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  1. Caregivers rate improved communication ability as one of the most desired outcomes for successful interventions for individuals with Angelman syndrome (AS). When measuring communication ability in clinical tri...

    Authors: Dandan Chen, Christina K. Zigler, Li Lin, Nicole Lucas, Molly McFatrich, Jennifer Panagoulias, Allyson Berent and Bryce B. Reeve
    Citation: Journal of Patient-Reported Outcomes 2024 8:50
  2. Patient-Reported Outcomes (PROs) are recommended for use in clinical oncology. However, they are not routinely used in professional palliative care practices in Japan. The reasons include both patient and heal...

    Authors: Nao Ito, Azusa Sato, Kana Takeuchi, Tomoko Shigeno, Hiroko Sasaki, Maho Aoyama and Mitsunori Miyashita
    Citation: Journal of Patient-Reported Outcomes 2024 8:49
  3. General population normative values for the widely used health-related quality of life (HRQoL) measure EORTC QLQ-C30 support the interpretation of trial results and HRQoL of patients in clinical practice. Here...

    Authors: Micha J. Pilz, Fanny L.C. Loth, Sandra Nolte, Anna M.M. Thurner, Eva-Maria Gamper, Amélie Anota, Gregor Liegl and Johannes M. Giesinger
    Citation: Journal of Patient-Reported Outcomes 2024 8:48
  4. The EvalUation of goal-diRected activities to prOmote well-beIng and heAlth (EUROIA) scale is a novel patient-reported measure that was administered to individuals with chronic heart failure (CHF). It assesses go...

    Authors: Robert P. Nolan, Fatima Syed, Nicolette Stogios, Robert Maunder, Sanjeev Sockalingam, E. Shyong Tai, Mark Cobain, Rachel G. Peiris and Ella Huszti
    Citation: Journal of Patient-Reported Outcomes 2024 8:47
  5. Patient Reported Outcomes Measures (PROMs) are being used increasingly to measure health problems in stroke clinical practice. However, the implementation of these PROMs in routine stroke care is still in its ...

    Authors: B.M.P. Mourits, S.J. den Hartog, J.A. de Graaf, B. Roozenbeek, M.W.M. Post, J.M.A. Visser-Meily and E.W.M. Scholten
    Citation: Journal of Patient-Reported Outcomes 2024 8:46
  6. Chronic obstructive pulmonary disease (COPD) and muscle weakness can cause impaired physical function, significantly impacting patients’ health-related quality of life (HRQoL). Loss of muscle strength is usual...

    Authors: Maggie Tabberer, Nicola Williamson, Sophi Tatlock, Adam Gater, Rebecca Grimes, Chika Akinseye, David Neil, Aoife Mahon-Smith and Linda Nelsen
    Citation: Journal of Patient-Reported Outcomes 2024 8:45
  7. The concept of Positive Health (PH) has gained increasing attention as a way of measuring individuals’ ability to adapt in the face of contextual challenges. However, a suitable measurement instrument for PH t...

    Authors: Brian M. Doornenbal, Tim van Zutphen, Lise F. E. Beumeler, Rimke C. Vos, Mark Derks, Hinke Haisma, M. Elske van den Akker-van Marle and Jessica C. Kiefte-de Jong
    Citation: Journal of Patient-Reported Outcomes 2024 8:44
  8. Cognitive assessment is a required component of the Medicare Annual Wellness Visit (AWV). In this prospective study, we evaluated acceptability and usefulness of a patient-reported outcome measure (the PROMIS®...

    Authors: Jordan M. Harrison, Natalie C. Ernecoff, Jin-Shei Lai, Janel Hanmer, Rebecca Weir, Anthony Rodriguez, Michelle M. Langer and Maria O. Edelen
    Citation: Journal of Patient-Reported Outcomes 2024 8:43
  9. This study compares clinical pain outcomes between patients in a pain treatment program that received a Fitbit, to patients that did not. We also explored: (1) cognitive, emotional, and psychological factors t...

    Authors: Tiffany Toor, Sarah Palyo, Kathryn Schopmeyer, Alan N. Simmons and Irina A. Strigo
    Citation: Journal of Patient-Reported Outcomes 2024 8:42
  10. The Near Visual Acuity Questionnaire Presbyopia (NAVQ-P) is a patient-reported outcome (PRO) measure that was developed in a phakic presbyopia population to assess near vision function impacts. The study refin...

    Authors: Joel Sims, Brigitte Sloesen, Sarah Bentley, Christel Naujoks, Rob Arbuckle, Sima Chiva-Razavi, Ben Pascoe, Jan Stochl, Amy Findley, Paul O’Brien and James S. Wolffsohn
    Citation: Journal of Patient-Reported Outcomes 2024 8:41
  11. Forcibly displaced populations are highly vulnerable to psychosocial distress and mental disorders, including alcohol misuse. In an ongoing trial that seeks to develop a transdiagnostic intervention addressing...

    Authors: C.F. van der Boor, D. Taban, K. Ismail, J. Simon, B. Roberts, D. Fuhr, W.A. Tol and G. Greco
    Citation: Journal of Patient-Reported Outcomes 2024 8:40
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. 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
  28. 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
  29. 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
  30. 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
  31. 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
  32. 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
  33. 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
  34. 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
  35. 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
  36. 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
  37. 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
  38. 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
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
  44. 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
  45. 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
  46. 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
  47. 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
  48. 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
  49. 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

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