Review
Endocrinology & Metabolism
Per Karkov Cramon, Jakob Bue Bjorner, Mogens Groenvold, Victor Brun Boesen, Steen Joop Bonnema, Laszlo Hegedus, Ulla Feldt-Rasmussen, Ase Krogh Rasmussen, Torquil Watt
Summary: Patient-reported outcomes (PROs) are increasingly used in clinical practice to improve clinical care. However, successful implementation of PROs requires addressing barriers and challenges.
FRONTIERS IN ENDOCRINOLOGY
(2022)
Article
Cardiac & Cardiovascular Systems
Onkar Khullar, Aubriana Perez, Meredith Dixon, Jose N. Binongo, Manu S. Sancheti, Allan Pickens, Theresa Gillespie, Seth D. Force, Felix G. Fernandez
Summary: This study examined the success of routine patient-reported outcomes (PROs) assessment in an academic-based thoracic surgery practice. Results showed that out of 9725 thoracic surgery office visits, PROs data were obtained in 6899 visits from 3551 patients. The overall questionnaire completion rate was 65.7%, with a significant decline in April 2020. Rating: 8 out of 10.
ANNALS OF THORACIC SURGERY
(2023)
Review
Medicine, General & Internal
Rakhshan Kamran, Liam Jackman, Cynthia Chan, Yujin Suk, Chloe Jacklin, Eve Deck, Nina Wietek, Melissa Stepney, Conrad Harrison, Abhilash Jain, Jeremy Rodrigues
Summary: This systematic review identified barriers and enablers of patient-reported outcome measures (PROMs) implementation in gender-affirming care. A total of 205 different PROMs were used, but there was inconsistency in PROM implementation and a lack of evidence-based approaches. Key barriers included issues with evidence strength and quality of PROMs, while key enablers included using validated PROMs tailored for gender-affirming care and engaging stakeholders in the implementation process.
Review
Medicine, General & Internal
Alba Nicolas-Boluda, Anne Oppenheimer, Jerome Bouaziz, Arnaud Fauconnier
Summary: Patient Reported Outcome Measures (PROM) allow capturing patients' perspectives on their condition in the context of endometriosis care. Despite their extensive use in research and clinical trials, PROMs are rarely used in clinical practice. The development of digital tools can help facilitate the integration of PROMs into routine endometriosis care, improving patient-centered communication and quality of life.
JOURNAL OF CLINICAL MEDICINE
(2021)
Article
Orthopedics
Prakash Jayakumar, Paige Livingston Lopez, Richard Mather III
Summary: Patient-reported outcome (PRO) measures provide a systematic way to incorporate patient perspectives of their health and wellbeing into treatment and monitor progress. This article offers guidance on implementing a successful PRO program, addressing various barriers and utilizing facilitators.
JOURNAL OF THE AMERICAN ACADEMY OF ORTHOPAEDIC SURGEONS
(2023)
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)
Review
Urology & Nephrology
Udit Singhal, Ted A. Skolarus, John L. Gore, Matthew G. Parry, Ronald C. Chen, Julie Nossiter, Alan Paniagua-Cruz, Arvin K. George, Paul Cathcart, Jan van der Meulen, Daniela A. Wittmann
Summary: Patient-reported outcome measures (PROMs) are important for understanding the adverse effects of prostate cancer treatment and have been widely used in clinical practice. Improvements in data collection, interpretation, standardization and reporting are crucial for the continued implementation of PROM instruments in prostate cancer care.
NATURE REVIEWS UROLOGY
(2022)
Article
Health Care Sciences & Services
Anne Louise Depla, Marije Lamain-de Ruiter, Lyzette Laureij, Hiske E. Ernst-Smelt, Jan A. Hazelzet, Arie Franx, Mireille N. Bekker, BUZZ Project Team
Summary: This study reports the initial outcomes, experiences, and practice insights of implementing the PCB set in clinical practice in the Netherlands. The results indicate that the PCB set is a useful tool to assess patient-reported outcomes and experiences that need to be addressed throughout pregnancy and childbirth, providing opportunities to improve and personalize perinatal care.
JOURNAL OF MEDICAL INTERNET RESEARCH
(2022)
Article
Rehabilitation
Kurt Kroenke, Timothy A. Miksch, Aaron C. Spaulding, Gina L. Mazza, Christopher C. DeStephano, Shehzad K. Niazi, Allie J. Canoy Illies, Mohamad Bydon, Paull Novotny, Anshit Goyal, Minji K. Lee
Summary: This overview addresses key factors and practical decisions related to the use of patient-reported outcome (PRO) measures, as well as highlights clinical decision support issues.
ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION
(2022)
Article
Rehabilitation
Laura Jolliffe, Nadine E. Andrew, Velandai Srikanth, Richard Beare, Kate E. Noeske, David A. Snowdon
Summary: This study aims to explore staff perceptions of barriers and enablers towards implementing patient-reported outcome measures (PROMs) in community rehabilitation and develop an implementation approach. The results highlight the importance of automating processes, engaging site champions, routinely reporting, and using PROM data to inform service provision.
DISABILITY AND REHABILITATION
(2023)
Article
Orthopedics
Brocha Z. Z. Stern, Patricia D. D. Franklin, Lauren M. M. Shapiro, Saad B. B. Chaudhary, Robin N. N. Kamal, Jashvant Poeran
Summary: The clinical use of patient-reported outcome measures (PROMs) in musculoskeletal care is expanding. However, careful implementation is necessary to avoid disparities in care processes or outcomes. Balancing standardization and tailored strategies can optimize care for all patients.
JOURNAL OF BONE AND JOINT SURGERY-AMERICAN VOLUME
(2023)
Review
Health Care Sciences & Services
Hannah May Scott, Debbie Braybrook, Daney Haroardottir, Clare Ellis-Smith, Richard Harding, C POS
Summary: This systematic review examines the determinants, strategies, and mechanisms that influence the implementation of person-centred outcome measures (PCOMs) in paediatric healthcare practice. The review identified several barriers to implementation including staff lack of knowledge, complexity of using the measure, and a lack of resources. Facilitating factors include staff and family education, and the benefits of using PCOMs on patient care and outcomes. The resulting logic model presents strategies to reduce barriers and promote the use of PCOMs in practice.
HEALTH AND QUALITY OF LIFE OUTCOMES
(2023)
Review
Medicine, General & Internal
Zachary Blood, Anh Tran, Lauren Caleo, Robyn Saw, Mbathio Dieng, Mark Shackleton, H. Peter Soyer, Chris Arnold, Graham J. Mann, Rachael L. Morton
Summary: This systematic review identified PROMs and PREMs used in clinical quality registries for cutaneous melanoma patients, showing that they can enhance care transparency, quality assessment, and research, yet challenges such as resource burden and collection bias may limit their generalizability.
Editorial Material
Oncology
Derek K. Smith
Summary: This paper presents the lesser-understood implications of using patient-reported outcome measures in clinical research. It demonstrates that the assumptions of common mean-based approaches are often violated and shows the reduction in statistical power due to subjective discretization. It concludes that PRO-based studies must be conscientiously designed and analyses should consider using ordinal statistical models.
SUPPORTIVE CARE IN CANCER
(2023)
Review
Dermatology
Eric Xia, Sara J. Li, Lara Drake, Sophia Reyes-Hadsall, Carol Mita, Aaron M. Drucker, Arash Mostaghimi
Summary: Despite progress, there is still a lack of standardization in the use of outcome measures for AA. A scoping review revealed heterogeneity in the outcome measures used in assessing and treating AA. Only a small number of ClinROMs were frequently used in research studies and clinical trials, indicating the need for consensus and standardization in this field.
JOURNAL OF INVESTIGATIVE DERMATOLOGY
(2023)
Article
Oncology
Natasha A. Roberts, Annette Cubitt, Dianne Lindsay, Kimberley Bury, Jacqueline Dixon, Chantal Gebbie, Cheryl-Ann Hawkins, Taylor Major, Sue Jenkins-Marsh, Bernadette Morris-Smith, Melanie Poxton, Sue Richmond, Delaine Smith, Adam Stoneley, Darshit A. Thaker, Elizabeth Wilson, Anne Woollett, Craig Underhill, Sabe Sabesan
Summary: The pilot of the Australasian Teletrial Model in Australia aimed to extend the reach of clinical trials for oncology patients through telemedicine. Experts shared their learnings from implementation during a workshop, identifying four key themes. Future directions include streamlining regulatory processes, improving implementation and monitoring, and expanding networks in Australia.
ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY
(2022)
Article
Health Care Sciences & Services
Kimberly Manalili, Fartoon M. Siad, Marichu Antonio, Bonnie Lashewicz, Maria J. Santana
Summary: Effective engagement of underrepresented communities in health research and policy is challenging due to barriers hindering participation. This study aimed to identify person-centred care themes from diverse perspectives and explore innovative approaches to engage ethnocultural communities in research. Through participatory action research methods, Community Brokers were trained and focus group discussions were conducted to inform the development of quality indicators and initiatives to improve PCC, with the involvement of provincial stakeholders.
HEALTH EXPECTATIONS
(2022)
Article
Oncology
C. Mazariego, M. Jefford, R. J. Chan, N. Roberts, L. Millar, A. Anazodo, S. Hayes, B. Brown, C. Saunders, K. Webber, J. Vardy, A. Girgis, B. Koczwara
Summary: The aim of this study was to develop priority recommendations for the service level implementation of patient-reported outcomes (PROs) into clinical cancer care. A two-round modified Delphi survey was conducted to rank and prioritize statements related to PRO implementation. The results highlighted the importance of clinical relevance, stakeholder engagement, communication, and integration within existing processes and capabilities in implementing PROs in clinical cancer care.
JOURNAL OF CANCER SURVIVORSHIP
(2022)
Article
Health Care Sciences & Services
Kyle A. Kemp, Paul Fairie, Brian J. Steele, Maria J. Santana
Summary: This study reported on the experiences of hospitalized patients during the COVID-19 pandemic in Canada and compared them to historical results. The findings indicate that patients hospitalized during the early months of the pandemic had experiences that were largely better or comparable to pre-pandemic. This speaks to the dedication and resilience of staff who provided care during challenging circumstances.
JOURNAL OF PATIENT EXPERIENCE
(2022)
Article
Urology & Nephrology
Angela M. Stover, Ramsankar Basak, Dana Mueller, Robert Lipman, Randall Teal, Alison Hilton, Kara Giannone, Myra Waheed, Angela B. Smith
Summary: Optima II is a clinical trial evaluating a nonsurgical alternative as a primary treatment for nonmuscle-invasive bladder cancer. The study found that using UGN-102 as a primary treatment did not cause significant side effects and was well-received by patients.
JOURNAL OF UROLOGY
(2022)
Article
Medicine, General & Internal
Brian Jacob Steele, Paul Fairie, Kyle Kemp, Maria-Jose Santana
Summary: This study analyzed pediatric inpatient experience survey data in Alberta, Canada to determine factors associated with pediatric inpatient experiences. The results showed that older respondents, healthier patients, and patients treated at pediatric facilities were more likely to provide the most positive ratings. Higher respondent education was associated with decreased odds of providing the most positive ratings.
Review
Medicine, General & Internal
Kyung Ha You, Zarnie Lwin, Elizabeth Ahern, David Wyld, Natasha Roberts
Summary: The factors influencing clinical trial participation of cancer patients in Australia are important for understanding patients' willingness to participate in clinical trials. This scoping review aims to identify and map the current literature on this topic.
Article
Health Care Sciences & Services
Natalie C. Ludlow, Jill de Grood, Connie Yang, Sydney Murphy, Shannon Berg, Rick Leischner, Kerry A. McBrien, Maria J. Santana, Myles Leslie, Fiona Clement, Monica Cepoiu-Martin, William A. Ghali, Deirdre McCaughey
Summary: This research developed a novel evaluation framework to conceptualize and evaluate community-based health care initiatives, revealing the importance of a health system approach for evaluating community-based health care.
BMC HEALTH SERVICES RESEARCH
(2022)
Article
Health Care Sciences & Services
Lorynn Teela, Lieke E. Verhagen, Mariken P. Gruppen, Maria J. Santana, Martha A. Grootenhuis, Lotte Haverman
Summary: Engaging paediatric patients in healthcare is challenging. To address this issue, a user-centred design approach was used to develop a patient engagement game called "All Voices Count". Through three steps, important themes for adolescents were identified, the draft version of the game was evaluated, and usability was tested in clinical practice. The final version of the game provides clinicians with a tool to support shared decision-making and address adolescents' wishes and needs.
HEALTH EXPECTATIONS
(2022)
Article
Medicine, General & Internal
Jananee Rasiah, Stephen Freedman, Lee Macdonald, Kassi Prisnie, Mohamed Eltorki, Yaron Finkelstein, Gareth Hopkin, Maria-Jose Santana, Jennifer Thull-Freedman, Antonia Stang, Matthew Prebeg, Isabelle J. Gagnon, Margaret Steele, Ahmed Mater, Laurence Katz, Brian Greenfield, Laurie Plotnick, Suneeta Monga, Ellen Louise Lipman, Bruce Wright, Gina Dimitropoulos, Robert Porter, Katrina Hurley, Yazid N. Al Hamarneh, Amanda Newton
Summary: Patient engagement is essential in healthcare research to ensure alignment between research objectives and the needs of the population under study. This study aims to evaluate the processes and activities of patient partners in a pediatric mental healthcare trial.
Article
Multidisciplinary Sciences
Angela M. Stover, Mian Wang, Christopher M. Shea, Erica Richman, Jennifer Rees, Andrea L. Cherrington, Doyle M. Cummings, Liza Nicholson, Shannon Peaden, Macie Craft, Monique Mackey, Monika M. Safford, Jacqueline R. Halladay
Summary: This study examined the construct validity, reliability, and longitudinal trend of the Key Driver Implementation Scale (KDIS) in primary care practices. The results showed that KDIS had acceptable reliability, but further research is needed in larger sample sizes to determine if multiple groups of implementation activities are being measured rather than one.
Article
Oncology
Kea Turner, Angela M. Stover, Danielle B. Tometich, Carley Geiss, Arianna Mason, Oliver T. Nguyen, Emma Hume, Rachael McCormick, Sean Powell, Julie Hallanger-Johnson, Krupal B. Patel, Kedar S. Kirtane, Neelima Jammigumpula, Colin Moore, Randa Perkins, Dana E. Rollison, Heather S. L. Jim, Laura B. Oswald, Sylvia Crowder, Brian D. Gonzalez, Edmondo Robinson, Amir Alishahi Tabriz, Jessica Y. Islam, Scott M. Gilbert
Summary: This study assessed the perspectives of oncology providers and professionals on the barriers and facilitators of implementing suicide risk screening for patients with head and neck cancer. Multilevel implementation barriers were identified, such as patient difficulty with using a tablet, limited nursing engagement, limited clinic Wi-Fi connectivity, and low clinician self-efficacy for interpreting and acting upon patient-reported outcome scores. Participants recommended strengthening patient and clinician education and providing alternative data entry modalities for patients.
JCO ONCOLOGY PRACTICE
(2023)
Letter
Hematology
Lorynn Teela, Lotte Haverman, Christina Burgess, Petra Buckova, Karen Vandenabeele, Gaby Golan, Gloria Rooney, Ana Torres-Ortuno
Review
Health Care Sciences & Services
Lorynn Teela, Lieke E. Verhagen, Hedy A. van Oers, Esmee E. W. Kramer, Joost G. Daams, Mariken P. Gruppen, Maria J. Santana, Martha A. Grootenhuis, Lotte Haverman
Summary: In recent years, there has been increasing attention and recognition of pediatric patient engagement. This study provides an overview of the literature on pediatric patient engagement, identifying the characteristics of studies conducted in different countries, disease groups, and age ranges. The findings show that the level of patient engagement in pediatric care increases with age.
JOURNAL OF PATIENT-REPORTED OUTCOMES
(2023)
Article
Hematology
Joell E. Bense, Lotte Haverman, Erik G. J. von Asmuth, Marloes Louwerens, Michiel A. J. Luijten, Anne M. Stiggelbout, Arjan C. Lankester, Anne P. J. de Pagter
Summary: Survival rates in pediatric hematopoietic stem cell transplantation for nonmalignant diseases have improved, but long-term patient-reported outcomes are lacking. This study aimed to determine these outcomes and compare them with Dutch reference data.
TRANSPLANTATION AND CELLULAR THERAPY
(2023)