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  1. The Swedish Inflammatory Bowel Disease Registry (SWIBREG) includes approximately 84% of all patients with inflammatory bowel disease (IBD) treated with immunomodulators, biologics or surgery in Sweden. Data on...

    Authors: Jack Latteur, Olivia Ernstsson, Evalill Nilsson, Susanna Jäghult and Emelie Heintz
    Citation: Journal of Patient-Reported Outcomes 2024 8:39
  2. The FROM-16 is a generic family quality of life (QoL) instrument that measures the QoL impact of patients’ disease on their family members/partners. The study aimed to assess the responsiveness of FROM-16 to c...

    Authors: R. Shah, A.Y. Finlay, M.S. Salek, H. Allen, S.J. Nixon, M. Nixon, K. Otwombe, F.M. Ali and J.R. Ingram
    Citation: Journal of Patient-Reported Outcomes 2024 8:38
  3. Goal attainment scaling (GAS), an established individualized, patient-centred outcome measure, is used to capture the patient’s voice. Although first introduced ~60 years ago, there are few published guideline...

    Authors: Kulpreet Cheema, Taylor Dunn, Chere Chapman, Kenneth Rockwood, Susan E. Howlett and Gunes Sevinc
    Citation: Journal of Patient-Reported Outcomes 2024 8:37
  4. The EuroQol Group recently developed two new instruments, the EQ Health and Wellbeing (EQ-HWB) and the EQ Health and Wellbeing short version (EQ-HWB-S). The EQ-HWB and EQ-HWB-S are intended to capture a broad ...

    Authors: Sara Masutti, Camilla Falivena, Fredrick Dermawan Purba, Claudio Jommi, Clara Mukuria and Aureliano Paolo Finch
    Citation: Journal of Patient-Reported Outcomes 2024 8:36
  5. As patient-reported outcome measures (PROMs) become available to clinicians for routine clinical decision-making, many wonder how to define a meaningful change in a patient’s PROM score. Some PROMs have a spec...

    Authors: David Cella, Kyle Nolla and John Devin Peipert
    Citation: Journal of Patient-Reported Outcomes 2024 8:35
  6. The ability to efficiently identify patients at higher risk of poor outcomes after joint replacement would enable limited resources for post-operative follow-up to be directed to those with the greatest clinic...

    Authors: Ilana N. Ackerman, Kara Cashman, Michelle Lorimer, Emma Heath and Ian A. Harris
    Citation: Journal of Patient-Reported Outcomes 2024 8:34
  7. Half of the patients with Neurofibromatosis type 1 (NF1) develop one or more tumours called plexiform neurofibromas, which can have a significant impact on Quality of Life (QoL). The PlexiQoL questionnaire is ...

    Authors: Britt A. E. Dhaenens, Sarah A. van Dijk, Walter Taal, D. Christine Noordhoek, Anna Coffey, Stephen P. McKenna and Rianne Oostenbrink
    Citation: Journal of Patient-Reported Outcomes 2024 8:33
  8. In endoscopic care, favourable patient experiences before, during and after a colonoscopy are essential for the patient’s willingness to repeat the procedure. To ensure that significant experiences are measure...

    Authors: Annica Rosvall, Malin Axelsson, Ervin Toth, Christine Kumlien and Magdalena Annersten Gershater
    Citation: Journal of Patient-Reported Outcomes 2024 8:32
  9. In this hypothesis-generating analysis, we examined whether longitudinal changes in patient-reported outcomes (PROs), such as symptoms, over time would be prognostic for progression-free survival (PFS) and ove...

    Authors: Jessie T. Yan, Célia Bel, Peter C. Trask and Ernest Lo
    Citation: Journal of Patient-Reported Outcomes 2024 8:31
  10. The Upper Digestive Disease (UDD) Tool™ is used to monitor symptom frequency, intensity, and interference across nine symptom domains and includes two Patient-Reported Outcome Measurement Information System (P...

    Authors: Minji K. Lee, Mohamad K Abou Chaar, Shanda H Blackmon and Kathleen J Yost
    Citation: Journal of Patient-Reported Outcomes 2024 8:30
  11. There is increased emphasis on incorporating patient perspectives and patient-relevant endpoints in drug development. We developed a conceptual model of the impact of chronic hepatitis B (CHB) on patients’ liv...

    Authors: Jane Abbott, Natalie V. J. Aldhouse, Helen Kitchen, Hannah C. Pegram, Fiona Brown, Malcolm Macartney, Angelina Villasis-Keever, Urbano Sbarigia, Tetsuro Ito, Eric K. H. Chan and Patrick T. Kennedy
    Citation: Journal of Patient-Reported Outcomes 2024 8:29
  12. Quality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the relatively high prevalence of cognitive impairmen...

    Authors: Claire Hutchinson, Jyoti Khadka, Matthew Crocker, Kiri Lay, Rachel Milte, David GT Whitehirst, Lidia Engel and Julie Ratcliffe
    Citation: Journal of Patient-Reported Outcomes 2024 8:28
  13. The study aimed to cross-culturally adapt the Patient-Reported Outcomes Measurement Information System Short Form v1.0 - Depression 8a (PROMIS SF v1.0 - Depression 8a) into Thai and evaluate its psychometric p...

    Authors: Ruetaichanok Sansatan, Rotsalai Kanlayanaphotporn, Mark P. Jensen, Helena Correia and Prawit Janwantanakul
    Citation: Journal of Patient-Reported Outcomes 2024 8:27
  14. Patient satisfaction is a vital metric for assessing healthcare quality and delivering patient-centered care. It can predict service utilization patterns by determining healthcare users’ contentment with their...

    Authors: Laxman Datt Bhatt, Sandhaya Ghimire and Kabita Khanal
    Citation: Journal of Patient-Reported Outcomes 2024 8:26
  15. Patient-reported outcome measures (PROMs) are increasingly administered in high-income countries to monitor health-related quality of life of breast cancer patients undergoing breast reconstruction. Although l...

    Authors: Sri Harshini Malapati, Colby J. Hyland, George Liang, Maria O. Edelen, Amanda Fazzalari, Manraj N. Kaur, Paul A. Bain, Gita N. Mody and Andrea L. Pusic
    Citation: Journal of Patient-Reported Outcomes 2024 8:25
  16. This study aimed to compare the psychometric performance of the Cystic Fibrosis Questionnaire–Revised–8 Dimensions (CFQ-R-8D), a new, condition-specific, preference-based measure, with that of generic preferen...

    Authors: Clara Mukuria, Donna Rowen, Sarah Acaster, Lisa J. McGarry, Yiyue Lou, Patrick R. Sosnay and Alexandra L. Quittner
    Citation: Journal of Patient-Reported Outcomes 2024 8:24
  17. Utilization of electronic patient-reported outcome (ePRO) tools to monitor symptoms in patients undergoing cancer treatment has shown clinical benefits. Tennessee Oncology (TO) implemented an ePRO platform in ...

    Authors: Natalie R Dickson, Karen D Beauchamp, Toni S Perry, Ashley Roush, Deborah Goldschmidt, Marie Louise Edwards and L Johnetta Blakely
    Citation: Journal of Patient-Reported Outcomes 2024 8:23
  18. Goals generated by Goal Attainment Scaling (GAS) can be used as an outcome measure to promote person-centred research and care. There are no training packages which support its use outside of the rehabilitatio...

    Authors: Benignus Logan, Andrea K. Viecelli, Elaine M. Pascoe, Bonnie Pimm, Laura E. Hickey, David W. Johnson and Ruth E. Hubbard
    Citation: Journal of Patient-Reported Outcomes 2024 8:22
  19. Most patient-reported outcome (PROs) used in thrombosis research and clinical practice are delivered using technology like online questionnaires. However, only few have undergone formal electronic adaptation f...

    Authors: Stine Foged Lindegaard, Anette Arbjerg Højen and Nanna Rolving
    Citation: Journal of Patient-Reported Outcomes 2024 8:21
  20. In the past few decades, particularly in the mental health setting, there has been growing interest in using Patient Reported Outcome Measures (PROMs) to assess the efficacy of the treatments in healthcare sys...

    Authors: Kalpana Thapa Bajgain, Justino Mendoza, Farwa Naqvi, Fariba Aghajafari, Karen Tang, Jennifer Zwicker and Maria-Jose Santana
    Citation: Journal of Patient-Reported Outcomes 2024 8:20
  21. The Consensus Sleep Diary (CSD) is widely used to assess subjective sleep. Psychometric evaluations and focus-groups support its validity and clinical usefulness, but further research into its validity is need...

    Authors: Christina Bini, Carina Hjelm, Amanda Hellström, Kristofer Årestedt, Anders Broström and Christina Sandlund
    Citation: Journal of Patient-Reported Outcomes 2024 8:19
  22. In the context of Greece, many instruments measuring constructs pertinent to child and adolescent mental health lacked a locally-validated, freely-available version. As part of a nationwide survey, we translat...

    Authors: Vasiliki Eirini Karagiorga, Julia Luiza Schafer, Lauro Estivalete Marchionatti, Arthur Caye, Aspasia Serdari, Konstantinos Kotsis, Maria Basta, Panagiota Balikou, Efstathia Kapsimalli, Andromachi Mitropoulou, Nikanthi Klavdianou, Domna Zeleni, Sotiria Mitroulaki, Anna Botzaki, Giorgos Gerostergios, Giorgos Samiotakis…
    Citation: Journal of Patient-Reported Outcomes 2024 8:18
  23. The majority of non-metastatic breast cancer patients in sub-Saharan Africa are recommended to have mastectomy. The impact of mastectomy on a predominantly young African patient population requires evaluation....

    Authors: Olalekan Olasehinde, Kathleen A. Lynch, Debra A. Goldman, Olaide Agodirin, Chukwuma Okereke, Funmilola O. Wuraola, Israel Adeyemi Owoade, Promise Rebecca Akinmaye, Olusola Ajibade, Karin Barber, Joshua Ogunwale, Olusegun Alatise, T. Peter Kingham, Andrea Pusic and Anya Romanoff
    Citation: Journal of Patient-Reported Outcomes 2024 8:17
  24. Presbyopia is an age-related condition that causes a decreased ability to focus on nearby objects. Multifocal contact lenses are commonly used to address this issue. However, there seems to be a notable dissat...

    Authors: Elsa Albero-Ros, Amalia Lorente-Velázquez and Mariano González-Pérez
    Citation: Journal of Patient-Reported Outcomes 2024 8:16
  25. Decisions regarding maintenance therapy in patients with multiple myeloma should be based on both treatment efficacy and health-related quality of life (HRQL) consequences. In the CARFI trial, patients with fi...

    Authors: Lene Kongsgaard Nielsen, Fredrik Schjesvold, Sören Möller, Nina Guldbrandsen, Markus Hansson, Kari Remes, Valdas Peceliunas, Niels Abildgaard, Henrik Gregersen and Madeleine T. King
    Citation: Journal of Patient-Reported Outcomes 2024 8:15
  26. Childhood cancer survivors (CCS) are at risk of deficits in their social outcomes, a key aspect of overall health and quality of life. Social outcomes of import are ill-defined leading to potential gaps in res...

    Authors: Sarah H. Milner, R. G. Feltbower, K. L. Absolom and A. W. Glaser
    Citation: Journal of Patient-Reported Outcomes 2024 8:14
  27. The construct validity and interpretation of the Patient-Reported Outcome Measurement Information System (PROMIS®) Physical Function short form 20a (PF20a) questionnaire were evaluated for patients with late-onse...

    Authors: Priya S. Kishnani, Simon Shohet, Syed Raza, Noemi Hummel, Jeffrey P. Castelli, Sheela Sitaraman Das, Heng Jiang, Agnieszka Kopiec, Ian Keyzor and Andreas Hahn
    Citation: Journal of Patient-Reported Outcomes 2024 8:13
  28. Individual appraisals of personal well-being consider a spectrum of constructs including the reflections on the degree to which one’s life is ultimately secure, meaningful, or valued in the context of dynamic ...

    Authors: Jumana Hashim, Huso Yi, Pin Sym Foong, E Shyong Tai and Robert P Nolan
    Citation: Journal of Patient-Reported Outcomes 2024 8:12
  29. Cardiovascular diseases (CVD) represent the world’s leading cause of death. Health-related quality of life (HRQoL) is a widely applied concept of patients’ perceived health and is directly linked to CVD morbid...

    Authors: Lorenza L. S. Lanini, Sebastian Euler, Claudia Zuccarella-Hackl, Rubén Fuentes Artiles, David Niederseer, Bianca Auschra, Roland von Känel and Lena Jellestad
    Citation: Journal of Patient-Reported Outcomes 2024 8:11
  30. The widespread availability of antiretroviral therapy has led to improvements in life expectancy and thus an increase in the number of people living with HIV/AIDS (PLWHA) worldwide. However, a similar increase...

    Authors: Maria Panayi, Georgios K. Charalambous and Eleni Jelastopulu
    Citation: Journal of Patient-Reported Outcomes 2024 8:10
  31. Interpretation thresholds for patient-reported outcome (PRO) scores are of crucial importance, particularly when interpreting treatment benefit. This study was designed to determine the within-patient meaningf...

    Authors: Regina Rendas-Baum, Xiaochen Lin, Mark Kosinski, Jakob Bue Bjorner, Marguerite G. Bracher and Wen-Hung Chen
    Citation: Journal of Patient-Reported Outcomes 2024 8:9
  32. No specific measures exist to assess patient-reported symptoms experienced by individuals with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) or mantle cell lymphoma (MCL). This study was ...

    Authors: Jessica T. Markowitz, Flora Mazerolle, Teya Lovell, Lisa M. Hess, Paolo B. Abada, Antoine Regnault and Nalin Payakachat
    Citation: Journal of Patient-Reported Outcomes 2024 8:8
  33. Established health-related quality of life scores do not consider both subjective and objective indices of health. We propose the subjective and objective quality of life score (SOQOL) for the comprehensive as...

    Authors: Ralph J. Mobbs, R. Dineth Fonseka, Pragadesh Natarajan, Lianne Koinis and Monish Maharaj
    Citation: Journal of Patient-Reported Outcomes 2024 8:7
  34. The Weight-Specific Adolescent Instrument for Economic Evaluation (WAItE) is a physical weight-specific patient reported outcome measure for use in adolescence. The purpose of this study was to use the Time Tr...

    Authors: Tomos Robinson, Sarah Hill, Giovany Orozco-Leal, Ashleigh Kernohan, William King and Yemi Oluboyede
    Citation: Journal of Patient-Reported Outcomes 2024 8:6
  35. The Patient-Reported Outcomes Measurement and Information System (PROMIS®) global health items (global-10) yield physical and mental health scale scores and the PROMIS-Preference (PROPr) scoring system estimat...

    Authors: Ron D. Hays, Patricia M. Herman, Nabeel Qureshi, Anthony Rodriguez and Maria Orlando Edelen
    Citation: Journal of Patient-Reported Outcomes 2024 8:5
  36. Patient-reported outcomes (PROs) play a crucial role in assessing rheumatic diseases, o...

    Authors: A. Kernder, M. Rohde, H. Acar, C. Düsing, R. Fischer-Betz, I. Haase, J. Mucke, O. Sander, J. G. Richter, T. Filla, M. Schneider and G. Chehab
    Citation: Journal of Patient-Reported Outcomes 2024 8:4
  37. The FitMáx© was developed as a questionnaire-based instrument to estimate Cardiorespiratory Fitness (CRF) expressed as oxygen uptake at peak exercise (VO2peak). Test–retest reliability is a clinometric measuremen...

    Authors: Renske Meijer, Goof Schep, Marta Regis, Nicole E. Papen-Botterhuis, Hans H. C. M. Savelberg and Martijn van Hooff
    Citation: Journal of Patient-Reported Outcomes 2024 8:3
  38. Tardive dyskinesia (TD), a movement disorder in which patients experience abnormal involuntary movements, can have profound negative impacts on physical, cognitive, and psychosocial functioning. The Abnormal I...

    Authors: Robert H. Farber, Donald E. Stull, Brooke Witherspoon, Christopher J. Evans, Charles Yonan, Morgan Bron, Rahul Dhanda, Eric Jen and Christopher O.’ Brien
    Citation: Journal of Patient-Reported Outcomes 2024 8:2
  39. While there is increasing evidence on the benefits of PROMs in cancer care, the extent of routine collection and use of PROMs in clinical cancer practice across Australia and New Zealand (ANZ) is unknown. This...

    Authors: Ashika D. Maharaj, Natasha Roberts, Michael Jefford, Jerome Ng, Claudia Rutherford and Bogda Koczwara
    Citation: Journal of Patient-Reported Outcomes 2024 8:1
  40. Women with Fibromyalgia Syndrome (FMS) can benefit form adequate social support to fight the consequences of their illness, but the extent to which this is available to those with low incomes who live in depre...

    Authors: Sebastian Eustaquio Martín Pérez, Isidro Miguel Martín Pérez, Ania Álvarez Sánchez, Paula Acosta Pérez and Eliana Rodríguez Alayón
    Citation: Journal of Patient-Reported Outcomes 2023 7:135
  41. To account for heterogeneity in systemic lupus erythematosus (SLE) and bridge discrepancies between patient- and physician-perceived SLE activity, we developed the Type 1 and 2 SLE model. We examined PROMIS-29...

    Authors: Kai Sun, Amanda M. Eudy, Nathaniel Harris, David S. Pisetsky, Lisa G. Criscione-Schreiber, Rebecca E. Sadun, Jayanth Doss, Megan E. B. Clowse and Jennifer L. Rogers
    Citation: Journal of Patient-Reported Outcomes 2023 7:136
  42. Understanding patients’ perspectives regarding drug tolerability, in addition to effectiveness, provides a complete picture of the patient experience and supports more informed therapeutic decision-making. The...

    Authors: Stacy Davis, Teresa Edwards, Lindsey Norcross, Sheri Fehnel, Amélie Beaudet, Marie Eckart and John Fastenau
    Citation: Journal of Patient-Reported Outcomes 2023 7:134
  43. More than 60% of patients with atrial fibrillation (AF) have a significant health-related quality of life (HRQoL) impairment. HRQoL, a patient-reported outcome (PRO), has become an important endpoint to assess...

    Authors: Putri Zulmiyusrini, Muhammad Yamin, Muhadi Muhadi, Juferdy Kurniawan and Simon Salim
    Citation: Journal of Patient-Reported Outcomes 2023 7:133
  44. The progression of Duchenne muscular dystrophy (DMD) is characterized by loss of ambulation, respiratory insufficiency, cardiomyopathy, and early mortality. DMD profoundly impacts health-related quality-of-lif...

    Authors: Ivana F. Audhya, Shelagh M. Szabo, Andrea Bever, Fiona O’Sullivan, Daniel C. Malone, David Feeny, Peter Neumann, Susan T. Iannaccone, P. Jayasinghe and Katherine L. Gooch
    Citation: Journal of Patient-Reported Outcomes 2023 7:132
  45. Patient-reported outcomes (PROs) collection and utilization improves patient-provider communication, symptom reporting, and patient satisfaction. Despite their significance, the science and utility of PROs are...

    Authors: Samuel A. Florentino, Suzanne B. Karan, Gabriel Ramirez and Judith F. Baumhauer
    Citation: Journal of Patient-Reported Outcomes 2023 7:131
  46. Patient-reported outcome (PRO) measures provide valuable evidence in clinical trials; however, poor compliance with PRO measures is a notable and long-standing problem, resulting in missing data that potential...

    Authors: Anna Hundt Golden, Meghan Hufstader Gabriel, Jon Russo, Mark Price, Stephen Ruhmel, Ami Nilsson, Patricia Shepherd Delong, Jennifer Jelsma and Michelle Carty
    Citation: Journal of Patient-Reported Outcomes 2023 7:130
  47. Duchenne muscular dystrophy (DMD) is a rare, severe, fatal neuromuscular disease characterized by progressive atrophy and muscle weakness, resulting in loss of ambulation, decreased upper body function, and im...

    Authors: Victoria Brown, Elizabeth Merikle, Kelly Johnston, Katherine Gooch, Ivana Audhya and Linda Lowes
    Citation: Journal of Patient-Reported Outcomes 2023 7:129
  48. In January 2021, 999 COVID-19 positive adults in the US enrolled in an online, direct-to-patient registry to describe daily symptom severity and progression over 28 days. The most commonly reported and persist...

    Authors: Emma Brinkley, Kendall Knuth, Tom Kwon, Christina Mack, Heidi Leister-Tebbe, Weihand Bao, Matthew W Reynolds and Nancy Dreyer
    Citation: Journal of Patient-Reported Outcomes 2023 7:128
  49. Case-mix adjustment of patient reported experiences (PREMs) and outcomes (PROMs) of care are meant to enable fair comparison between units (e.g. care providers or countries) and to show where improvement is po...

    Authors: Peter P. Groenewegen, Peter Spreeuwenberg, Alastair H. Leyland, Dolf de Boer and Wienke Boerma
    Citation: Journal of Patient-Reported Outcomes 2023 7:127
  50. The onset of COVID-19 has caused an international upheaval of traditional in-person approaches to care delivery. Rapid system-level transitions to virtual care provision restrict the ability of healthcare prof...

    Authors: Bishnu Bajgain, Sarah Rabi, Sadia Ahmed, Veronika Kiryanova, Paul Fairie and Maria J. Santana
    Citation: Journal of Patient-Reported Outcomes 2023 7:126

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