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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. Visual complaints among people with multiple sclerosis (pwMS) are common, but often difficult to recognize. The Screening Visual Complaints questionnaire (SVCq) has been developed to screen for visual complain...

    Authors: Fleur E. van der Feen, Gera A. de Haan, Iris van der Lijn, Anselm B. M. Fuermaier, Thea J. Heersema, Jan F. Meilof and Joost Heutink
    Citation: Journal of Patient-Reported Outcomes 2022 6:36
  19. The value of patient and public involvement and engagement (PPIE) within the development and refinement of outcome measures is becoming increasingly recognized. The aim of this paper is to provide an overview ...

    Authors: Jill Carlton, Tessa Peasgood, Clara Mukuria, Julie Johnson, Margaret Ogden and Wade Tovey
    Citation: Journal of Patient-Reported Outcomes 2022 6:35
  20. The Patient-Reported Outcomes Information System (PROMIS®) is more and more extensively being used in medical literature in patients with an orthopedic fracture. Yet, many articles studied heterogeneous groups...

    Authors: Thymen Houwen, Leonie de Munter, Koen W. W. Lansink and Mariska A. C. de Jongh
    Citation: Journal of Patient-Reported Outcomes 2022 6:34
  21. Regulatory bodies recommend that outcome measures used in Alzheimer’s disease (AD) clinical trials capture clinically meaningful changes for the trial participant. However, commonly used outcome measures do no...

    Authors: S. Saunders, S. Sheehan, G. Muniz-Terrera, S. Luz and C. W. Ritchie
    Citation: Journal of Patient-Reported Outcomes 2022 6:33
  22. The collection of patient-reported outcome measures (PROMs) following arthroplasty is common. PROMs data collection programs seek to maximise completeness in order to minimise selection bias and optimise repre...

    Authors: Ian A. Harris, Yi Peng, Kara Cashman, Ilana Ackerman, Emma Heath, Neville Rowden and Stephen E. Graves
    Citation: Journal of Patient-Reported Outcomes 2022 6:32
  23. Bowel urgency, the sudden or immediate need to have a bowel movement, is a common, bothersome and disruptive symptom of ulcerative colitis (UC). UC treatment goals include control of urgency; however, it is no...

    Authors: Marla C. Dubinsky, Peter M. Irving, Remo Panaccione, April N. Naegeli, Alison Potts-Bleakman, Vipin Arora, Mingyang Shan and Simon Travis
    Citation: Journal of Patient-Reported Outcomes 2022 6:31
  24. The current service metrics used to evaluate quality in emergency care do not account for specific healthcare outcome goals for older people living with frailty. These have previously been classified under the...

    Authors: James David van Oppen, Abdullah Alshibani, Timothy John Coats, Blair Graham, Patricia Holch, Jagruti Lalseta, Nicola Mackintosh, Vivien Richardson, Peter Riley, Jose M. Valderas and Simon Paul Conroy
    Citation: Journal of Patient-Reported Outcomes 2022 6:30
  25. Young people in different healthcare settings are positive about using electronic patient-reported outcomes (ePROs), which are meant to increase the effectiveness and safety of interventions from the patient’s...

    Authors: Petra V. Lostelius, Magdalena Mattebo, Anne Söderlund, Åsa Revenäs and Eva Thors Adolfsson
    Citation: Journal of Patient-Reported Outcomes 2022 6:29
  26. Over a third of people living with HIV (PLHIV) have suboptimal adherence to antiretroviral therapy (ART). Measures of barriers to ART adherence often lack comprehensiveness. To help manage ART adherence barrie...

    Authors: Kim Engler, Serge Vicente, Kedar K. V. Mate, David Lessard, Sara Ahmed and Bertrand Lebouché
    Citation: Journal of Patient-Reported Outcomes 2022 6:28
  27. People living with HIV (PLWH) are generally known to suffer from a lower quality of life compared to the one of general population, but still very few is known about the self-perception of quality of life when...

    Authors: C. Seguiti, P. F. Salvo, E. Di Stasio, S. Lamonica, A. L. Fedele, S. Manfrida, N. Ciccarelli, B. Corvari, C. De Luca, L. Tartaglione, D. Pitocco, R. Cauda and A. Cingolani
    Citation: Journal of Patient-Reported Outcomes 2022 6:27
  28. We aimed to create a questionnaire to assess the health-related quality of life including functioning, symptoms, and general health status of adult patients with current or previous COVID-19. Here, we report o...

    Authors: Cecilie Delphin Amdal, Katherine Taylor, Dagmara Kuliś, Ragnhild Sørum Falk, Andrew Bottomley, Juan Ignacio Arraras, James Harold Barte, Anne Sophie Darlington, Kristin Hofsø, Bernard Holzner, Nina Marie Høyning Jørgensen, Melissa Paulita Mariano, Madeline Pe, Claire Piccinin, Nicola Riccetti, Melanie Schranz…
    Citation: Journal of Patient-Reported Outcomes 2022 6:26
  29. Childhood asthma is an important unmet need. To date, patient-reported outcome measures (PROMs) for children with asthma have used a combination of caregiver or proxy-reported and self-reported measures. No co...

    Authors: Marci Clark, Carla Romano, Oyebimpe Olayinka-Amao, Diane Whalley, Rebecca Crawford, Purnima Pathak, Caterina Brindicci, Kristin Garg, Kattayoun Kordy, Francois Everhard, Francesco Patalano, Zach Roesler, Thomas Sutton, Oskar Göransson, Ross Landles, Christel Naujoks…
    Citation: Journal of Patient-Reported Outcomes 2022 6:25
  30. Immune thrombocytopenia (ITP) is primarily considered a bleeding disorder; its impact on patients’ health-related quality of life (HRQoL) is under-recognized. We aimed to assess how aligned patient and physici...

    Authors: Prantar Chakrabarti, Biju George, Chandrakala Shanmukhaiah, Lalit Mohan Sharma, Shashank Udupi and Waleed Ghanima
    Citation: Journal of Patient-Reported Outcomes 2022 6:24
  31. The aim of this systematic review was to describe the prognostic value of patient-reported outcome measures (PROMs) in adult heart-transplant (HT) patients.

    Authors: Bernardo Perez Villa, Sultan Alotaibi, Nicolas Brozzi, Kurt P. Spindler, Jose Navia and Jaime Hernandez-Montfort
    Citation: Journal of Patient-Reported Outcomes 2022 6:23
  32. In our companion paper, we addressed the interplay between caregiver impact, out-of-pocket expenditures, and Duchenne Muscular Dystrophy (DMD) disability. We found that DMD caregiver impact could be characteri...

    Authors: Carolyn E. Schwartz, Roland B. Stark, Katrina Borowiec and Bruce D. Rapkin
    Citation: Journal of Patient-Reported Outcomes 2022 6:22
  33. Providing caregiving support to people with Duchenne muscular dystrophy (DMD) is challenging, beginning in early childhood, and continuing through the progression of multidimensional disability. This study add...

    Authors: Carolyn E. Schwartz, Roland B. Stark, Katrina Borowiec, Ivana F. Audhya and Katherine L. Gooch
    Citation: Journal of Patient-Reported Outcomes 2022 6:21
  34. Patient-reported outcomes (PROs) are used increasingly in routine clinical care and inform policies, reimbursements, and quality improvement. Less is known regarding PRO implementation in routine clinical care...

    Authors: Colby J. Hyland, Ruby Guo, Ravi Dhawan, Manraj N. Kaur, Paul A. Bain, Maria O. Edelen and Andrea L. Pusic
    Citation: Journal of Patient-Reported Outcomes 2022 6:20
  35. The use of Patient-Reported Outcome Measures (PROMs) for individual patient management within clinical practice is becoming increasingly important. New evidence about graphic visualization formats for PROMs sc...

    Authors: Elaine A. C. Albers, Itske Fraterman, Iris Walraven, Erica Wilthagen, Sanne B. Schagen, Iris M. van der Ploeg, Michel W. J. M. Wouters, Lonneke V. van de Poll-Franse and Kelly M. de Ligt
    Citation: Journal of Patient-Reported Outcomes 2022 6:18
  36. Parkinson’s disease (PD) is a chronic, progressive illness with a profound impact on the health-related quality of life (HRQoL). Disease-specific patient-reported HRQoL measures, such as PDQ-39 and its short v...

    Authors: Pantelis Stathis and George Papadopoulos
    Citation: Journal of Patient-Reported Outcomes 2022 6:17
  37. Breast cancer can be a significant challenge for those affected. Knowledge of physical function, social-emotional challenges, and perceived cognitive function based on the cancer treatment regimens may help to...

    Authors: Niklas Paul Grusdat, Alexander Stäuber, Marion Tolkmitt, Jens Schnabel, Birgit Schubotz, Peter Richard Wright, Marc Heydenreich, Dirk-Henrik Zermann and Henry Schulz
    Citation: Journal of Patient-Reported Outcomes 2022 6:16
  38. Diagnostic imaging techniques have to be selected for their accuracy, efficiency, cost-efficiency, and impact on outcome. But beyond that, the choice of non-invasive cardiovascular imaging tests for diagnosing...

    Authors: Thomas Bertrand, Gillian Bartlett-Esquilant, Kady Fischer and Matthias G. Friedrich
    Citation: Journal of Patient-Reported Outcomes 2022 6:15
  39. In this article, we report the cultural adaption and translation of the Integrated Palliative Care Outcome Scale for People with Dementia (IPOS-Dem) into a Swiss-German easy language version for proxy assessme...

    Authors: Frank Spichiger, Anita Keller Senn, Thomas Volken, Philip Larkin and Andrea Koppitz
    Citation: Journal of Patient-Reported Outcomes 2022 6:14
  40. The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is...

    Authors: A. Fuchsia Howard, María-José Torrejón, Kelsey Lynch, Scott M. Beck, Sally Thorne, Leah Lambert, Antony Porcino, Mary A. De Vera, Janine M. Davies, Jonathan Avery, Angela C. Wolff, Melanie McDonald, Joyce W. K. Lee, Penelope Hedges, Mary T. Kelly and Michael McKenzie
    Citation: Journal of Patient-Reported Outcomes 2022 6:13
  41. The purposes of this investigation were to (1) identify the domains of health-related quality of life most impacted in people with RRMS, (2) compare the health-related QOL in people with RRMS to general popula...

    Authors: Erin Faraclas, Jeff Lynn, Jeffery D. Lau and Angela Merlo
    Citation: Journal of Patient-Reported Outcomes 2022 6:12
  42. Fractures of lower extremities are common trauma-related injuries, and have major impact on patients' functional status. A frequently used Patient-Reported Outcome Measure (PROM) to evaluate patients’ function...

    Authors: Julia Ratter, Sylvia Pellekooren, Suzanne Wiertsema, Johanna M. van Dongen, Edwin Geleijn, Vincent de Groot, Frank W. Bloemers, Elise Jansma and Raymond W. J. G. Ostelo
    Citation: Journal of Patient-Reported Outcomes 2022 6:11
  43. PedsQL Infant Scales (PedsQL-I) are used to assess parent-reported health-related quality of life for children younger than 2 years. We determined the feasibility, reliability, and validity of the Japanese ver...

    Authors: Iori Sato, Takafumi Soejima, Mari Ikeda, Kyoko Kobayashi, Ami Setoyama and Kiyoko Kamibeppu
    Citation: Journal of Patient-Reported Outcomes 2022 6:10
  44. Under a societal perspective, disease and treatment attributes that the general public deem important should be considered within value frameworks. The objective was to investigate how members of the general p...

    Authors: Shelagh M. Szabo, Ivana F. Audhya, David Feeny, Peter Neumann, Daniel C. Malone and Katherine L. Gooch
    Citation: Journal of Patient-Reported Outcomes 2022 6:9
  45. In a randomized controlled trial, we previously investigated if melanoma patients receiving checkpoint inhibitors had fewer severe immune-related adverse events (irAEs) when they reported symptoms using electr...

    Authors: Lærke K. Tolstrup, Helle Pappot, Lars Bastholt, Sören Möller and Karin B. Dieperink
    Citation: Journal of Patient-Reported Outcomes 2022 6:8
  46. The 2009 Food and Drug Administration (FDA) patient-reported outcome (PRO) guidance outlines characteristics of rigorous PRO-measure development. There are a number of widely used PRO measures for Systemic Lup...

    Authors: Kayleigh R. Majercak, Eleanor M. Perfetto and Ester Villalonga-Olives
    Citation: Journal of Patient-Reported Outcomes 2022 6:7
  47. The Kansas City Cardiomyopathy Questionnaire (KCCQ) is a Patient-Reported Outcome Measure (PROM) used to evaluate the health status of patients with heart failure (HF) but has predominantly been tested in sett...

    Authors: Jonathan Davis, Kristan Olazo, Maribel Sierra, Michelle E. Tarver, Brittany Caldwell, Anindita Saha, Sarah Lisker, Courtney Lyles and Urmimala Sarkar
    Citation: Journal of Patient-Reported Outcomes 2022 6:6
  48. Endometriosis is a chronic disorder of the female reproductive system characterized by debilitating symptoms, particularly endometriosis-related pain (ERP). Patient-reported outcome (PRO) measures of symptoms ...

    Authors: Yanfen Guan, Allison M. Nguyen, Samantha Wratten, Sharan Randhawa, Jessica Weaver, Felipe Arbelaez, Arnaud Fauconnier and Charlotte Panter
    Citation: Journal of Patient-Reported Outcomes 2022 6:5

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