Skip to main content

Articles

Page 1 of 7

  1. The study tests the effects of data collection modes on patient responses associated with the multi-item measures such as Patient-Reported Outcomes Measurement System (PROMIS®), and single-item measures such as P...

    Authors: Minji K. Lee, Timothy J. Beebe, Kathleen J. Yost, David T. Eton, Paul J. Novotny, Amylou C. Dueck, Marlene Frost and Jeff A. Sloan

    Citation: Journal of Patient-Reported Outcomes 2021 5:95

    Content type: Research

    Published on:

  2. Digital patient reported outcomes are used increasingly in daily care and treatment of inflammatory bowel disease. Their purpose includes increased focus on patient wellbeing, reduction in avoidable follow-up ...

    Authors: Amalie Søgaard Nielsen, Charlotte W. Appel, Birgit Furstrand Larsen, Lars Kayser and Lisa Hanna

    Citation: Journal of Patient-Reported Outcomes 2021 5:92

    Content type: Research

    Published on:

  3. Patient reported outcomes (PROs) have been associated with improved symptom management and quality of life in patients with cancer. However, the implementation of PROs in an academic clinical practice has not ...

    Authors: Olga Generalova, Mohana Roy, Evan Hall, Sumit A. Shah, Kristen Cunanan, Touran Fardeen, Brianna Velazquez, Gilbert Chu, Bianca Bruzzone, Anna Cabot, George A. Fisher, Sandy Srinivas, Alice C. Fan, Sigurdis Haraldsdottir, Heather A. Wakelee, Joel W. Neal…

    Citation: Journal of Patient-Reported Outcomes 2021 5:91

    Content type: Short report

    Published on:

  4. Clinical and patient-reported outcomes are positively affected when efforts to increase patient understanding of underlying diseases and foster patient participation are part of care pathways. The prevalence o...

    Authors: Andy McKay, Carlos Pantoja, Richard Hall, Sarah Matthews, Phil Spalding and Rajarshi Banerjee

    Citation: Journal of Patient-Reported Outcomes 2021 5:89

    Content type: Research

    Published on:

  5. The Patient Reported Outcome Measurement Information System profile instruments include “high information” items drawn from large item banks following the application of modern psychometric criteria. The short...

    Authors: Andrew M. Garratt, Joël Coste, Alexandra Rouquette and José M. Valderas

    Citation: Journal of Patient-Reported Outcomes 2021 5:86

    Content type: Research

    Published on:

  6. Pain coping strategies are important in the chronicity of low back pain and the associated disability. However, their exact influence is unknown in many African contexts such as rural Nigeria due to lack of ou...

    Authors: Chinonso Nwamaka Igwesi-Chidobe, Isaac Olubunmi Sorinola and Emma Louise Godfrey

    Citation: Journal of Patient-Reported Outcomes 2021 5:85

    Content type: Research

    Published on:

  7. Long-acting somatostatin analogs (LA SSAs) are approved and recommended for the treatment of patients with advanced neuroendocrine tumors (NETs). Given the long duration of therapy and differences in administr...

    Authors: Christina Darden, Mark Price, David Ray, Grace Goldstein, Diana Goss, Lee Bennett, Diana Garbinsky and Ramya Thota

    Citation: Journal of Patient-Reported Outcomes 2021 5:82

    Content type: Research

    Published on:

  8. Although evidence-based guidelines for physical therapy for patients with chronic low back pain (cLBP) are available, selecting patient-reported outcome measures to capture complexity of health status and qual...

    Authors: Sang S. Pak, Matthew J. Miller and Victor A. Cheuy

    Citation: Journal of Patient-Reported Outcomes 2021 5:81

    Content type: Research

    Published on:

  9. This study is part of the Swedish initiative for the establishment of standardized, modern patient-reported measures for national use in Swedish healthcare. The goal was to translate and culturally adapt eight...

    Authors: Ida Blomqvist, John Eric Chaplin, Evalill Nilsson, Eva Henje and Inga Dennhag

    Citation: Journal of Patient-Reported Outcomes 2021 5:80

    Content type: Short report

    Published on:

  10. This study translated and validated the Urdu version of the European Organization for Research and Treatment of Cancer Quality of Life (QoL) Questionnaire (EORTC QLQ-C30) and Brain Module (QLQ-BN20) amongst pa...

    Authors: Nida Zahid, Russell Seth Martins, Wajeeha Zahid, Wardah Khalid, Iqbal Azam, Shireen Shehzad Bhamani, Nargis Asad, Khabir Ahmad, Adnan Abdul Jabbar, Muhammad Shahzad Shamim, Rashid Jooma Khan, Gohar Javed, Ehsan Bari and Syed Ather Enam

    Citation: Journal of Patient-Reported Outcomes 2021 5:79

    Content type: Research

    Published on:

  11. To determine the feasibility of eliciting utilities with a standard gamble self-completion questionnaire that uses a single-item approach in melanoma patients.

    Authors: Christine Blome, Katharina C. Kähler, Tobias Wagner, Axel Hauschild and Matthias Augustin

    Citation: Journal of Patient-Reported Outcomes 2021 5:78

    Content type: Short report

    Published on:

  12. Visual impairment is an important cause of disability in children. There is a lack of information on rehabilitation needs and low vision support services for children with visual impairment in Nepal. This is a...

    Authors: Srijana Adhikari, Ellen Bernadette Maria Elsman, Ruth Marie Antoinette van Nispen, Fleur van Rens, Radhika Upreti Oli, Suman S. Thapa and Gerardus Hermanus Maria Bartholomeus van Rens

    Citation: Journal of Patient-Reported Outcomes 2021 5:77

    Content type: Research

    Published on:

  13. Patient-reported outcomes (PROs) can be used to monitor patients during treatment. Healthcare provider preferences for individualized vs. standardized PROs have been understudied.

    Authors: Salene M. W. Jones, Aliana Gaffney and Joseph M. Unger

    Citation: Journal of Patient-Reported Outcomes 2021 5:76

    Content type: Research

    Published on:

  14. Duchenne muscular dystrophy is a rare genetic neuromuscular disorder, which can result in early death due to disease progression. Ataluren is indicated for the treatment of nonsense mutation Duchenne muscular ...

    Authors: Kate Williams, Ian Davidson, Mark Rance, Axel Boehnke, Katharina Buesch and Sarah Acaster

    Citation: Journal of Patient-Reported Outcomes 2021 5:75

    Content type: Research

    Published on:

  15. Familial chylomicronemia syndrome (FCS), a rare genetic disorder characterized by high levels of circulating triglycerides, negatively impacts multiple organs, including the liver and pancreas.

    Authors: David Davidson, Christina Slota, Montserrat Vera-Llonch, T. Michelle Brown, Andrew Hsieh and Sheri Fehnel

    Citation: Journal of Patient-Reported Outcomes 2021 5:72

    Content type: Research

    Published on:

  16. Duchenne muscular dystrophy is a rare genetic neuromuscular disorder, which can result in early death due to disease progression. Ataluren is indicated for the treatment of nonsense mutation Duchenne muscular ...

    Authors: Kate Williams, Ian Davidson, Mark Rance, Katharina Buesch and Sarah Acaster

    Citation: Journal of Patient-Reported Outcomes 2021 5:71

    Content type: Research

    Published on:

  17. Hypoparathyroidism (HP) is a rare endocrine disorder characterized by absent or inappropriately low levels of circulating parathyroid hormone with associated significant physical and cognitive symptoms. This s...

    Authors: Meryl Brod, Lori McLeod, Denka Markova, Jill Gianettoni, Sanchita Mourya, Zhengning Lin, Aimee Shu and Alden Smith

    Citation: Journal of Patient-Reported Outcomes 2021 5:70

    Content type: Research

    Published on:

  18. Despite the development of new biologic therapies, methotrexate (MTX) remains the preferred initial disease-modifying anti-rheumatic drug to treat rheumatoid arthritis (RA). Adherence to disease-modifying anti...

    Authors: Jeffrey R. Curtis, Jan Michael Nebesky, Elodie de Bock, Christine de la Loge, Benoit Arnould, Robert Davey, Jenny Devenport and Attila Pethö-Schramm

    Citation: Journal of Patient-Reported Outcomes 2021 5:69

    Content type: Research

    Published on:

  19. Trauma is a global public health challenge. Measuring post-discharge socioeconomic and quality-of-life outcomes can help better understand and reduce the consequences of trauma.

    Authors: Siddarth Daniels David, Nobhojit Roy, Harris Solomon, Cecilia Stålsby Lundborg and Martin Gerdin Wärnberg

    Citation: Journal of Patient-Reported Outcomes 2021 5:68

    Content type: Review

    Published on:

  20. Low back pain (LBP) is a common musculoskeletal problem, associated with disability and high societal costs. The Oswestry Disability Index (ODI) is among the most commonly used patient reported outcome measure...

    Authors: Kandel Binaya, Thapa Kajal, Acharya S. Ranjeeta and Nepal Govinda

    Citation: Journal of Patient-Reported Outcomes 2021 5:67

    Content type: Research

    Published on:

  21. This study aims to evaluate data quality, scaling properties, and reliability of the Swedish RAND-36 in a general population sample and to present reference data for the Swedish population.

    Authors: Emma Ohlsson-Nevo, Ayako Hiyoshi, Paulina Norén, Margareta Möller and Jan Karlsson

    Citation: Journal of Patient-Reported Outcomes 2021 5:66

    Content type: Research

    Published on:

  22. A novel treatment has been developed for erythropoietic protoporphyria (EPP) (a rare condition that leaves patients highly sensitive to light). To fully understand the burden of EPP and the benefit of treatmen...

    Authors: G. Biolcati, S. Hanneken, E. I. Minder, N. J. Neumann, J. H. P. Wilson, P. J. Wolgen, D. J. Wright and A. J. Lloyd

    Citation: Journal of Patient-Reported Outcomes 2021 5:65

    Content type: Research

    Published on:

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:73

  23. Contrary to common usage in the health sciences, the term “valid” refers not to the properties of a measurement instrument but to the extent to which data-derived inferences are appropriate, meaningful, and us...

    Authors: Melanie Hawkins, Gerald R. Elsworth, Sandra Nolte and Richard H. Osborne

    Citation: Journal of Patient-Reported Outcomes 2021 5:64

    Content type: Research

    Published on:

  24. Sickle Cell Disease (SCD) is a genetic progressive vascular disease that impacts patients overall health and quality of life. Sickle-cell pain crises (SCPCs) are a hallmark clinical presentation of SCD and hav...

    Authors: Michelle K. White, Cory Saucier, Miranda Bailey, Denise D’Alessio, April Foster, Danielle St. Pierre and Kimberly Raymond

    Citation: Journal of Patient-Reported Outcomes 2021 5:63

    Content type: Research

    Published on:

  25. There has been a growing emphasis on health-related quality of life (HRQoL) as an important outcome in rare disease drug development, although its assessment may be useful outside the drug development context,...

    Authors: William R. Lenderking, Milena Anatchkova, Robin Pokrzywinski, Anne Skalicky, Mona L. Martin and Heather Gelhorn

    Citation: Journal of Patient-Reported Outcomes 2021 5:61

    Content type: Commentary

    Published on:

  26. Physical functioning and fatigue are key patient concerns in myelodysplastic syndromes (MDS), chronic myelomonocytic leukemia (CMML), and acute myeloid leukemia (AML). The objective of this research was to gen...

    Authors: Antoine Regnault, Farrah Pompilus, Anna Ciesluk, Flora Mazerolle, Rafael Bejar, Robert J. Fram, Douglas V. Faller, Patrick Marquis and Jill A. Bell

    Citation: Journal of Patient-Reported Outcomes 2021 5:60

    Content type: Research

    Published on:

  27. The Satisfaction with Life Scale (SWLS) is a widely used measure of subjective well-being. Recent evidence indicates the fifth item of the scale reduces the reliability of the scale and is inappropriate for us...

    Authors: Alyssa M. Bamer, Kara McMullen, Anne Deutsch, Mitch Sevigny, Tracy Mroz, Shelly A. Wiechman, Jeffrey C. Schneider and Dagmar Amtmann

    Citation: Journal of Patient-Reported Outcomes 2021 5:59

    Content type: Short report

    Published on:

  28. Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to i...

    Authors: Åsa Kettis, Hanna Fagerlind, Jan-Erik Frödin, Bengt Glimelius and Lena Ring

    Citation: Journal of Patient-Reported Outcomes 2021 5:58

    Content type: Research

    Published on:

  29. The Rapkin and Schwartz appraisal theory and measure provided a path toward documenting response-shift effects and describing individual differences in ways of thinking about quality of life (QOL) that disting...

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

    Citation: Journal of Patient-Reported Outcomes 2021 5:57

    Content type: Research

    Published on:

  30. The Singapore Caregiver Quality of Life Scale – Dementia (SCQOLS-D), developed based on the Singapore Caregiver Quality of Life Scale (SCQOLS), comprises 5 domains and 63 items. It has been shown to be a valid...

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

    Citation: Journal of Patient-Reported Outcomes 2021 5:56

    Content type: Research

    Published on:

  31. To reduce the burden of completing Patient-Reported Outcome Measures (PROMs), PROMIS® Computerized Adaptive Tests (CATs) are being implemented in pediatric clinical practice. We aimed to develop recommendation...

    Authors: Maud M. van Muilekom, Michiel A. J. Luijten, Hedy A. van Oers, Caroline B. Terwee, Raphaële R. L. van Litsenburg, Leo D. Roorda, Martha A. Grootenhuis and Lotte Haverman

    Citation: Journal of Patient-Reported Outcomes 2021 5:55

    Content type: Research

    Published on:

  32. Graves’ disease is the most common cause of hyperthyroidism. It results in accelerated tissue metabolism with multi-organ involvement ranging from cardiovascular to neuropsychological function. This results in...

    Authors: Huiling Liew, Torquil Watt, Luo Nan, Alvin W. K. Tan, Yiong Huak Chan, Daniel Ek Kwang Chew and Rinkoo Dalan

    Citation: Journal of Patient-Reported Outcomes 2021 5:54

    Content type: Research

    Published on:

  33. Research has indicated proxies overestimate symptoms on patients’ behalves, however it is unclear whether patients and proxies agree on meaningful change across domains over time. The objective of this study i...

    Authors: Brittany R. Lapin, Nicolas R. Thompson, Andrew Schuster and Irene L. Katzan

    Citation: Journal of Patient-Reported Outcomes 2021 5:53

    Content type: Short report

    Published on:

  34. Patients with rheumatoid arthritis (RA) commonly experience pain despite the availability of disease-modifying treatments. Sleep disturbances are frequently reported in RA, with pain often a contributing facto...

    Authors: Brandon Becker, Kimberly Raymond, Carol Hawkes, April Mitchell Foster, Andrew Lovley, Cory Saucier, Avery A. Rizio, Jakob Bue Bjorner and Mark Kosinski

    Citation: Journal of Patient-Reported Outcomes 2021 5:52

    Content type: Research

    Published on:

  35. Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare form of pulmonary hypertension caused by blood clots and scar tissue in the blood vessels of the lungs. Health-related quality of life is often s...

    Authors: Brooke Currie, Evan Davies, Amélie Beaudet, Larissa Stassek and Leah Kleinman

    Citation: Journal of Patient-Reported Outcomes 2021 5:51

    Content type: Research

    Published on:

  36. The objectives were: 1) to explore the discordance between the Patient Global Health Assessment (PtGA) scores, the Physician Global Health Assessment (PhGA) scores, and Pain scores; and 2) to explore whether t...

    Authors: Rebecca Trachtman, Rula Issa, Stephanie Pan, Karen M. Wilson, Daniel J. Lovell and Karen B. Onel

    Citation: Journal of Patient-Reported Outcomes 2021 5:50

    Content type: Short report

    Published on:

  37. Crohn’s disease (CD) is a chronic inflammatory condition of the gastrointestinal tract that affects people across the age spectrum but often starts in childhood or early adulthood. Despite this, almost all pub...

    Authors: Louise Newton, Laure Delbecque, Ufuk Coşkun, Tara Symonds, Jennifer Clegg and Theresa Hunter

    Citation: Journal of Patient-Reported Outcomes 2021 5:49

    Content type: Research

    Published on:

  38. The COVID-19 pandemic has led to a deep reorganization of hospital services including inflammatory bowel disease (IBD) units. In this situation, conversion of in-person routine follow-up visits into phone cons...

    Authors: Sergio Pinto, Erica Loddo, Salvatore Paba, Agnese Favale, Fabio Chicco, Sara Onali, Paolo Usai and Massimo Claudio Fantini

    Citation: Journal of Patient-Reported Outcomes 2021 5:48

    Content type: Research

    Published on:

  39. A new technology in cancer treatment, the MR-linac, provides online magnetic resonance-guided radiotherapy (MRgRT) that combines real-time visualization of the tumor and surrounding tissue with radiation thera...

    Authors: P. K. Møller, H. Pappot, U. Bernchou, T. Schytte and K. B. Dieperink

    Citation: Journal of Patient-Reported Outcomes 2021 5:47

    Content type: Research

    Published on:

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:62

  40. The purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research.

    Authors: Neela K. Patel, Sara S. Masoud, Kylie Meyer, Angelica V. Davila, Sheran Rivette, Ashlie A. Glassner, Deborah James and Carole L. White

    Citation: Journal of Patient-Reported Outcomes 2021 5:46

    Content type: Research

    Published on:

  41. This study was conducted to evaluate content validity of the IntraVenous and SubCutaneous Treatment Administration Satisfaction Questionnaires (TASQ-IV and TASQ-SC), for use in a clinical trial population of p...

    Authors: Helen Doll, Ufuk Coşkun, Chris Hartford and Ioannis Tomazos

    Citation: Journal of Patient-Reported Outcomes 2021 5:45

    Content type: Review

    Published on:

  42. Head and neck cancers (HNC) are one of the most traumatic forms of cancer because they affect essential aspects of life such as speech, swallowing, eating and disfigurement. HNCs are common in India, with over...

    Authors: Chindhu Shunmugasundaram, Haryana M. Dhillon, Phyllis N. Butow, Puma Sundaresan, Mahati Chittem, Niveditha Akula, Surendran Veeraiah and Claudia Rutherford

    Citation: Journal of Patient-Reported Outcomes 2021 5:44

    Content type: Research

    Published on:

  43. Disparities in US physician burnout rates across age, gender, and specialty groups as measured by the Maslach Burnout Inventory-Human Services Survey for Medical Personnel (MBI) are well documented. We evaluat...

    Authors: Keri J. S. Brady, R. Christopher Sheldrick, Pengsheng Ni, Mickey T. Trockel, Tait D. Shanafelt, Susannah G. Rowe and Lewis E. Kazis

    Citation: Journal of Patient-Reported Outcomes 2021 5:43

    Content type: Research

    Published on:

  44. Citation: Journal of Patient-Reported Outcomes 2021 5:42

    Content type: Correction

    Published on:

    The original article was published in Journal of Patient-Reported Outcomes 2021 5:37

  45. While the Patient-Reported Outcomes Measurement Information System (PROMIS) is mainly designed for computer adaptive testing, its static short forms (SF) are used when a paper-pencil format is preferred or ite...

    Authors: Anika Stephan, Vincent A. Stadelmann, Michael Leunig and Franco M. Impellizzeri

    Citation: Journal of Patient-Reported Outcomes 2021 5:41

    Content type: Short report

    Published on:

  46. The 12-item Medical Outcomes Study Sleep Scale (MOS Sleep Scale) has been used to capture patient-reported sleep problems in hundreds of studies. A revised version of the MOS Sleep Scale (MOS Sleep-R) was deve...

    Authors: Aaron Yarlas, Michelle K. White, Danielle G. St. Pierre and Jakob B. Bjorner

    Citation: Journal of Patient-Reported Outcomes 2021 5:40

    Content type: Research

    Published on:

Annual Journal Metrics