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  1. There is interest in participants using their own smartphones or tablets (“bring your own device”; BYOD) to complete patient-reported outcome (PRO) measures in clinical studies. Our study aimed to qualitativel...

    Authors: Louise Newton, Oliver Knight-West, Sonya Eremenco, Stacie Hudgens, Mabel Crescioni, Tara Symonds, David S. Reasner, Bill Byrom, Paul O’Donohoe and Susan Vallow
    Citation: Journal of Patient-Reported Outcomes 2022 6:86
  2. Given the urgent need for vaccines and treatments for coronavirus disease 2019 (COVID-19), the Symptoms of Infection with Coronavirus-19 (SIC), a comprehensive, patient-reported outcome (PRO) measure of signs ...

    Authors: Carla Romano, Sheri Fehnel, Jeffrey Stoddard, Jerald Sadoff, Sandy Lewis, Pauline McNulty, Eric K. H. Chan, Emily Evans, Carol Jamieson, Ashley F. Slagle, Allen Mangel and Kelly McQuarrie
    Citation: Journal of Patient-Reported Outcomes 2022 6:85
  3. New treatments are being evaluated for lipodystrophy; however, limited information is available on the patient experience. Results of a prior patient panel showed that hunger and temperature-related symptoms w...

    Authors: Susan A. Martin, Robert J. Sanchez, Oyebimpe Olayinka-Amao, Charles Harris and Sheri Fehnel
    Citation: Journal of Patient-Reported Outcomes 2022 6:84
  4. Multimorbidity is both an individual and societal problem. For society, patients with multimorbidity increase healthcare costs. For the individual, living with multimorbidity is complex, and there is an invers...

    Authors: Kristine Bissenbakker, Anne Møller, John Brandt Brodersen and Alexandra Brandt Ryborg Jønsson
    Citation: Journal of Patient-Reported Outcomes 2022 6:83
  5. Fatigue is a highly prevalent and disabling symptom in cancer survivors. Although many measures have been developed to assess survivors’ fatigue, their ability to accurately capture change following interventi...

    Authors: Catherine E. Mosher, Ekin Secinti, Shelley A. Johns, Kurt Kroenke and Laura Q. Rogers
    Citation: Journal of Patient-Reported Outcomes 2022 6:82
  6. Patient-reported outcome measures (PROMs) are emerging tools used to capture a patient’s daily health status and enhance communication between patients and healthcare professionals. This study examined whether...

    Authors: Anna Sophie Belling Krontoft, Johanna Walsøe Jensen, Mette Charlotte Pedersen, Maria Pors, Diljit Kaur-Knudsen, Claus Zachariae and Lone Skov
    Citation: Journal of Patient-Reported Outcomes 2022 6:81
  7. Detecting anxiety in oncology patients is important, requiring valid yet brief measures. One increasingly popular approach is the Patient Reported Outcomes Measurement Information System (PROMIS); however, its...

    Authors: Kerrie Clover, Sylvie D. Lambert, Christopher Oldmeadow, Benjamin Britton, Alex J. Mitchell, Gregory Carter and Madeleine T. King
    Citation: Journal of Patient-Reported Outcomes 2022 6:80
  8. The quality of physiotherapy care for patients with chronic obstructive pulmonary disease (COPD) can be improved by comparing outcomes of care in practice.

    Authors: Arie C. Verburg, Jessica Zincken, Henri Kiers, Simone A. van Dulmen and Philip J. van der Wees
    Citation: Journal of Patient-Reported Outcomes 2022 6:79
  9. Third sector organisations such as charities and community groups are using Patient Reported Outcome Measures (PROMs) at an aggregated service level to demonstrate their impact to commissioners to generate or ...

    Authors: Alexis Foster, Alicia O’Cathain, Janet Harris, Guy Weston, Lucy Andrews and Olga Andreeva
    Citation: Journal of Patient-Reported Outcomes 2022 6:78
  10. Despite evidence for clinical benefits, recommendations in guidelines, and options for electronic data collection, routine assessment of patient-reported outcomes (PROs) is mostly not implemented in clinical p...

    Authors: Thomas Nordhausen, Katharina Lampe, Dirk Vordermark, Bernhard Holzner, Haifa-Kathrin Al-Ali, Gabriele Meyer and Heike Schmidt
    Citation: Journal of Patient-Reported Outcomes 2022 6:77
  11. Primary sclerosing cholangitis (PSC) is a rare incurable disease of the bile ducts and liver which can significantly impair quality of life (QoL). No existing QoL tools are entirely suitable for people living ...

    Authors: Elena Marcus, Patrick Stone, Douglas Thorburn, Martine Walmsley and Bella Vivat
    Citation: Journal of Patient-Reported Outcomes 2022 6:76
  12. PIK3CA-Related Overgrowth Spectrum (PROS) are rare syndromes caused by a mutation in the PIK3CA gene, including fibroadipose hyperplasia or overgrowth; congenital lipomatous overgrowth, vascular malformations,...

    Authors: Kimberly Raymond, Susan Vallow, Cory Saucier, Kristi Jackson, Michelle K. White, Andrew Lovley and Denise D’Alessio
    Citation: Journal of Patient-Reported Outcomes 2022 6:75
  13. Major depressive disorder (MDD) directly impacts patients’ lives including symptoms, functioning and health-related quality-of-life (HRQoL). Patient-reported outcomes can capture these impacts, however interpr...

    Authors: Heather Rozjabek, Nan Li, Holger Hartmann, Dong Jing Fu, Carla Canuso and Carol Jamieson
    Citation: Journal of Patient-Reported Outcomes 2022 6:74
  14. Patient reported outcome measures (PROMs) engage patients in co-evaluation of their health and wellbeing outcomes. This study aimed to determine the feasibility, response rate, degree of recovery and patient a...

    Authors: Natasha K. Brusco, Victoria Atkinson, Jeffrey Woods, Paul S. Myles, Anita Hodge, Cathy Jones, Damien Lloyd, Vincent Rovtar, Amanda M. Clifford and Meg E. Morris
    Citation: Journal of Patient-Reported Outcomes 2022 6:73
  15. As the COVID-19 pandemic evolves, more information is needed on its long-term impacts on health-related quality of life (HRQoL) and social determinants of health (SDoH). The aim of the study was to assess HRQo...

    Authors: Kathleen R. Case, Chen-Pin Wang, Meredith G. Hosek, Sarah F. Lill, Alexandra B. Howell, Barbara S. Taylor, James Bridges, Daniel J. MacCarthy, Paula Winkler and Joel Tsevat
    Citation: Journal of Patient-Reported Outcomes 2022 6:72
  16. To evaluate the measurement properties of the Oxford Hip Score (OHS), EQ-5D-5L utility index and EQ-5D-5L visual analogue scale (EQ-VAS) in patients undergoing elective total hip arthroplasty in Australia.

    Authors: D-Yin Lin, Tim Soon Cheok, Anthony J. Samson, Billingsley Kaambwa, Brigid Brown, Christopher Wilson, Hidde M. Kroon and Ruurd L. Jaarsma
    Citation: Journal of Patient-Reported Outcomes 2022 6:71
  17. To realize the broader benefits of electronic patient-reported outcome measures (ePROMs) in routine care, we used the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework to infor...

    Authors: Afaf Girgis, Adeola Bamgboje-Ayodele, Orlando Rincones, Shalini K. Vinod, Sandra Avery, Joseph Descallar, Allan ‘Ben’ Smith, Belinda Arnold, Anthony Arnold, Victoria Bray, Ivana Durcinoska, Nicole M. Rankin and Geoff P. Delaney
    Citation: Journal of Patient-Reported Outcomes 2022 6:70
  18. Thirst is a powerfully distressing sensation that occurs most frequently in the immediate postoperative period. Postoperative thirst is prevalent, the moderate-to-severe type is estimated to affect 53.2–69.8% ...

    Authors: Kumlachew Geta Belete, Henos Enyew Ashagrie, Misganaw Mengie Workie and Seid Adem Ahmed
    Citation: Journal of Patient-Reported Outcomes 2022 6:69
  19. Activity Scale for Kids (ASK) is self reported, widely used tool to measure the physical disability in children aged 5–15 years. It has two versions; ASK-performance version and ASK-capability version, both wi...

    Authors: Regan Shakya, Renuka Suwal, Ishwar Adhikari, Jasmine Shrestha, Subham Gyawali and Archana Shrestha
    Citation: Journal of Patient-Reported Outcomes 2022 6:68
  20. Value-based health care represents a patient-centered approach by valuing Patient-Reported Outcome Measures (PROMs). Our aim was to describe the additional value of PROMs after an acute stroke over conventiona...

    Authors: Ester Sanchez-Gavilan, Estefania Montiel, Maria Baladas, Sofia Lallanas, Eva Aurin, Carolina Watson, Maria Gutierrez, Yolima Cossio, Marc Ribo, Carlos A. Molina and Marta Rubiera
    Citation: Journal of Patient-Reported Outcomes 2022 6:66
  21. Previous research has shown that the inclusion of patient-reported outcomes measures in the patient’s visit to the oncologists might improve the quality of global health care. The aim of the study was to asses...

    Authors: Cecilia Castillo, Ana Laura Alfonso, Juan J. Dapueto, Natalia Camejo and Martín Silva
    Citation: Journal of Patient-Reported Outcomes 2022 6:65
  22. The COVID-19 pandemic has impacted the mental health and well-being of health care workers (HCWs). This study examined mental health outcomes and COVID-related stress impacts among a diverse sample of ambulato...

    Authors: Joshua Biber, Bethany Ranes, Shanieek Lawrence, Vishal Malpani, Trong Tony Trinh, Andrew Cyders, Steven English, Charles L. Staub, Kristen L. McCausland, Mark Kosinski, Nishtha Baranwal, Daniel Berg and Rodica Pop
    Citation: Journal of Patient-Reported Outcomes 2022 6:63
  23. Life engagement in the context of mental health is a broad term that describes positive health aspects relating to cognition, vitality, motivation and reward, and the ability to feel pleasure—concepts that are...

    Authors: Roger S. McIntyre, Zahinoor Ismail, Christopher P. Watling, Catherine Weiss, Stine R. Meehan, Primrose Musingarimi and Michael E. Thase
    Citation: Journal of Patient-Reported Outcomes 2022 6:62
  24. Long-term treatment adherence is a worldwide concern, with nonadherence resulting from a complex interplay of behaviors and health beliefs. Determining an individual’s risk of nonadherence and identifying the ...

    Authors: Béatrice Tugaut, Selam Shah, Kevin Dolgin, Hanna Rebibo Seror, Benoit Arnould, Marie-Eve Laporte, Aaron Lee, Lydiane Nabec, Reem Kayyali, Joshua Wells, John D. Piette and Guillaume Hubert
    Citation: Journal of Patient-Reported Outcomes 2022 6:61
  25. Patient-reported outcome (PRO) measures are critical for assessing treatment benefit of anticancer treatments. Although PRO measures have been developed with the intention of capturing patient-centric concepts...

    Authors: Carla Romano, Nimanee Harris, Ari Gnanasakthy, Denise D’Alessio and David Chandiwana
    Citation: Journal of Patient-Reported Outcomes 2022 6:60
  26. The Patient-Reported Outcome Measurement Information System® (PROMIS®) was developed to reliably measure health-related quality of life using the patient’s voice. To achieve these aims, PROMIS utilized Item Respo...

    Authors: Robert Chapman
    Citation: Journal of Patient-Reported Outcomes 2022 6:59
  27. As patient-reported outcome measures (PROMs) have become of significant importance in patient evaluation, adequately selecting the appropriate instrument is an integral part of pediatric orthopedic research an...

    Authors: J. P. Ruben Kalle, Tim F. F. Saris, Inger N. Sierevelt, Denise Eygendaal and Christiaan J. A. van Bergen
    Citation: Journal of Patient-Reported Outcomes 2022 6:58
  28. Real-world evidence (RWE) plays an increasingly important role within global regulatory and reimbursement processes. RWE generation can be enhanced by the collection and use of patient-reported outcomes (PROs)...

    Authors: Konrad Maruszczyk, Olalekan Lee Aiyegbusi, Barbara Torlinska, Philip Collis, Thomas Keeley and Melanie J. Calvert
    Citation: Journal of Patient-Reported Outcomes 2022 6:57
  29. This article describes qualitative interviews conducted with children (aged 6–11), adolescents (aged 12–17), and adults with the common cold as well as parents/caregivers of the 6–8-year-old children. The aim ...

    Authors: Rob Arbuckle, Chris Marshall, Laura Grant, Kate Burrows, Helmut H. Albrecht and Tim Shea
    Citation: Journal of Patient-Reported Outcomes 2022 6:56
  30. An observer-reported outcome (ObsRO) measure assessing both symptom control and health-related quality of life (HRQoL) in children with asthma younger than 6 years is lacking. The objective of this study was t...

    Authors: Yi Zhang, Jennifer L. Clegg, Shannon Keith, Shehan McFadden, Tara Symonds, Rajesh Kumar, Asif H. Khan, Siddhesh Kamat and Jingdong Chao
    Citation: Journal of Patient-Reported Outcomes 2022 6:55
  31. The aim of this study was to develop and validate a short and feasible questionnaire to measure health-related quality of life (HRQoL) in patients with peripheral artery disease (PAD). The content of the new i...

    Authors: Ebru-Berrin Arman, Matthias Augustin, Nicole Mohr, Sebastian E. Debus, Peter Breuer and Christine Blome
    Citation: Journal of Patient-Reported Outcomes 2022 6:54
  32. The insights gleaned from patient-reported outcomes (PROs) have implications across the healthcare ecosystem, from clinical investigations to evaluate the safety and effectiveness of medical devices to clinica...

    Authors: Christina M. Webber, Brittany Caldwell, Fraser D. Bocell, Anindita Saha and Michelle E. Tarver
    Citation: Journal of Patient-Reported Outcomes 2022 6:53
  33. Use of digital health services, such as digital patient-reported outcomes, depends on many different human factors as well as digital design solutions. One factor is clinicians’ attitude towards the system, th...

    Authors: Amalie Søgaard Nielsen, Charlotte W. Appel, Birgit Furstrand Larsen, Lisa Hanna and Lars Kayser
    Citation: Journal of Patient-Reported Outcomes 2022 6:52
  34. To evaluate the internal structure (structural validity and internal consistency) and propose a classification for the distress caused by the presence of pelvic floor dysfunction (PFD) symptoms based on the to...

    Authors: Guilherme Tavares de Arruda, Dalton Francisco de Andrade and Janeisa Franck Virtuoso
    Citation: Journal of Patient-Reported Outcomes 2022 6:51
  35. Clostridioides difficile infection (CDI) is associated with high recurrence rates impacting health-related quality of life (HrQOL). However, patient-reported data are lacking particularly in the outpatient settin...

    Authors: Richard L. Hengel, Claudia P. Schroeder, Jinhee Jo, Timothy E. Ritter, Ramesh V. Nathan, Anne J. Gonzales-Luna, Engels N. Obi, Ryan J. Dillon, Lucinda J. Van Anglen and Kevin W. Garey
    Citation: Journal of Patient-Reported Outcomes 2022 6:49
  36. Respiratory Syncytial Virus (RSV) is a leading cause of hospitalization and serious respiratory illness in infants/young children. The objectives of this study were to (1) identify important RSV-related signs ...

    Authors: Sophi Tatlock, Sarah Bentley, Rob Arbuckle, Linda Abetz-Webb and Jane Scott
    Citation: Journal of Patient-Reported Outcomes 2022 6:48
  37. The SF-6Dv2 classification system assesses health states in six domains—physical functioning, role function, bodily pain, vitality, social functioning, and mental health. Scores have previously been derived fr...

    Authors: Lynne Broderick, Jakob B. Bjorner, Miranda Lauher-Charest, Michelle K. White, Mark Kosinski, Brendan Mulhern and John Brazier
    Citation: Journal of Patient-Reported Outcomes 2022 6:47
  38. The first wave of the COVID-19 pandemic has produced remarkable effects on the sleep quality and mental status of the general population and more dramatic effects on patients with chronic illness. Patients wit...

    Authors: Lucia Spicuzza, Salvatore Mancuso, Raffaele Campisi and Carlo Vancheri
    Citation: Journal of Patient-Reported Outcomes 2022 6:46
  39. The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) is a generic instrument for the assessment of functioning in six domains, resulting in a total health-related disability score. The...

    Authors: Cecilia Svanborg, Ahmed Amer, Axel Nordenskjöld, Mia Ramklint, Per Söderberg, Stefan Tungström, Ylva Ginsberg and Liselotte Hermansson
    Citation: Journal of Patient-Reported Outcomes 2022 6:45
  40. Chronic pain management multi/interdisciplinary programs attempt to address all elements of the biopsychosocial model. The primary objective of this retrospective study (based on practice-based audit) was to d...

    Authors: Angela Mailis, Amol Deshpande and S. Fatima Lakha
    Citation: Journal of Patient-Reported Outcomes 2022 6:44
  41. The outlook for patients with metastatic synovial sarcoma (mSS) is poor. Better understanding of patient experience in this setting, beyond clinical measures, may guide improvements in management. Validated pa...

    Authors: Laurie Eliason, Laura Grant, Anya Francis, Anna Cardellino, Ken Culver, Sant P. Chawla, Rob Arbuckle and Shibani Pokras
    Citation: Journal of Patient-Reported Outcomes 2022 6:43
  42. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Utility-Core 10 Dimensions (QLU-C10D) is a novel cancer-specific preference-based measure (PBM) for which value sets are b...

    Authors: Eva-Maria Gamper, Madeleine T. King, Richard Norman, Fanny L. C. Loth, Bernhard Holzner and Georg Kemmler
    Citation: Journal of Patient-Reported Outcomes 2022 6:42
  43. At the onset of the COVID-19 pandemic, there was limited understanding of symptom experience and disease progression. We developed and validated a fit-for-purpose disease-specific instrument to assess symptoms...

    Authors: Diana Rofail, Nadine McGale, Joseph Im, Alissa Rams, Krystian Przydzial, Vera Mastey, Sumathi Sivapalasingam and Anna J. Podolanczuk
    Citation: Journal of Patient-Reported Outcomes 2022 6:41
  44. Sanfilippo syndrome is a rare multisystem disease with no approved treatments. This study explores caregiver perspectives on the most impactful symptoms and patient-relevant clinical outcomes assessments. The ...

    Authors: Katherine Ackerman Porter, Cara O’Neill, Elise Drake, Sara M. Andrews, Kathleen Delaney, Samantha Parker, Maria L. Escolar, Stacey Montgomery, William Moon, Carolyn Worrall and Holly L. Peay
    Citation: Journal of Patient-Reported Outcomes 2022 6:40
  45. Transgender and non-binary (TGNB) individuals often experience gender dysphoria. TGNB individuals with gender dysphoria may undergo genital gender-affirming surgery including vaginoplasty, phalloplasty, or met...

    Authors: Nnenaya Agochukwu-Mmonu, Asa Radix, Lee Zhao, Danil Makarov, Rachel Bluebond-Langner, A. Mark Fendrick, Elijah Castle and Carolyn Berry
    Citation: Journal of Patient-Reported Outcomes 2022 6:39
  46. The U.S. Food and Drug Administration encourages the incorporation of the patient voice throughout the medical device total product lifecycle. This study examined the incorporation of patient-reported outcome ...

    Authors: Sophia T. Matts, Christina M. Webber, Fraser D. Bocell, Brittany Caldwell, Allen L. Chen and Michelle E. Tarver
    Citation: Journal of Patient-Reported Outcomes 2022 6:38
  47. Assess the feasibility of using goal attainment scaling (GAS) in care planning for older adults with complex needs. GAS is an individualized approach to goal setting and follow up using a quantified scale. To ...

    Authors: Catherine A. Clair, Shana F. Sandberg, Sarah H. Scholle, Jacqueline Willits, Lee A. Jennings and Erin R. Giovannetti
    Citation: Journal of Patient-Reported Outcomes 2022 6:37

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