scholarly journals A catalyst for transforming health systems and person-centred care: Canadian national position statement on patient-reported outcomes

2020 ◽  
Vol 27 (2) ◽  
Author(s):  
S. Ahmed ◽  
L. Barbera ◽  
S. J. Bartlett ◽  
G. D. Bebb ◽  
M. Brundage ◽  
...  

Background Patient-reported outcomes (pros) are essential to capture the patient’s perspective and to influence care. Although pros and pro measures are known to have many important benefits, they are not consistently being used and there is there no Canadian pros oversight. The Position Statement presented here is the first step toward supporting the implementation of pros in the Canadian health care setting. Methods The Canadian pros National Steering Committee drafted position statements, which were submitted for stakeholder feedback before, during, and after the first National Canadian Patient Reported Outcomes (canpros) scientific conference, 14–15 November 2019 in Calgary, Alberta. In addition to the stakeholder feedback cycle, a patient advocate group submitted a section to capture the patient voice. Results The canpros Position Statement is an outcome of the 2019 canpros scientific conference, with an oncology focus. The Position Statement is categorized into 6 sections covering 4 theme areas: Patient and Families, Health Policy, Clinical Implementation, and Research. The patient voice perfectly mirrors the recommendations that the experts reached by consensus and provides an overriding impetus for the use of pros in health care. Conclusions Although our vision of pros transforming the health care system to be more patient-centred is still aspirational, the Position Statement presented here takes a first step toward providing recommendations in key areas to align Canadian efforts. The Position Statement is directed toward a health policy audience; future iterations will target other audiences, including researchers, clinicians, and patients. Our intent is that future versions will broaden the focus to include chronic diseases beyond cancer.

2016 ◽  
Vol 3 (3) ◽  
pp. 168 ◽  
Author(s):  
Heather Tabano ◽  
Thomas Gill ◽  
Kathryn Anzuoni ◽  
Heather Allore ◽  
Ann Gruber-Baldini ◽  
...  

2015 ◽  
Vol 39 (6) ◽  
pp. E17 ◽  
Author(s):  
Scott L. Parker ◽  
Anthony L. Asher ◽  
Saniya S. Godil ◽  
Clinton J. Devin ◽  
Matthew J. McGirt

OBJECT The health care landscape is rapidly shifting to incentivize quality of care rather than quantity of care. Quality and outcomes registry platforms lie at the center of all emerging evidence-driven reform models and will be used to inform decision makers in health care delivery. Obtaining real-world registry outcomes data from patients 12 months after spine surgery remains a challenge. The authors set out to determine whether 3-month patient-reported outcomes accurately predict 12-month outcomes and, hence, whether 3-month measurement systems suffice to identify effective versus noneffective spine care. METHODS All patients undergoing lumbar spine surgery for degenerative disease at a single medical institution over a 2-year period were enrolled in a prospective longitudinal registry. Patient-reported outcome instruments (numeric rating scale [NRS], Oswestry Disability Index [ODI], 12-Item Short Form Health Survey [SF-12], EQ-5D, and the Zung Self-Rating Depression Scale) were recorded prospectively at baseline and at 3 months and 12 months after surgery. Linear regression was performed to determine the independent association of 3- and 12-month outcome. Receiver operating characteristic (ROC) curve analysis was performed to determine whether improvement in general health state (EQ-5D) and disability (ODI) at 3 months accurately predicted improvement and achievement of minimum clinical important difference (MCID) at 12 months. RESULTS A total of 593 patients undergoing elective lumbar surgery were included in the study. There was a significant correlation between 3-month and 12-month EQ-5D (r = 0.71; p < 0.0001) and ODI (r = 0.70; p < 0.0001); however, the authors observed a sizable discrepancy in achievement of a clinically significant improvement (MCID) threshold at 3 versus 12 months on an individual patient level. For postoperative disability (ODI), 11.5% of patients who achieved an MCID threshold at 3 months dropped below this threshold at 12 months; 10.5% of patients who did not meet the MCID threshold at 3 months continued to improve and ultimately surpassed the MCID threshold at 12 months. For ODI, achieving MCID at 3 months accurately predicted 12-month MCID with only 62.6% specificity and 86.8% sensitivity. For postoperative health utility (EQ-5D), 8.5% of patients lost an MCID threshold improvement from 3 months to 12 months, while 4.0% gained the MCID threshold between 3 and 12 months postoperatively. For EQ-5D (quality-adjusted life years), achieving MCID at 3 months accurately predicted 12-month MCID with only 87.7% specificity and 87.2% sensitivity. CONCLUSIONS In a prospective registry, patient-reported measures of treatment effectiveness obtained at 3 months correlated with 12-month measures overall in aggregate, but did not reliably predict 12-month outcome at the patient level. Many patients who do not benefit from surgery by 3 months do so by 12 months, and, conversely, many patients reporting meaningful improvement by 3 months report loss of benefit at 12 months. Prospective longitudinal spine outcomes registries need to span at least 12 months to identify effective versus noneffective patient care.


2018 ◽  
Vol 33 (6) ◽  
pp. 649-656 ◽  
Author(s):  
Kerri Bell ◽  
Eugene Warnick ◽  
Kristen Nicholson ◽  
Sarah Ulcoq ◽  
Seong Jin Kim ◽  
...  

Health care increasingly collects patient-reported outcomes (PROs) via web-based platforms. The purpose of this study was to evaluate how patient age influences portal engagement. Patients undergoing elective surgery at a single multispecialty orthopedic practice from September 2014 to February 2017 had access to an online portal to complete PROs, message the clinic, and view physical therapy instructions. A mobile app was optionally available. Age, sex, log-in frequency, PRO completion rates, and number of messages sent were reviewed retrospectively. Message frequency, log-in rates, and PRO compliance were highest for patients aged 41 to 50, 51 to 60, and 61 to 70, respectively. Mobile app use decreased with age ( P = .002); yet, at all ages, the mobile app group was more engaged. In particular, for patients aged 18 to 30 years, log-in frequency increased 2.5-fold and PRO compliance improved 44% ( P < .001) in the mobile app group. This study demonstrates that portal interaction varies by age and that data capture is highest in patients who choose the mobile app.


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