Facilitating patient-centered care: the development of illustrated multidimensional patient-reported outcome measures for children/adolescents with juvenile idiopathic arthritis

2019 ◽  
Vol 38 (8) ◽  
pp. 2219-2226
Author(s):  
Yasser El Miedany ◽  
M. El Gaafary ◽  
H. Lotfy ◽  
N. El Aroussy ◽  
D. Mekkawy ◽  
...  
2021 ◽  
Vol 2 (2) ◽  
Author(s):  
Keith Meadows

Patient-reported outcome measures (PROMs) are valued in healthcare evaluation for bringing patient perspectives forward, and enabling patient-centered care. The range of evidence permitted by PROMs to measure patients’ quality of life narrowly denies subjective experience. This neglect is rooted in the epistemic assumptions that ground PROMs, and the tension between the standardization (the task of measurement) and the individual and unique circumstances of patients. To counter the resulting methodological shortcomings, this article proposes a hermeutical approach and interpretive phenomenology instead of generic qualitative research methods.


Author(s):  
Michael de Riesthal ◽  
Katherine B. Ross

In her seminal book on outcome measurement in the field of communication disorders, Carol Frattali (1998) set the path for outcomes research and clinical application in the field of speech-language pathology. In particular, she defined the many possible outcomes that can be measured to examine the influence of an intervention and the ways in which these measures can inform public policy. Of these, patient or client centered measures, which index outcome based on the patient's and family's or caregiver's perspective, have received increasing attention in recent research and clinical practice. These measures examine a variety of patient reported outcomes (PRO) associated with health. PRO measures are being used more commonly in clinical practice and as end points in medical and rehabilitation outcomes research. This perspective reflects the shift in medicine and rehabilitation toward patient-centered care. In this article, we will examine the rationale for using PRO measures, the advantages and challenges for using these tools, and current use of PRO measures in neurological communication disorders.


2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
A J Fauci ◽  
A Acampora ◽  
C Cadeddu ◽  
C Angioletti ◽  
A G De Belvis ◽  
...  

Abstract Background There is emerging interest in integrating Patient Reported Outcome Measures (PROMs) into the assessment of care quality. This study protocol aims at testing the collection and use of PROMs for evaluating and comparing health outcomes by patients with colorectal cancer. This is part of a project of the Istituto Superiore di Sanità and Gruppo Italiano di Reti Oncologiche (GIRO) aimed at promoting Value-Based Healthcare (VBHC) for performance evaluation of oncological healthcare providers. Methods A multicentric prospective observational study will be conducted at the seven GIRO oncological hospitals. For each hospital, 40 colorectal cancer patients undergoing either surgery or surgery plus neoadjuvant therapy, will be recruited (20 colon; 20 rectum) over 12 months. The data will be collected twice (before and after surgery) or three times for patients undergoing neoadjuvant therapy, by using EORTC-C30, a generic module for cancer patients and EORTC-CR29, a specific module for colorectal cancer patients. Collected data will be analyzed descriptively and the scores of each hospital will be compared to the overall scores of all the centers. Additional medical information will be used to adjust for the center casemix. Feedback from health professionals and patients will be collected through structured questionnaires and focus groups. Results The results will be interpreted to assess and compare the health outcomes reported by the patients among the GIRO hospitals. Feedback from health professionals and patients will help identify barriers and facilitators of implementation of PROs collection. Conclusions PROMs have the potential to systematically incorporate the patient perspective into the health outcome measurements for performance evaluation and benchmarking, which is essential to delivering high-value patient-centered care. The PROMs collected in this study will be integrated in a set of process and outcome indicators previously defined within same project. Key messages Patient-Reported Outcome Measures (PROMs) have the potential to systematically incorporate the patient perspective, which is essential to delivering high-value patient-centered care. It is critical to integrate PROMs in performance evaluation and comparison among oncological healthcare providers for improving the quality of care in a Value-Based Healthcare perspective.


Neurology ◽  
2018 ◽  
Vol 91 (12) ◽  
pp. e1135-e1151 ◽  
Author(s):  
Brittany Lapin ◽  
Belinda Udeh ◽  
Jocelyn F. Bautista ◽  
Irene L. Katzan

ObjectiveTo quantify the neurologic patient experience with patient-reported outcome measures (PROMs) and identify factors associated with a positive PROMs experience.MethodsThis retrospective study included all patients seen in 6 neurologic clinics who completed patient experience questions at least once between October 2015 and September 2016. Questions assessed overall satisfaction with PROMs, as well as 4 facets of the PROM experience: usefulness of questions, ease of understanding, effect on communication with provider, and effect on control of their own care. Clinic and patient characteristics were summarized across questions and predictors of response were identified using multivariable proportional odds models.ResultsA total of 16,157 patients answered generic and condition-specific PROMs, as well as questions on their experience with completing PROMs. The majority of patients agreed/strongly agreed questions were easy to understand (96%), useful (83%), and improved communication (78%) and control (71%). After adjustment for other factors, being younger, black, or depressed, or having lower household income, were independent predictors of high satisfaction with PROMs. Patients who indicated the system improved communication and control of care were more often male, black, and lower income. Variability in responses was shown by clinic.ConclusionGiven the growing importance of patient satisfaction in health care, the patient experience with PROMs is a critical component of their successful implementation and utilization. Findings from this study support the feasibility of collecting PROMs in neurologic practice and the potential as a tool to optimize patient-centered neurologic care.


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