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  1. Childhood obesity can affect physical as well as psychosocial wellbeing. Therefore, childhood obesity care aims to improve all dimensions of health related quality of life (HRQoL). HRQoL can be measured with t...

    Authors: Minke M. A. Eilander, Marieke M. A. van Mil, Leandra W. Koetsier, Jacob C. Seidell and Jutka Halberstadt
    Citation: Journal of Patient-Reported Outcomes 2021 5:106
  2. The Patient-Reported Outcomes Measurement Information System (PROMIS®) aims to provide self-reported item banks for several dimensions of physical, mental and social health. Here we investigate the psychometri...

    Authors: Frida Carlberg Rindestig, Marie Wiberg, John Eric Chaplin, Eva Henje and Inga Dennhag
    Citation: Journal of Patient-Reported Outcomes 2021 5:105
  3. Rehabilitation is a person-centred approach that optimizes functioning to reduce impairments in individuals with illness, injury or disability. Patient-reported outcome measures (PROMs) have a role in rehabili...

    Authors: Katie Churchill, Lisa Warner, Eileen Keogh and Fatima Al Sayah
    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):103

    This article is part of a Supplement: Volume 5 Supplement 2

  4. Many healthcare systems around the world have been increasingly using patient-reported outcome measures (PROMs) in routine outcome measurement to enhance patient-centered care and incorporate the patient’s per...

    Authors: Fatima Al Sayah, Xuejing Jin and Jeffrey A. Johnson
    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):99

    This article is part of a Supplement: Volume 5 Supplement 2

  5. Cancer patients experience numerous distressing symptoms and concerns across the course of their illness, which negatively influence their quality of life. Regardless of cancer type, unmanaged symptoms can lea...

    Authors: Linda Watson, Andrea Delure, Siwei Qi, Claire Link, Lindsi Chmielewski, Éclair Photitai and Louise Smith
    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):97

    This article is part of a Supplement: Volume 5 Supplement 2

  6. PROMs are essential to delivering patient-centred health care, and when applied routinely they can enhance communication between patients and providers, inform decisions for value-based health system improveme...

    Authors: Michael Terner, Krista Louie, Candy Chow and Greg Webster
    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):94

    This article is part of a Supplement: Volume 5 Supplement 2

  7. Kidney failure requiring dialysis is associated with high symptom burden and low health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) are standardized instruments that capture patie...

    Authors: Sara N. Davison, Scott Klarenbach, Braden Manns, Kara Schnick-Makaroff, Robert Buzinski, Bonnie Corradetti, Hilary Short and Jeffrey A. Johnson
    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):93

    This article is part of a Supplement: Volume 5 Supplement 2

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:115

  8. PROMs are part of routine measurement for hip and knee replacement in Alberta, Canada. We provide an overview of how PROMs are implemented in routine care, and how we use PROMs data for decision-making at diff...

    Authors: Deborah A. Marshall, Xuejing Jin, Lindsay B. Pittman and Christopher J. Smith
    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):87

    This article is part of a Supplement: Volume 5 Supplement 2

  9. PROMs use in primary care has expanded from simply describing patient populations to contributing to decision-making, in response to the increasingly complex, ever-changing healthcare environment. In Alberta, ...

    Authors: Krista Brower, Margo Schmitt-Boshnick, Michel Haener, Shea Wilks and Allison Soprovich
    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):84

    This article is part of a Supplement: Volume 5 Supplement 2

  10. The regular use of patient-reported measures (PRMs) has been associated with greater patient satisfaction and outcomes. In this article, we will review the Calgary Comprehensive Epilepsy Program's successful e...

    Authors: Guillermo Delgado-García, Samuel Wiebe and Colin B. Josephson
    Citation: Journal of Patient-Reported Outcomes 2021 5(Suppl 2):83

    This article is part of a Supplement: Volume 5 Supplement 2

  11. Symptom constructs included in the Evaluating Respiratory Symptoms in Chronic Obstructive Pulmonary Disease (E-RS®: COPD) tool may be relevant to patients with asthma. The purpose of this study was to evaluate...

    Authors: Maggie Tabberer, Robyn von Maltzahn, Elizabeth D. Bacci, Hayley Karn, Ray Hsieh, Timothy A. Howell, Zelie Bailes, Andrew Fowler, Laurie Lee and Lindsey T. Murray
    Citation: Journal of Patient-Reported Outcomes 2021 5:104
  12. Patient-reported outcome measures (PROs) used to measure symptoms of patients with paroxysmal nocturnal hemoglobinuria (PNH) in trials do not measure PNH symptoms comprehensively and do not assess daily fluctu...

    Authors: R. Paola Daly, Jessica J. Jalbert, Shannon Keith, Tara Symonds and Jamile Shammo
    Citation: Journal of Patient-Reported Outcomes 2021 5:102
  13. Timely detection of chemotherapy-induced peripheral neuropathy (CIPN) is critical to effectively tailor chemotherapy dose levels and offer supportive care. The purpose of this secondary analysis was to determi...

    Authors: Robert Knoerl, Emanuele Mazzola, Sandra A. Mitchell, Fangxin Hong, Elahe Salehi, Nadine McCleary, Jennifer A. Ligibel, Kaitlen Reyes and Donna L. Berry
    Citation: Journal of Patient-Reported Outcomes 2021 5:101
  14. For the treatment of female sexual dysfunction, the most relevant outcome measures are patient-reported treatment effects and changes in symptoms, underscoring the need for reliable, validated patient-reported...

    Authors: Leonard R. Derogatis, Dennis A. Revicki, Raymond C. Rosen, Robert Jordan, Johna Lucas and Carl Spana
    Citation: Journal of Patient-Reported Outcomes 2021 5:100
  15. The European Organisation for Research and Treatment of Cancer (EORTC) quality of life questionnaire for non-muscle invasive bladder cancer (QLQ-NMIBC24) has been available and applied for some years now, but ...

    Authors: Theodora M. Ripping, Ellen Westhoff, Neil K. Aaronson, Mieke Van Hemelrijck, Elke Rammant, J. Alfred Witjes, Lambertus. A. Kiemeney, Katja K. H. Aben and Alina Vrieling
    Citation: Journal of Patient-Reported Outcomes 2021 5:96
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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
  32. 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
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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

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

  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
  44. 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

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