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  1. Practitioner and family experiences of pediatric re/habilitation can be inequitable. The Young Children’s Participation and Environment Measure (YC-PEM) is an evidence-based and promising electronic patient-re...

    Authors: Vivian C. Villegas, Dianna L. Bosak, Zurisadai Salgado, Michelle Phoenix, Natalie Parde, Rachel Teplicky and Mary A. Khetani
    Citation: Journal of Patient-Reported Outcomes 2023 7:87
  2. The guidelines for mechanical circulatory support of the International Society for Heart and Lung Transplantation do not recommend the routine replacement or repair of the mitral valve at the time point of lef...

    Authors: Kristin Klaeske, Constantin Schreiber, Sandra Eifert, Tillmann Dieterlen, Khalil Jawad, Diyar Saeed, Sandra Semmig-Könze, Anna Lassia Meyer, Michael Andrew Borger and Maja-Theresa Dieterlen
    Citation: Journal of Patient-Reported Outcomes 2023 7:86
  3. To further develop the Person-Centred Care instrument for outpatient care (PCCoc), evaluate its user-friendliness and content validity, and to explore its basic psychometric properties in various outpatient se...

    Authors: Fredrik Gasser, Sidona-Valentina Bala, Albert Westergren, Joakim Ekstrand and Peter Hagell
    Citation: Journal of Patient-Reported Outcomes 2023 7:85
  4. Dengue is the most prevalent arboviral infection causing an estimated 50–60 million cases of febrile illness globally per year, exacting considerable disease burden. Few instruments exist to assess the patient...

    Authors: Amy M. Jones, Todd L. Saretsky, Charlotte Panter, Jane R. Wells, Frances White, Verity Smith, Helen Kendal, Kevin Russell, Madelyn Ruggieri, Shawna R. Calhoun, Adam Gater, Justin O’Hagan, Kathryn B. Anderson, Valerie A. Paz-Soldan, Amy C. Morrison, Lisa Ware…
    Citation: Journal of Patient-Reported Outcomes 2023 7:84
  5. Post-thrombotic syndrome (PTS) is the most common complication of deep venous thrombosis (DVT). The index for the Clinical Assessment of Post-Thrombotic Syndrome in children (CAPTSure©) is a clinical tool for ...

    Authors: Marie-Claude Pelland-Marcotte, Angelika Stavrakoukas, Gina Wong, Raoul Santiago and Laura Avila
    Citation: Journal of Patient-Reported Outcomes 2023 7:83
  6. Spontaneous intracranial hypotension (SIH) is an underdiagnosed and debilitating condition caused by a spinal cerebrospinal fluid (CSF) leak. Although SIH can lead to substantial morbidity and disability, litt...

    Authors: Timothy J. Amrhein, Molly McFatrich, Kate Ehle, Michael D. Malinzak, Linda Gray, Peter G. Kranz, E. Hope Weant and Christina K. Zigler
    Citation: Journal of Patient-Reported Outcomes 2023 7:82
  7. Patient-reported outcome measures (PROMs) provide a measure of self-perceived health status or health-related quality of life. They have been used to support provider-patient decisions, healthcare delivery, an...

    Authors: David A Snowdon, Velandai Srikanth, Richard Beare, Kate E Noeske, Elizabeth Le, Bridget O’Bree and Nadine E Andrew
    Citation: Journal of Patient-Reported Outcomes 2023 7:81
  8. The Knee Injury and Osteoarthritis Outcomes Score (KOOS) is a free clinical tool commonly used to evaluate the symptoms and functional status of patients with knee injury. For people who speak Chinese, the Hon...

    Authors: Liying Yang, Jatuporn Suttiwong, Yanfen Fu and Komsak Sinsurin
    Citation: Journal of Patient-Reported Outcomes 2023 7:80
  9. Identifying the most relevant HRQOL domains for LBP from the perspective of individuals with lived experience with LBP is necessary to prioritize domains that will be most informative for evaluating the impact...

    Authors: O Eilayyan, A Gogovor, D Zidarov, N Mayo and S Ahmed
    Citation: Journal of Patient-Reported Outcomes 2023 7:79
  10. Goal Attainment Scaling (GAS) is an outcome measure that reflects the perspectives and experiences of patients, consistent with patient-centred care approaches and with the aims of patient-reported outcome mea...

    Authors: Paul Stolee, Sara Mallinson, Alison Kernoghan, Meaghan Brierley, Catherine Tong, Jacobi Elliott and Lama Abdallah
    Citation: Journal of Patient-Reported Outcomes 2023 7:78
  11. Longitudinal estimates of long COVID burden during Omicron remain limited. This study characterized long-term impacts of COVID-19 and booster vaccination on symptoms, Health-Related Quality of Life (HRQoL), an...

    Authors: Manuela Di Fusco, Xiaowu Sun, Mary M. Moran, Henriette Coetzer, Joann M. Zamparo, Mary B. Alvarez, Laura Puzniak, Ying P. Tabak and Joseph C. Cappelleri
    Citation: Journal of Patient-Reported Outcomes 2023 7:77
  12. Patient-reported outcome measures - PROMs - have been developed to provide an assessment of patients’ physical function, symptoms, and health-related quality of life. With patient-centered care becoming increa...

    Authors: Adriana N. König, Sebastian Himmler, Peter Buschner and Leonie Sundmacher
    Citation: Journal of Patient-Reported Outcomes 2023 7:76
  13. Fatigue has a detrimental impact on health-related quality of life and functioning in patients with Crohn’s disease (CD). We aimed to confirm the relevance and importance of fatigue, establish the content vali...

    Authors: Miguel Regueiro, Laure Delbecque, Theresa Hunter, Larissa Stassek, Gale Harding and James Lewis
    Citation: Journal of Patient-Reported Outcomes 2023 7:75
  14. Retinitis Pigmentosa (RP) and Leber Congenital Amaurosis (LCA) are rare inherited retinal degenerative disorders. The associated visual impairments have significant impacts on patients’ vision-dependent activi...

    Authors: Christine Kay, Isabelle Audo, Christel Naujoks, Claudio Spera, M. Dominik Fischer, Jane Green, Todd Durham, Nicola Williamson, Helena Bradley, Melissa Barclay, Joel Sims, Judit Banhazi and Francesco Patalano
    Citation: Journal of Patient-Reported Outcomes 2023 7:74
  15. Evaluating the criterion validity and responsiveness of the self-reported FitMáx©-questionnaire, Duke Activity Status Index (DASI) and Veterans Specific Activity Questionnaire (VSAQ) to monitor aerobic capacit...

    Authors: Anouk T.R. Weemaes, Renske Meijer, Milou Beelen, Martijn van Hooff, Matty P. Weijenberg, Antoine F. Lenssen, Lonneke V. van de Poll-Franse, Hans H.C.M. Savelberg and Goof Schep
    Citation: Journal of Patient-Reported Outcomes 2023 7:73
  16. Women with endometrial or ovarian cancer experience a variety of symptoms during chemotherapy. Patient-Reported outcomes (PROs) can provide insight into the symptoms they experience. A PRO tool tailored to thi...

    Authors: Mille Guldager Christiansen, Helle Pappot, Pernille Tine Jensen, Mansoor Raza Mirza, Mary Jarden and Karin Piil
    Citation: Journal of Patient-Reported Outcomes 2023 7:72
  17. Cancer survivors are at greater risk for poor health outcomes due to COVID-19. However, the pandemic's impact on patients’ health-related quality of life (HRQoL) is not well known. This study hypothesized that...

    Authors: Laura M. Perry, John D. Peipert, Sheetal M. Kircher, Jackelyn Cantoral, Frank J. Penedo and Sofia F. Garcia
    Citation: Journal of Patient-Reported Outcomes 2023 7:71
  18. Metachromatic leukodystrophy (MLD) is a rare lysosomal storage disease caused by deficient activity of arylsulfatase A (ASA). Treatment options for patients are limited; gene therapy based on haematopoietic st...

    Authors: Susan Martin, Nimanee Harris and Dorothy Romanus
    Citation: Journal of Patient-Reported Outcomes 2023 7:70
  19. Standardized measures for evaluating patients’ experiences with nonalcoholic steatohepatitis (NASH) and their perceived changes with treatment in clinical trials have been limited. To meet this need, a patient...

    Authors: James Twiss, Diane Whalley, Lynda Doward, Maria-Magdalena Balp, Clifford A. Brass, Donna Cryer, Arun Sanyal and Quentin M. Anstee
    Citation: Journal of Patient-Reported Outcomes 2023 7:69
  20. Congenital thrombotic thrombocytopenic purpura (cTTP) is an ultra-rare, life-threatening hereditary disorder that causes patients to experience significant morbidity and decreased health-related quality of lif...

    Authors: Abiola Oladapo, Diane Ito, Ana María Rodriguez, Stephanie Philpott, Robert Krupnick, Veleka Allen, Christopher Hibbard, Marie Scully and Bruce Ewenstein
    Citation: Journal of Patient-Reported Outcomes 2023 7:68
  21. This study characterized depression trajectories during the COVID pandemic and investigated how appraisal and changes in appraisal over time related to these depression trajectories.

    Authors: Carolyn E. Schwartz, Katrina Borowiec and Bruce D. Rapkin
    Citation: Journal of Patient-Reported Outcomes 2023 7:67
  22. 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 2023 7:66

    The original article was published in Journal of Patient-Reported Outcomes 2020 4:106

  23. Refractory chronic cough (RCC), a cough lasting longer than 8 weeks with an unexplained underlying etiology and unresponsive to conventional treatment, can have substantial effects on patients’ quality of life...

    Authors: Margarita de la Orden Abad, Claudia Haberland, Hayley Karn, Anne Skalicky and Asha Hareendran
    Citation: Journal of Patient-Reported Outcomes 2023 7:65
  24. Dry eye disease (DED), Meibomian gland dysfunction (MGD), and Sjögren’s syndrome dry eye disease (SS-DED) are eye dryness conditions that show significant overlap in various symptoms of ocular discomfort. The ...

    Authors: Brigitte Sloesen, Alyson Young, Katie Forde, Nicola Hodson, Sarah Bentley, Oonagh Walsh, Christel Naujoks, Paul O’Brien and Garima Sharma
    Citation: Journal of Patient-Reported Outcomes 2023 7:64
  25. Fatigue is the most common symptom associated with paroxysmal nocturnal hemoglobinuria (PNH). The objective of this analysis was to estimate values that would suggest a clinically important change (CIC) for th...

    Authors: David Cella, Peter Johansson, Yasutaka Ueda, Ioannis Tomazos, Philippe Gustovic, Alice Wang, Ami S. Patel and Hubert Schrezenmeier
    Citation: Journal of Patient-Reported Outcomes 2023 7:63
  26. With its health risks and extensive disruption to everyday life, the SARS-CoV-2 (COVID-19) pandemic has affected the lives of billions of people. People with chronic conditions are particularly susceptible to ...

    Authors: Caroline Trillingsgaard Mejdahl, Pernille Bjørnholt Nielsen, Lise Arnth Nielsen, Astrid Fyrstenborg Christensen and Berit Kjærside Nielsen
    Citation: Journal of Patient-Reported Outcomes 2023 7:62
  27. As disease-modifying therapies do not reverse the course of multiple sclerosis (MS), assessment of therapeutic success involves documenting patient-reported outcomes (PROs) concerning health-related quality of...

    Authors: Nupur Greene, Stéphane Quéré, Denise P. Bury, Flora Mazerolle, Manal M’Hari, Angély Loubert, Antoine Regnault and Keiko Higuchi
    Citation: Journal of Patient-Reported Outcomes 2023 7:61
  28. Living with autoimmune thyroid disease is a longstanding challenge and can seriously affect the quality of life. We aimed to adapt and validate the Hungarian version of the Thyroid-Related Patient-Reported Out...

    Authors: Adrien Rigó, Katalin Malkov, Alexandra Szabó, Virág Katalin Bognár and Róbert Urbán
    Citation: Journal of Patient-Reported Outcomes 2023 7:60
  29. The Bristol Impact of Hypermobility questionnaire (BIoH) is the first condition-specific patient reported outcome measure for people with hypermobility-related conditions. The BIoH original version is in Engli...

    Authors: Najla Alsiri, Meshal Alhadhoud, Asma Alhumaid and Shea Palmer
    Citation: Journal of Patient-Reported Outcomes 2023 7:59
  30. Falls prevention in hospital continues to be a research priority because of the poor health outcomes and financial burdens that can arise. Recently updated World Guidelines for Falls Prevention and Management ...

    Authors: Elissa Dabkowski, Karen Missen, Jhodie Duncan and Simon Cooper
    Citation: Journal of Patient-Reported Outcomes 2023 7:58
  31. Establishing the psychometric reliability and validity of new measures is an ongoing process. More work is needed in to confirm the clinical utility of the TBI-CareQOL measurement development system in both an...

    Authors: Noelle E. Carlozzi, Sung Won Choi, Zhenke Wu, Srijan Sen, Jonathan Troost, Angela K. Lyden, Jennifer A. Miner, Christopher Graves and Angelle M. Sander
    Citation: Journal of Patient-Reported Outcomes 2023 7:57
  32. The pediatric patient-reported outcomes version of the common terminology criteria for adverse event measure was developed and validated for use in pediatric cancer clinical trials to better capture the sympto...

    Authors: Kristin M. Schroeder, Tyler Rizzieri, Ryan R. Lion, Norbert Mtenga, Mwitasrobert Gisiri, Molly McFatrich and Bryce B. Reeve
    Citation: Journal of Patient-Reported Outcomes 2023 7:56
  33. The Hyperhidrosis Quality of Life Index (HidroQoL ©) is a well-developed and validated patient-reported outcome measure assessing the quality-of-life impacts in hyperhidrosis with 18 items. Our aim was to exte...

    Authors: Theresa Donhauser, Christian Apfelbacher, Gesina Kann, Clarissa Masur, Paul Kamudoni, Sam Salek, Christoph Abels and Michaela Gabes
    Citation: Journal of Patient-Reported Outcomes 2023 7:55
  34. Research shows that feeding back patient-reported outcome information to clinicians and/or patients could be associated with improved care processes and patient outcomes. Quantitative syntheses of intervention...

    Authors: Sheng-Chieh Lu, I. Porter, J. M. Valderas, C. J. Harrison and Chris Sidey-Gibbons
    Citation: Journal of Patient-Reported Outcomes 2023 7:54
  35. Authors: Magdalena Vanya, Maureen Watt, Saeid Shahraz, Charlotte E. Kosmas, Stephanie Rhoten, Sara Costa-Cabral, Joan Mendivil, Giovanna Devercelli and Karsten Weller
    Citation: Journal of Patient-Reported Outcomes 2023 7:53

    The original article was published in Journal of Patient-Reported Outcomes 2023 7:33

  36. Many large-scale population-based surveys, research studies, and clinical care allow for inclusion of proxy reporting as a strategy to collect outcomes when patients are unavailable or unable to provide reliab...

    Authors: Brittany Lapin, Matthew L. Cohen, Nadia Corsini, Alyssa Lanzi, Sarah C. Smith, Antonia V. Bennett, Nancy Mayo, Rebecca Mercieca-Bebber, Sandra A. Mitchell, Claudia Rutherford and Jessica Roydhouse
    Citation: Journal of Patient-Reported Outcomes 2023 7:52
  37. The Respiratory Infection Intensity and Impact Questionnaire (RiiQ™) is a patient-reported outcome measure designed to assess symptoms and impacts of respiratory syncytial virus (RSV) infection. This study eva...

    Authors: Richard H. Osborne, Lauren M. Nelson, Sheri Fehnel, Nicole Williams, Randall H. Bender, Ryan Ziemiecki, Efi Gymnopoulou, Els De Paepe, Yannick Vandendijck, Lindsey Norcross, Esther Heijnen, Gabriela Ispas, Christy Comeaux, Benoit Callendret, Eric K. H. Chan and Jane A. Scott
    Citation: Journal of Patient-Reported Outcomes 2023 7:51
  38. Patient Reported Outcomes (PROs) are an evidenced way of adding value to routine clinical care. As a source of unique information on the effect of a medical condition and its treatment from the patients’ persp...

    Authors: António Antunes, Ricardo Racha-Pacheco, Catarina Esteves, Ana Tavares, Josefina Mendez, Patrícia Pacheco and Duncan Short
    Citation: Journal of Patient-Reported Outcomes 2023 7:50
  39. The ability to communicate is a prerequisite for participation in today’s society. To measure participation in adults with communication disorders, the Communicative Participation Item Bank (CPIB) was develope...

    Authors: Nicole ter Wal, Lizet van Ewijk, Johanna M.A. Visser-Meily, Anna Volkmer, Ellen Gerrits and Caroline B. Terwee
    Citation: Journal of Patient-Reported Outcomes 2023 7:49
  40. Symptom expression in SARS-CoV-2 infection (COVID-19) may affect patients already symptomatic with cancer. Patient-reported outcomes (PROs) can describe symptom burden during the acute and postacute stages of ...

    Authors: Loretta A. Williams, Meagan S. Whisenant, Tito R. Mendoza, Angela E. Peek, Donna Malveaux, Donna K. Griffin, Darcy A. Ponce, Bruno Palma Granwehr, Ajay Sheshadri, Katherine A. Hutcheson, Sara M. Ali, Susan K. Peterson, John V. Heymach, Charles S. Cleeland and Ishwaria M. Subbiah
    Citation: Journal of Patient-Reported Outcomes 2023 7:48
  41. COVID-19 put older individuals at high risk for morbidity and mortality, isolation, reduced coping, and lower satisfaction with life. Many older adults experienced social isolation, fear, and anxiety. We hypot...

    Authors: Nasreen Lalani, Xu Dongjuan, Yun Cai and Greg W. Arling
    Citation: Journal of Patient-Reported Outcomes 2023 7:46
  42. The Symptoms of Infection with Coronavirus-19 (SIC) is a 30-item patient-reported outcome (PRO) measure scored by body system composites to assess signs/symptoms of coronavirus disease 2019 (COVID-19). In addi...

    Authors: Eric K.H. Chan, Valerie Williams, Carla Romano, Sheri Fehnel, Ashley F. Slagle, Jeffrey Stoddard, Jerald Sadoff, Margaret Mayorga, Sandy Lewis, Stuart Yarr, Jia Ma, Yan Liu, Eva G. Katz, Pauline McNulty, Ilse van Dromme and Kelly McQuarrie
    Citation: Journal of Patient-Reported Outcomes 2023 7:45
  43. There has been an increased significance on patient-reported outcomes in clinical settings. We aimed to evaluate the feasibility of administering patient-reported outcome measures by computerized adaptive test...

    Authors: Riyad Bin Rafiq, Susan Yount, Sara Jerousek, Elliot J. Roth, David Cella, Mark V. Albert and Allen W. Heinemann
    Citation: Journal of Patient-Reported Outcomes 2023 7:44
  44. Fear of Hypoglycemia (FoH) in people with diabetes has a significant impact on their quality of life, psychological well-being, and self-management of disease. There are a few questionnaires assessing FoH in p...

    Authors: Jingwen Liu, Jiat-Ling Poon, Jeoffrey Bispham, Magaly Perez-Nieves, Allyson Hughes, Katherine Chapman, Beth Mitchell, Korey Hood, Frank Snoek and Lawrence Fisher
    Citation: Journal of Patient-Reported Outcomes 2023 7:43
  45. Cancer and its treatment can have significant impacts on health status, quality of life and functioning of patients. Direct information from patients regarding these aspects can be collected via electronic pla...

    Authors: Amelia Payne, Ashley Horne, Neil Bayman, Fiona Blackhall, Layla Bostock, Clara Chan, Joanna Coote, Marie Eaton, Jacqueline Fenemore, Fabio Gomes, Emma Halkyard, Margaret Harris, Colin Lindsay, Delyth McEntee, Hilary Neal, Laura Pemberton…
    Citation: Journal of Patient-Reported Outcomes 2023 7:42
  46. The use of patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) provide health providers with valuable feedback on how to improve clinical care and patient outcomes. This pa...

    Authors: Anna-Leena Lohiniva, Sanna Isosomppi, Sini Pasanen and Jussi Sutinen
    Citation: Journal of Patient-Reported Outcomes 2023 7:41
  47. Previous research on concepts that are important to people living with early-stage Parkinson’s indicated that ‘functional’ slowness, fine motor skills, and subtle gait abnormalities are cardinal concepts that are...

    Authors: Thomas Morel, Sophie Cleanthous, John Andrejack, Roger A. Barker, Milton Biagioni, Geraldine Blavat, Bastiaan R. Bloem, Babak Boroojerdi, William Brooks, Paul Burns, Stefan Cano, Casey Gallagher, Lesley Gosden, Carroll Siu, Ashley F. Slagle, Natasha Ratcliffe…
    Citation: Journal of Patient-Reported Outcomes 2023 7:40
  48. Sleep disturbance, pain, and fatigue are key symptoms/impacts of axial spondyloarthritis (axSpA). Three customized Patient-Reported Outcomes Measurement Information System (PROMIS®) Short Forms (Sleep Disturbance...

    Authors: Amy Findley, Jessica M. Middlehurst, Chloe A. Howse, Molly J. Clifford, William Neill, Sophi Tatlock, Wen-Hung Chen, Marguerite G. Bracher and Dharm S. Patel
    Citation: Journal of Patient-Reported Outcomes 2023 7:39
  49. Patients with Dupuytren disease experience various activity limitations. Treatment aims to reduce finger joint contractures to improve hand function and activity performance. For assessing improvement differen...

    Authors: Anna Lauritzson, David Eckerdal and Isam Atroshi
    Citation: Journal of Patient-Reported Outcomes 2023 7:38

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