Review
Ophthalmology
Jesse Panthagani, Charles O'Donovan, Olalekan Lee Aiyegbusi, Xiaoxuan Liu, Susan Bayliss, Melanie Calvert, Konrad Pesudovs, Alastair K. Denniston, David J. Moore, Tasanee Braithwaite
Summary: This study aims to search for and critically evaluate the psychometric quality of patient-reported outcome measures (PROMs) developed or validated in optic neuritis. The results indicate that there is still a need for the development and improvement of PROMs applicable to optic neuritis.
Review
Oncology
David Riedl, Maria Rothmund, Anne-Sophie Darlington, Samantha Sodergren, Roman Crazzolara, Teresa de Rojas
Summary: This study found that the use of patient-reported outcomes (PROs) is extremely rare in pediatric oncology clinical trials, with only 8.2% of trials using PROs as endpoints and .6% as the primary endpoint. Despite recommendations from regulatory agencies, there is a significant gap between the recommended and actual use of PROs, with only 20.3% of closed studies publishing their results. More efforts should be made to promote the implementation of PROs in pediatric trials to ensure patient-centered research and treatments.
EUROPEAN JOURNAL OF CANCER
(2021)
Article
Orthopedics
Melissa N. Orr, Alison K. Klika, Joel J. Gagnier, Mohit Bhandari, Nicolas S. Piuzzi
Summary: The shift to a value-driven health-care model has increased the importance of prospective collection of patient-reported outcome measures (PROMs) in assessing the success of orthopaedic surgery and patient satisfaction. While progress has been made in utilizing PROM data, there is still a need for clear parameters for setting clinically important PROM thresholds. The commonly used method of reporting PROMs can overestimate treatment effects and fail to capture distinct populations that fall below clinically relevant thresholds.
JOURNAL OF BONE AND JOINT SURGERY-AMERICAN VOLUME
(2021)
Article
Clinical Neurology
Anat Mirelman, Andrew Siderowf, Lana Chahine
Summary: This study reviewed the available literature on the subtle motor features in the prodromal phase of Parkinson's disease (PD) and aimed to provide insights for possible clinical trials. The findings revealed significant progress in understanding the evolution of motor features before PD diagnosis. Digital measures hold promise for improving measurement precision and can be used outside the clinic in naturalistic environments. Future research should focus on advancing digital sensor technology and analysis, as well as developing methods for clinical diagnosis of PD in a clinical trial context.
Article
Orthopedics
Patricia D. Franklin, Christina P. Bond, Nan E. Rothrock, David Cella
Summary: With the importance of PROMs in real-world evidence, best practices for capture and integration are yet to be defined. Successful PROM implementation strategies can guide health systems in informing clinical care and quality improvement activities.
JOURNAL OF BONE AND JOINT SURGERY-AMERICAN VOLUME
(2021)
Editorial Material
Health Care Sciences & Services
Theresa M. Coles, Adrian F. Hernandez, Bryce B. Reeve, Karon Cook, Michael C. Edwards, Marc Boutin, Elizabeth Bush, Arnold Degboe, Lothar Roessig, Amy Rudolph, Pauline McNulty, Nikunj Patel, Trish Kay-Mugford, Margaret Vernon, Michael Woloschak, Gustavo Buchele, John A. Spertus, Matthew T. Roe, Denise Bury, Kevin Weinfurt
Summary: Stakeholders discussed challenges and solutions for integrating patient-reported outcomes (PROs) into clinical trials, identifying a lack of common understanding on the evidence necessary to support patient-reported outcome measures (PROMs) as a key challenge. They envisaged a future where validity arguments for PROMs would be publicly available through a repository.
HEALTH AND QUALITY OF LIFE OUTCOMES
(2021)
Article
Orthopedics
Robin R. Whitebird, Leif Solberg, Jeanette Y. Ziegenfuss, Christine K. Norton, Ella A. Chrenka, Marc Swiontkowski, Megan Reams, Elizabeth S. Grossman
Summary: This study investigated the use of PROMs in clinical care and found that logistical and perceptual barriers contribute to the underuse of PROM scores. Surgeons prefer discussing individual outcomes identified as important by patients rather than PROM scores for others. To facilitate PROM use, it is suggested to directly push PROM scores to physicians and use easily understandable graphical displays.
CLINICAL ORTHOPAEDICS AND RELATED RESEARCH
(2022)
Letter
Multidisciplinary Sciences
Eduardo F. Motti
Summary: This is a letter to the editor.
Article
Surgery
Arturo J. Rios-Diaz, Shelby L. Nathan, Jessica R. Cunning, Geoffrey M. Kozak, Charles A. Messa, Cutler B. Whitely, Harrison D. Davis, Sheri Thrippleton, Robyn B. Broach, John P. Fischer
Summary: The authors aimed to implement patient-reported outcome (PRO) surveys in surgical practice and identify principles for successful implementation. They found that successful implementation can be achieved by optimizing workflow, selecting appropriate patients, engaging staff, and integrating electronic surveys. Implementation did not have any adverse effects on patient satisfaction or workflow.
PLASTIC AND RECONSTRUCTIVE SURGERY
(2023)
Article
Clinical Neurology
Pamela L. Wolters, Ana-Maria Vranceanu, Heather L. Thompson, Staci Martin, Vanessa L. Merker, Andrea Baldwin, Carolina Barnett, Kimberley S. Koetsier, Cynthia M. Hingtgen, Christopher J. Funes, James H. Tonsgard, Elizabeth K. Schorry, Taryn Allen, Taylor Smith, Barbara Franklin, Stephanie Reeve, REiNS Int Collaboration
Summary: The study reviewed and recommended patient-reported outcome measures for assessing multidimensional domains of quality of life for patients with neurofibromatosis types 1, 2, and schwannomatosis, with a focus on generic and disease-specific tools for use in clinical trials.
Article
Clinical Neurology
Pamela L. Wolters, Ana-Maria Vranceanu, Heather L. Thompson, Staci Martin, Vanessa L. Merker, Andrea Baldwin, Carolina Barnett, Kimberley S. Koetsier, Cynthia M. Hingtgen, Christopher J. Funes, James H. Tonsgard, Elizabeth K. Schorry, Taryn Allen, Taylor Smith, Barbara Franklin, Stephanie Reeve
Summary: The REiNS Collaboration recommends the use of generic and disease-specific PRO measures to assess multidimensional domains of QoL for NF clinical trials in children and adults. Further research is needed to evaluate the effectiveness of these measures in both medical and psychosocial trials.
Review
Cardiac & Cardiovascular Systems
Faiez Zannad, Jacqueline Alikhaani, Sadegh Alikhaani, Javed Butler, Jason Gordon, Klaus Jensen, Rani Khatib, Lorenzo Mantovani, Robin Martinez, Wanda F. Moore, Masahiro Murakami, Lothar Roessig, Norman Stockbridge, Harriette G. C. Van Spall, Clyde Yancy, John A. Spertus
Summary: There are numerous consequences of heart failure (HF), such as symptoms, impaired health-related quality of life (HRQoL), and physical and social limitations. Patient-reported outcomes (PROs) can effectively quantify patients' experiences of the disease and its treatment. Improving the use of PROs in HF trials, regulatory decisions, and patient care is crucial, and should involve patient, family, and caregiver involvement.
EUROPEAN JOURNAL OF HEART FAILURE
(2023)
Article
Oncology
Robert L. Coleman, J. Thaddeus Beck, Joaquina C. Baranda, Ira Jacobs, Karen E. Smoyer, Lauren J. Lee, Zemfira Askerova, Justin McGinnis, Apar Kishor Ganti
Summary: Although PRO usage in phase I oncology clinical trials is still relatively low, there is a trend of increasing usage over time. The most common types of PRO measures were unspecified, tumor-specific, and generic cancer, with a need for more precise reporting and standardization.
Article
Orthopedics
Catherine H. Maclean, Vinicius C. Antao, Amy S. Chin, Alexander S. Mclawhorn
Summary: The intersection of big data and artificial intelligence has the potential to improve patient health outcomes in the healthcare industry, but the adoption of these technologies has been slow. With the increasing availability of patient-reported outcome measures (PROMs) within electronic health records, big data analysis can be used to establish norms, evaluate data distribution, and improve individual and population health.
JOURNAL OF THE AMERICAN ACADEMY OF ORTHOPAEDIC SURGEONS
(2023)
Article
Pediatrics
Hadley Stevens Smith, Bart S. S. Ferket, Bruce D. D. Gelb, Lucia Hindorff, Kathleen D. D. Ferar, Mary E. E. Norton, Nuriye Sahin-Hodoglugil, Anne Slavotinek, Kristen Hasmiller Lich, Jonathan S. S. Berg, Heidi V. V. Russell
Summary: This study examined the actions taken by parents of children who received genomic sequencing (GS) results. The findings indicated that most parents discussed the results with clinicians and followed their recommendations. However, GS results did not result in a significant increase in the amount of care received by the children.