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  1. This paper reports the duration of moderate and severe exacerbations in patients with house dust mite induced allergic asthma and the impact on patients’ quality of life.

    Authors: Andrew Briggs, Shuaib Nasser, Eva Hammerby, Sarah Buchs and J. Christian Virchow
    Citation: Journal of Patient-Reported Outcomes 2021 5:6
  2. As life expectancy of people with Down syndrome (DS) increases, so does the risk of Alzheimer’s disease (AD). Identifying symptoms and tracking disease progression is especially challenging whenever levels of ...

    Authors: Kari Knox, Justin Stanley, James A. Hendrix, Hampus Hillerstrom, Taylor Dunn, Jillian Achenbach, Brian A. Chicoine, Florence Lai, Ira Lott, Sanja Stanojevic, Susan E. Howlett and Kenneth Rockwood
    Citation: Journal of Patient-Reported Outcomes 2021 5:5
  3. In oncology practice, eliciting the patient’s perspective on their quality of life (QOL) adds important information and value to their treatment and care. The European Organization for Research and Treatment o...

    Authors: Jasmine Davda, Hillary Kibet, Emmah Achieng, Lawrence Atundo and Truphena Komen
    Citation: Journal of Patient-Reported Outcomes 2021 5:4
  4. Hereditary transthyretin (hATTR) amyloidosis is a rare, systemic, progressive, and life-threatening disease in which transthyretin proteins misfold and aggregate as insoluble amyloid deposits, disrupting nervo...

    Authors: Andrew Lovley, Kimberly Raymond, Spencer D. Guthrie, Michael Pollock, Vaishali Sanchorawala and Michelle K. White
    Citation: Journal of Patient-Reported Outcomes 2021 5:3
  5. Gains in cancer detection and treatment have meant that more patients are now living with both cancer and other chronic health conditions, which may become burdensome. We used the Patient Experience with Treat...

    Authors: R. T. Anderson, D. T. Eton, F. T. Camacho, E. M. Kennedy, C. M. Brenin, P. B. DeGuzman, K. F. Carter, T. Guterbock, K. J. Ruddy and W. F. Cohn
    Citation: Journal of Patient-Reported Outcomes 2021 5:2
  6. Patients suffering from exsudative retinal diseases may experience severe central vision loss and this might have impact on their daily activities and quality of life. To measure the disabilities these patient...

    Authors: T. P. Rausch – Koster, A. J. van der Ham, C. B. Terwee, F. D. Verbraak, G. H. M. B. van Rens and R. M. A. van Nispen
    Citation: Journal of Patient-Reported Outcomes 2021 5:1
  7. An amendment to this paper has been published and can be accessed via the original article.

    Authors: Carla Dias-Barbosa, Rodolfo Matos, Margaret Vernon, Colleen E. Carney, Andrew Krystal and Jorge Puelles
    Citation: Journal of Patient-Reported Outcomes 2020 4:107

    The original article was published in Journal of Patient-Reported Outcomes 2020 4:100

  8. Researchers and clinicians studying symptoms experienced by people with cancer must choose from various scales. It would be useful to know how the scores on one measure translate to another.

    Authors: Minji K. Lee, Benjamin D. Schalet, David Cella, Kathleen J. Yost, Amylou C. Dueck, Paul J. Novotny and Jeff A. Sloan
    Citation: Journal of Patient-Reported Outcomes 2020 4:106

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:20

  9. Caries Impacts and Experiences Questionnaire for Children (CARIES-QC) is a child-centred caries-specific quality of life measure. This study aimed to select, and validate with children, a classification system...

    Authors: Helen J. Rogers, Fiona Gilchrist, Zoe Marshman, Helen D. Rodd and Donna Rowen
    Citation: Journal of Patient-Reported Outcomes 2020 4:105
  10. The Diabetes Injection Device Preference Questionnaire (DID-PQ) was designed to assess patient preference between two non-insulin injection devices. In a recent crossover study, people with type 2 diabetes (T2...

    Authors: Kristina S. Boye, Louis S. Matza, Brooke M. Currie and Karin S. Coyne
    Citation: Journal of Patient-Reported Outcomes 2020 4:104
  11. To develop a predictive risk model (PRM) for patient-reported anxiety after treatment completion for early stage breast cancer suitable for use in practice and underpinned by advances in data science and risk ...

    Authors: Jenny Harris, Edward Purssell, Victoria Cornelius, Emma Ream, Anne Jones and Jo Armes
    Citation: Journal of Patient-Reported Outcomes 2020 4:103
  12. Hypertrophic cardiomyopathy (HCM) is a primary myocardial disorder defined by left ventricular hypertrophy that cannot be explained by another cardiac or systemic disease. There is a general lack of knowledge ...

    Authors: Erica Zaiser, Amy J. Sehnert, Ashley Duenas, Sara Saberi, Ella Brookes and Matthew Reaney
    Citation: Journal of Patient-Reported Outcomes 2020 4:102
  13. 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
  14. 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

    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2020 4:107

  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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
  32. 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
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
  44. 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
  45. 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
  46. 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
  47. 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
  48. 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
  49. 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

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