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  1. The Primary Mitochondrial Myopathy Symptom Assessment (PMMSA) is a 10-item patient-reported outcome (PRO) measure designed to assess the severity of mitochondrial disease symptoms. Analyses of data from a clin...

    Authors: Chad Gwaltney, Jonathan Stokes, Anthony Aiudi, Iyar Mazar, Sarah Ollis, Emily Love, Amel Karaa, Carrie R. Houts, R. J. Wirth and Alan L. Shields
    Citation: Journal of Patient-Reported Outcomes 2022 6:129
  2. To understand our performance with respect to the collection and reporting of patient-reported outcome (PRO) measure (PROM) data, we examined the protocol content, data completeness and publication of PROs fro...

    Authors: Emma Lidington, Holly Hogan, Ann Gandolfi, Jane Lawrence, Eugenie Younger, Helena Cho, Clare Peckitt, Kabir Mohammed, Sheila Matharu, Lisa Scerri, Olga Husson, Susanne Cruickshank, Rachel Turner and Linda Wedlake
    Citation: Journal of Patient-Reported Outcomes 2022 6:128
  3. Previous research has shown that Roma people report worse health outcomes than the general population and suffer from a myriad of economic and social disadvantages. The objective of this study was to assess th...

    Authors: Tomos Robinson, Yemi Oluboyede, Luke Vale and Elena Olariu
    Citation: Journal of Patient-Reported Outcomes 2022 6:127
  4. Treatment options for metastatic renal cell carcinoma (mRCC) have improved over recent years. Various therapies for metastatic renal cell carcinoma are currently approved for first and successive lines. Having...

    Authors: Karin Kastrati, Viktoria Mathies, Anna P. Kipp and Jutta Huebner
    Citation: Journal of Patient-Reported Outcomes 2022 6:126
  5. Early intervention to reduce the impact of adverse events (AEs) may improve patients’ quality of life and enable optimal treatment duration.

    Authors: Sung-Hoo Hong, Ho Seok Chung, Ill-Young Seo, Tae Gyun Kwon, Hyeon Jeong, Jae-Il Chung, Seung Hyun Jeon, Jae Young Park, Hong Koo Ha, Byung-Ha Chung, Wan Song, Young-Joo Kim, Sang-Hee Kim, Jee-Sun Lee, Juneyoung Lee and Jinsoo Chung
    Citation: Journal of Patient-Reported Outcomes 2022 6:125
  6. Patient reported outcome measures (PROMs) may be useful for patients with benign liver tumours and cysts (BLTC) to evaluate the impact of treatment and/or guide shared decision making. Yet, a set of PROMs rele...

    Authors: Alicia Furumaya, Lynn E. Nooijen, Martijn P. D. Haring, Hedy A. van Oers, Marlou van Beneden, Belle V. van Rosmalen, R. Bart Takkenberg, Geert Kazemier, Marc G. Besselink, Vincent E. de Meijer and Joris I. Erdmann
    Citation: Journal of Patient-Reported Outcomes 2022 6:124
  7. Although there is extensive literature on the clinical benefits of COVID-19 vaccination, data on humanistic effects are limited. This study evaluated the impact of SARS-CoV-2 infection on symptoms, Health-Rela...

    Authors: Manuela Di Fusco, Xiaowu Sun, Mary M. Moran, Henriette Coetzer, Joann M. Zamparo, Laura Puzniak, Mary B. Alvarez, Ying P. Tabak and Joseph C. Cappelleri
    Citation: Journal of Patient-Reported Outcomes 2022 6:123
  8. Patient-reported experience measures (PREMs) assess quality-of-care from patients’ perspectives. PREMs can be used to enhance patient-centered care and facilitate patient engagement in care. With increasing qu...

    Authors: Chindhu Shunmuga Sundaram, Rachel Campbell, Angela Ju, Madeleine T. King and Claudia Rutherford
    Citation: Journal of Patient-Reported Outcomes 2022 6:122
  9. Pectus excavatum (PE) is the most common congenital chest wall deformity. It can have a negative effect in exercise tolerance. However, cosmetic features are the most frequent concerns in these patients. The P...

    Authors: Irene de Haro Jorge, Xavier Tarrado, Asteria Albert Cazalla, Natalie García-Smith, Alba Fernàndez-Candial and Carlos Salcedo-Gil
    Citation: Journal of Patient-Reported Outcomes 2022 6:121
  10. Patient engagement is an important tool for quality improvement (QI) and optimizing the uptake of research findings. The Plan-Do-Study-Act (PDSA) model is a QI tool that encourages ongoing evaluation of clinic...

    Authors: Catherine Stratton, Jennifer Tyrrell, Rachel Goren, Chitra Lalloo and Lisa Isaac
    Citation: Journal of Patient-Reported Outcomes 2022 6:120
  11. To quantitatively compare equivalence and compliance of patient-reported outcome (PRO) data collected via provisioned device (PD) versus bring your own device (BYOD).

    Authors: Stacie Hudgens, Louise Newton, Sonya Eremenco, Mabel Crescioni, Tara Symonds, Philip C. G. Griffiths, David S. Reasner, Bill Byrom, Paul O’Donohoe and Susan Vallow
    Citation: Journal of Patient-Reported Outcomes 2022 6:119
  12. Head and neck cancer (HNC) patients often undergo radiation therapy as part of their treatment. However, radiation therapy can have many side effects, including oral toxicities. Evaluating these toxicities is ...

    Authors: Naina Johnson, Janet Jaison Varghese, Krishna Sharan, Venkataraja U. Aithal and Barbara Murphy
    Citation: Journal of Patient-Reported Outcomes 2022 6:118
  13. There is limited information available on the impact of moderate asthma exacerbations, often called “asthma attacks” (i.e., those not requiring hospitalisation or treatment with systemic corticosteroids) on pa...

    Authors: Maggie Tabberer, Jane R. Wells, Dale Chandler, Linda Abetz-Webb, Shiyuan Zhang, Wilhelmine Meeraus, Andy Fowler and David Slade
    Citation: Journal of Patient-Reported Outcomes 2022 6:117
  14. The impact of the COVID-19 pandemic on psychological well-being will likely be long-lasting. Efforts directed towards monitoring the onset and progression of distress and mental health disorders are needed to ...

    Authors: Manraj N. Kaur, Elena Tsangaris, Tanujit Dey, Shelby Deibert, Janina Kueper, Maria Edelen and Andrea L. Pusic
    Citation: Journal of Patient-Reported Outcomes 2022 6:116
  15. Fabry disease is a rare X-linked lysosomal storage disorder. It is associated with physical distress and social challenges that may affect adults differently compared to pediatric patients. However, there is n...

    Authors: Yuta Koto, Wakana Yamashita, Yoko Lee, Nozomi Hadano, Chikara Kokubu and Norio Sakai
    Citation: Journal of Patient-Reported Outcomes 2022 6:115
  16. The Urgency Numeric Rating Scale (NRS) was developed as a content-valid single-item patient-reported outcome measure to assess severity of bowel urgency. Here, we evaluated the psychometric properties of the U...

    Authors: Marla C. Dubinsky, Mingyang Shan, Laure Delbecque, Trevor Lissoos, Theresa Hunter, Gale Harding, Larissa Stassek, David Andrae and James D. Lewis
    Citation: Journal of Patient-Reported Outcomes 2022 6:114
  17. The impact of the coronavirus disease 2019 (COVID) is worse among those with fewer financial resources, in jobs not amenable to remote work, and in denser living conditions. People of color are more likely to ...

    Authors: Carolyn E. Schwartz, Katrina Borowiec, Elijah Biletch and Bruce D. Rapkin
    Citation: Journal of Patient-Reported Outcomes 2022 6:113
  18. Making high-quality decisions when selecting treatment for lower urinary tract symptoms due to benign prostatic hyperplasia (LUTS/BPH) requires a shared decision-making approach. However, older people with low...

    Authors: Haidee Ngu, Shu Hui Neo, Eileen Yi Leng Koh, Henry Ho and Ngiap Chuan Tan
    Citation: Journal of Patient-Reported Outcomes 2022 6:112
  19. Patient-reported outcomes can measure health aspects that are meaningful to patients, such as ‘life engagement’ in major depressive disorder (MDD). Expert psychiatrists recently identified ten items from the I...

    Authors: François Therrien, Stine R. Meehan, Catherine Weiss, Jennifer Dine, T. Michelle Brown and Erin M. MacKenzie
    Citation: Journal of Patient-Reported Outcomes 2022 6:111
  20. Surgical site infection (SSI) and venous thromboembolism (VTE) are associated with high burden and cost and are considered largely preventable following total knee or hip arthroplasty (TKA, THA). The risk of d...

    Authors: Helen Badge, Tim Churches, Justine M. Naylor, Wei Xuan, Elizabeth Armstrong, Leeanne Gray, John Fletcher, Iain Gosbell, Chung-Wei Christine Lin and Ian A. Harris
    Citation: Journal of Patient-Reported Outcomes 2022 6:110
  21. The COVID-19 pandemic has impacted various aspects of people’s life and wellbeing around the world. This study aimed to examine the impact of the COVID-19 pandemic on health-related quality of life (HRQL), mea...

    Authors: Jiabi Wen, Fatima Al Sayah, Roland Simon, Markus Lahtinen, Jeffrey A. Johnson and Arto Ohinmaa
    Citation: Journal of Patient-Reported Outcomes 2022 6:109
  22. The Anal Cancer High-grade squamous intraepithelial lesions (HSIL) Outcomes Research (ANCHOR) Health-Related Symptom Index (A-HRSI) is a 25-item measure that assesses physical symptoms and impacts, and psychol...

    Authors: Thomas M. Atkinson, Kathleen A. Lynch, Jacqueline Vera, Nuria Mendoza Olivares, Andrew Webb, Lisa C. Diamond, Javier González, Erica I. Lubetkin, Gary Bucher, Isabella Rosa-Cunha, J. Michael Berry-Lawhorn, Rebecca Levine, David Aboulafia, Jeffrey Schouten, Susan M. Holland, David Cella…
    Citation: Journal of Patient-Reported Outcomes 2022 6:108
  23. A glaucoma-specific health-related quality of life (HRQoL) item bank (IB) and computerized adaptive testing (CAT) system relevant to Asian populations is not currently available. We aimed to develop content fo...

    Authors: Eva K. Fenwick, Belicia Lim, Ryan E. K. Man, Mani Baskaran, Monisha E. Nongpiur, Chelvin C. A. Sng, Jayant V. Iyer, Rahat Husain, Shamira A. Perera, Tina T. Wong, Jin Rong Low, Olivia Huang Shimin, Katherine Lun, Tin Aung and Ecosse L. Lamoureux
    Citation: Journal of Patient-Reported Outcomes 2022 6:107
  24. Alcohol consumption has changed during the COVID-19 pandemic yet the impacts on alcohol-related outcomes, and specifically health-related quality of life, are not completely known. Our objective was to assess ...

    Authors: Eve Wittenberg, Collin Labutte, Benjamin Thornburg, Abraham Gebreselassie, Carolina Barbosa and Jeremy W. Bray
    Citation: Journal of Patient-Reported Outcomes 2022 6:106
  25. While a substantial body of work postulates that adaptation (response-shift effects) may serve to hide intervention benefits, much of the research was conducted in observational studies, not randomized-control...

    Authors: Carolyn E. Schwartz, I.-Chan Huang, Gudrun Rohde and Richard L. Skolasky
    Citation: Journal of Patient-Reported Outcomes 2022 6:105
  26. To develop the novel multidimensional health perceptions questionnaire (MHPQ), a self-reported assessment of health perceptions inclusive of (1) individuals beliefs about the causes and consequences of health ...

    Authors: Shannon B. Juengst, Marlene Vega, Alexandra B. Holland, Susan Herrera, Robin T. Higashi, Maria Boix Braga, Alka Khera, Chung Lin Kew and Valeria Silva
    Citation: Journal of Patient-Reported Outcomes 2022 6:104
  27. Pain is common among torture survivors and refugees. Clear communication about one’s pain is vital to timely and precise diagnosis and treatment but is rarely recognized as a social determinant of health. We e...

    Authors: S. Megan Berthold, Richard Feinn, Angela Bermudez-Millan, Thomas Buckley, Orfeu M. Buxton, Sengly Kong, Theanvy Kuoch, Mary Scully, Tu Anh Ngo and Julie Wagner
    Citation: Journal of Patient-Reported Outcomes 2022 6:103
  28. In palliative oncology settings, electronic patient-reported outcome (PRO) assessment can play an important role in supporting clinical activities for clinicians and patients. This scoping review aims to map t...

    Authors: Letteria Consolo, Greta Castellini, Silvia Cilluffo, Ilaria Basile and Maura Lusignani
    Citation: Journal of Patient-Reported Outcomes 2022 6:102
  29. The independent healthcare sector in the UK collects PROMs for several surgical procedures, but implementation has been challenging. We aimed to understand the enablers and barriers to PROMs implementation in ...

    Authors: Michael Anderson, Emma Pitchforth, Andrew Vallance-Owen, Elias Mossialos, Paul Millner and Jon Fistein
    Citation: Journal of Patient-Reported Outcomes 2022 6:101
  30. The Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) scale has demonstrated good internal consistency and responsiveness to changes in clinical status among patients with ankylosing spondylit...

    Authors: David Cella, William R. Lenderking, Peter Chongpinitchai, Andrew G. Bushmakin, Oluwaseyi Dina, Lisy Wang, Joseph C. Cappelleri and Victoria Navarro-Compán
    Citation: Journal of Patient-Reported Outcomes 2022 6:100
  31. Patient-reported outcome (PRO) measures may be used in telehealth for the clinical assessment of mental health and diabetes distress, which are important aspects in diabetes care, but valid and reliable instru...

    Authors: Liv Marit Valen Schougaard, Tinne Laurberg, Kirsten Lomborg, Troels Krarup Hansen, Niels Henrik Hjollund and Annesofie Lunde Jensen
    Citation: Journal of Patient-Reported Outcomes 2022 6:99
  32. This study aimed to translate and validate an Arabic version of the Functional Assessment of Cancer Therapy Head and Neck Scale (FACT-H&N, v-4) for use among Sudanese oral cancer patients.

    Authors: M. El Sheikh, A. Suleiman, A. Satti and E. M. O’Sullivan
    Citation: Journal of Patient-Reported Outcomes 2022 6:98
  33. Aspirations refer to wishes, ways of defining quality of life (QOL), and life goals. Living with chronic illness likely impacts a person’s life aspirations. Duchenne Muscular Dystrophy (DMD) is an inherited di...

    Authors: Carolyn E. Schwartz, Elijah Biletch, Richard B. B. Stuart and Bruce D. Rapkin
    Citation: Journal of Patient-Reported Outcomes 2022 6:97
  34. The inevitable and progressive loss of independence in Duchenne Muscular Dystrophy (DMD) patients may have an impact on their siblings’ life aspirations. The present cross-sectional case-control study investig...

    Authors: Carolyn E. Schwartz, Elijah Biletch, Richard B. B. Stuart and Bruce D. Rapkin
    Citation: Journal of Patient-Reported Outcomes 2022 6:96
  35. Patient-reported outcome measures (PROMs) are an extensively used tool to assess and improve the quality of healthcare services. PROMs can be related to individual demographic and clinical characteristics in p...

    Authors: Davide Golinelli, Alberto Grassi, Dario Tedesco, Francesco Sanmarchi, Simona Rosa, Paola Rucci, Marilina Amabile, Monica Cosentino, Barbara Bordini, Maria Pia Fantini and Stefano Zaffagnini
    Citation: Journal of Patient-Reported Outcomes 2022 6:95
  36. Rehabilitation therapy during hospitalization is effective in improving activities of daily living (ADL) and physical function in patients with brain tumors. However, there are few studies on the effect of reh...

    Authors: Takahiro Watanabe, Shinichi Noto, Manabu Natsumeda, Shinji Kimura, Satoshi Tabata, Fumie Ikarashi, Mayuko Takano, Yoshihiro Tsukamoto and Makoto Oishi
    Citation: Journal of Patient-Reported Outcomes 2022 6:94
  37. Total hip arthroplasty (THA) is a successful procedure that provides pain relief, restores function, and improves quality of life (QOL) for patients with advanced arthritis in their hip joint. To date, little ...

    Authors: Carolyn E. Schwartz, Bruce D. Rapkin, Jhase Sniderman and Joel A. Finkelstein
    Citation: Journal of Patient-Reported Outcomes 2022 6:93
  38. In Canada, the prevalence of mental health challenges is highest in young people aged 12–24. Mental health challenges frequently cause marked functional impairment. Despite this, we are unaware of any existing...

    Authors: Skye Barbic, Emily Brooks, Natalia Lassak, Mo Khaleghi, Marco Zenone, Nikki Ow, Adelena Leon and Steve Mathias
    Citation: Journal of Patient-Reported Outcomes 2022 6:92
  39. Many patient reported outcome measures (PROMs) generate single number index scores that summarise responses to different questions within a questionnaire. Although these are valuable as unambiguous indicators ...

    Authors: David William Parkin, Bronwyn Do Rego and Rhonda Shaw
    Citation: Journal of Patient-Reported Outcomes 2022 6:91
  40. Patient-reported outcome measures are important in person-centered care, providing valuable information about patients’ experiences. Disease-specific questionnaires add important information about a certain di...

    Authors: Ulla Walfridsson, Håkan Walfridsson, Melissa E. Middeldorp, Prashanthan Sanders and Kristofer Årestedt
    Citation: Journal of Patient-Reported Outcomes 2022 6:90
  41. Multiple sclerosis (MS) is a chronic progressive neurological disease that influences an individual's physical, mental, emotional, and social functioning, otherwise known as health-related quality of life (HRQ...

    Authors: Erin Faraclas, Angela Merlo, Jeff Lynn and Jeffery D. Lau
    Citation: Journal of Patient-Reported Outcomes 2022 6:89
  42. Patient-reported outcome measures (PROMs) play an important role in promoting and supporting patient and family-centered care. Implementing interventions like PROMs in routine clinical care require key stakeho...

    Authors: Sumedh Bele, Sarah Rabi, Muning Zhang, Elizabeth Oddone Paolucci, David W. Johnson, Hude Quan and Maria J. Santana
    Citation: Journal of Patient-Reported Outcomes 2022 6:88
  43. The assessment of patients’ medication literacy skills (i.e., abilities to access, comprehend and interact with medication-related information) is an important step in assisting clinicians to plan for appropri...

    Authors: Jenny Gentizon, Mapi Fleury, Eric Pilet, Christophe Büla and Cedric Mabire
    Citation: Journal of Patient-Reported Outcomes 2022 6:87
  44. 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
  45. 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
  46. 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
  47. 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
  48. 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
  49. 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
  50. 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

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