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Journal of Patient-Reported Outcomes
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  1. Policies to support people living with dementia increasingly focus on strengths-based approaches, highlighting the importance of building resilience. This research responds to the lack of a suitable resilience...

    Authors: Jennifer Rhiannon Roberts, Catherine Anne MacLeod, Zoe Hoare, Mary Pat Sullivan, Emilie Brotherhood, Joshua Stott and Gill Windle
    Citation: Journal of Patient-Reported Outcomes 2023 7:96
    Content type: Research Published on:

  2. Classic Galactosemia (CG) is a rare, autosomal recessive condition. Newborn screening and a timely galactose-restricted diet can resolve acute symptoms and decrease fatalities, but significant chronic, progres...

    Authors: Jason A. Randall, Carolyn Sutter, Lydia Raither, Stella Wang, Evan Bailey, Riccardo Perfetti, Shoshana Shendelman and Claire Burbridge
    Citation: Journal of Patient-Reported Outcomes 2023 7:95
    Content type: Research Published on:

  3. Multimorbidity is a burden for the individual and to the healthcare sector worldwide, leading to a rising number of intervention studies towards this patient group. To measure a possible effect of such interve...

    Authors: Kristine Bissenbakker, Volkert Siersma, Alexandra Brandt Ryborg Jønsson, Anne Møller, Karl Bang Christensen and John Brandt Brodersen
    Citation: Journal of Patient-Reported Outcomes 2023 7:94
    Content type: Research Published on:

  4. The health-related quality of life (HRQoL) among long-term Adolescent and Young Adult Cancer Survivors (AYACS) and an age- and sex-matched normative population was examined. Although the HRQoL of AYACS was wor...

    Authors: Carla Vlooswijk, Silvie H. M. Janssen, Lonneke V. van de Poll-Franse, Rhodé Bijlsma, Suzanne E. J. Kaal, J. Martijn Kerst, Jacqueline M. Tromp, Monique E. M. M. Bos, Roy I. Lalisang, Janine Nuver, Mathilde C. M. Kouwenhoven, Winette T. A. van der Graaf and Olga Husson
    Citation: Journal of Patient-Reported Outcomes 2023 7:93
    Content type: Short report Published on:

  5. The COMET-ICE trial demonstrated that sotrovimab clinically and statistically significantly reduces the risk of all-cause > 24-h hospitalization or death due to any cause among patients with COVID-19 at high r...

    Authors: Sacha Satram, Parima Ghafoori, Carolina M. Reyes, Tom J. H. Keeley, Helen J. Birch, Dimitra Brintziki, Melissa Aldinger, Elizabeth Alexander, Amanda Lopuski, Elias H. Sarkis, Anil Gupta, Adrienne E. Shapiro and John H. Powers III
    Citation: Journal of Patient-Reported Outcomes 2023 7:92
    Content type: Research Published on:

  6. The International Consortium for Health Outcomes Measurement (ICHOM) developed a standard set of patient-centered outcome measures for use in stroke patients. In addition to the Patie...

    Authors: Daniëlla M Oosterveer, Winke van Meijeren-Pont, Frederike van Markus-Doornbosch, Etienne Stegeman, Caroline B Terwee, Gerard M Ribbers and Thea PM Vliet Vlieland
    Citation: Journal of Patient-Reported Outcomes 2023 7:91
    Content type: Research Published on:

  7. Comparison of patient-reported outcomes in multilingual studies requires evidence of the equivalence of translated versions of the questionnaires. The present study examines the factorial validity and comparab...

    Authors: Marina Zeldovich, Fabian Bockhop, Amra Covic, Isabelle Mueller, Suzanne Polinder, Ana Mikolic, Marjolein van der Vlegel and Nicole von Steinbuechel
    Citation: Journal of Patient-Reported Outcomes 2023 7:90
    Content type: Research Published on:

  8. Treatments for type 2 diabetes vary widely in their complexity. The simplicity or complexity of a treatment regimen may have an impact on patient preference, treatment adherence, and health outcomes. The purpo...

    Authors: Katie D. Stewart, Louis S. Matza, Hiren Patel and Kristina S. Boye
    Citation: Journal of Patient-Reported Outcomes 2023 7:89
    Content type: Research Published on:

  10. 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
    Content type: Research Published on:

  11. 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
    Content type: Research Published on:

  12. 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
    Content type: Research Published on:

  13. 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
    Content type: Research Published on:

  14. 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
    Content type: Short report Published on:

  15. 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
    Content type: Research Published on:

  16. 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
    Content type: Research Published on:

  17. 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
    Content type: Research Published on:

  18. 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
    Content type: Research Published on:

  19. 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
    Content type: Research Published on:

  20. 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
    Content type: Research Published on:

  21. 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
    Content type: Short report Published on:

  22. 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
    Content type: Research Published on:

  23. 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
    Content type: Research Published on:

  24. 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
    Content type: Research Published on:

  25. 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
    Content type: Research Published on:

  26. 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
    Content type: Research Published on:

  27. 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
    Content type: Research Published on:

  28. 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
    Content type: Research Published on:

  29. 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
    Content type: Research Published on:

  30. 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
    Content type: Research Published on:

  31. 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
    Content type: Correction Published on:

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

  32. 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
    Content type: Research Published on:

  33. 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
    Content type: Research Published on:

  34. 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
    Content type: Research Published on:

  35. 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
    Content type: Research Published on:

  36. 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
    Content type: Research Published on:

  37. 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
    Content type: Research Published on:

  38. 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
    Content type: Research Published on:

  39. 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
    Content type: Review Published on:

  40. 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
    Content type: Research Published on:

  41. 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
    Content type: Short report Published on:

  42. 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
    Content type: Research Published on:

  43. 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
    Content type: Review Published on:

  44. 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
    Content type: Correction Published on:

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

  45. 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
    Content type: Review Published on:

  46. 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
    Content type: Research Published on:

  47. 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
    Content type: Short report Published on:

  48. 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
    Content type: Review Published on:

  49. 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
    Content type: Original Report Published on:
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