Ferreira Bizzi, Rafael W. R. de Oliveira, Camila Farnese Rezende, Bruna Cristina Marabita Tavares de Oliveira, Alice Heaney, Stephen P. McKenna and Antonio Ribeiro-Oliveira Jr
    Citation: Journal of Patient-Reported Outcomes 2020 4:43
  25. Current US health policy discussions regarding physician burnout have largely been informed by studies employing the Maslach Burnout Inventory (MBI); yet, there is little in the literature focused on interpret...

    Authors: Keri J. S. Brady, Pengsheng Ni, R. Christopher Sheldrick, Mickey T. Trockel, Tait D. Shanafelt, Susannah G. Rowe, Jeffrey I. Schneider and Lewis E. Kazis
    Citation: Journal of Patient-Reported Outcomes 2020 4:42
  26. The 12-item International Hip Outcome Tool (iHOT12) is a patient-reported outcome (PRO) designed to evaluate quality of life. We assessed the psychometric properties of the Greek version (iHOT12-Gr) in hip ost...

    Authors: Sophia Stasi, Magdalini Stamou, George Papathanasiou, Paraskevi Frantzeskaki, Emmanouil Kanavas, George Evaggelou-Sossidis, Adamantios Gouskos, Andreas Palantzas, Kyriakos Poursanidis and George A. Macheras
    Citation: Journal of Patient-Reported Outcomes 2020 4:41
  27. Research on outcomes after ankle fusion focuses on basic activities of daily living, fusion rates, and gait parameters. Little has been reported on the patient’s perspective after surgery. The purpose of this ...

    Authors: Jessica M. Kohring, Jeffrey R. Houck, Irvin Oh, Adolf S. Flemister, John P. Ketz and Judith F. Baumhauer
    Citation: Journal of Patient-Reported Outcomes 2020 4:40
  28. Value-based healthcare models will require prioritization of the patient’s voice in their own care toward better outcomes. The Patient-Reported Outcomes Measurement Information System® (PROMIS) gives patients ...

    Authors: Ryan P. Jacobson, Daniel Kang and Jeff Houck
    Citation: Journal of Patient-Reported Outcomes 2020 4:39
  29. Fatigue following breast cancer is a well-known problem, with both high and persistent prevalence. Previous studies suffer from lack of repeated measurements, late recruitment and short periods of follow-up. T...

    Authors: Karin Biering, Morten Frydenberg, Helle Pappot and Niels Henrik Hjollund
    Citation: Journal of Patient-Reported Outcomes 2020 4:37
  30. 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
  31. 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
  32. 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
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
  44. 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
  45. 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
  46. 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
  47. 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

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