Provincial development of a patient-reported outcome initiative to guide patient care, quality improvement, and research

Olson, Robert; Howard, Fuchsia; Lapointe, Vincent; Schellenberg, Devin; Nichol, Alan; Bowering, Gale; Curtis, Susan; Walter, Allison; Brown, Steven E.; Thompson, C.; Bergin, Jackie; Lomas, Sheri; French, John; Halperin, Ross; Tyldesley, Scott; Beckham, Wayne

doi:10.1177/0840470417715478

Cited by 19 publications

(18 citation statements)

References 20 publications

(24 reference statements)

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“… ECOG status Charleson Comorbidity Index (CCI) Patient Reported Outcomes including Quality of Life assessment using BC Cancer’s Prospective Outcomes and Support Initiative [ 12 ] Provider Reported Toxicity …”

Section: Methodsmentioning

confidence: 99%

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Population-based phase II trial of stereotactic ablative radiotherapy (SABR) for up to 5 oligometastases: SABR-5

Olson

Liu

Bergman³

et al. 2018

BMC Cancer

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BackgroundOligometastases refer to a state of disease where cancer has spread beyond the primary site, but is not yet widely metastatic, often defined as 1–3 or 1–5 metastases in number. Stereotactic ablative radiotherapy (SABR) is an emerging radiotherapy technique to treat oligometastases that require further prospective population-based toxicity estimates.MethodsThis is a non-randomized phase II trial where all participants will receive experimental SABR treatment to all sites of newly diagnosed or progressing oligometastatic disease. We will accrue 200 patients to assess toxicity associated with this experimental treatment. The study was powered to give a 95% confidence on the risk of late grade 4 toxicity, anticipating a < 5% rate of grade 4 toxicity.DiscussionSABR treatment of oligometastases is occurring off-trial at a high rate, without sufficient evidence of its efficacy or toxicity. This trial will provide necessary toxicity data in a population-based cohort, using standardized doses and organ at risk constraints, while we await data on efficacy from randomized phase III trials.Trial RegistrationRegistered through clinicaltrials.gov NCT02933242 on October 14, 2016 prospectively before patient accrual.Electronic supplementary materialThe online version of this article (10.1186/s12885-018-4859-7) contains supplementary material, which is available to authorized users.

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Section: Methodsmentioning

confidence: 99%

“…Patient Reported Outcomes including Quality of Life assessment using BC Cancer’s Prospective Outcomes and Support Initiative [ 12 ]…”

Section: Methodsmentioning

confidence: 99%

Population-based phase II trial of stereotactic ablative radiotherapy (SABR) for up to 5 oligometastases: SABR-5

Olson

Liu

Bergman³

et al. 2018

BMC Cancer

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“…They are an essential part of person-centred care and can improve the quality of patient care 5 , improve patient-clinician communication [6][7][8][9][10][11][12][13] , reduce health services use and emergency department visits 8,14 , assist with problem detection 15,16 , and influence patient management 12 . Importantly, pros improve patient outcomes such as symptom control, satisfaction 6,7 , health-related quality of life 8 , and functioning 10,[17][18][19] , and have been associated with increased survival duration [20][21][22][23] . Collection of pros provides evidence in the form of patient-centred data for clinicians, payers, researchers, and policymakers, and can assist in the evaluation and implementation of new care methods 2 .…”

mentioning

confidence: 99%

“…Globally, pros have been used in clinical trials and in many organizations for decades. In Canada, although many research and patient-care organizations are working to incorporate pros into their clinical processes, the use and implementation of pros is regionally or provincially siloed and can be fragmented across various medical disciplines 21 . There is no nationally mandated guidance on pros, and there are no implementation best practices.…”

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confidence: 99%

A Catalyst for Transforming Health Systems and Person-Centred Care: Canadian National Position Statement on Patient-Reported Outcomes

et al. 2020

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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.

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“…This includes the ability to conduct a literature search, to catalogue existing measures and to provide oversight for a process that relies on clinical experts, methods experts, operational team members and patients. While resources are required for a rigorous process, the payoff is a well vetted measure that will suit the needs of patients and the organization which can strengthen implementation; however, other approaches, which may be less resourceintense have been used in other jurisdictions [24].…”

Section: Discussionmentioning

confidence: 99%

Selecting, implementing and evaluating patient-reported outcome measures for routine clinical use in cancer: the Cancer Care Ontario approach

Montgomery

Howell

Ismail

et al. 2020

J Patient Rep Outcomes

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Background The use of Patient-Reported Outcome Measures (PROMs) in routine clinical care can help ensure symptoms are identified, acknowledged and addressed. In 2007, the provincial cancer agency, Cancer Care Ontario, began to implement routine symptom screening with the Edmonton Symptom Assessment System (ESAS) for ambulatory cancer patients. Having had a decade of experience with ESAS, the program developed a strategic interest in implementing new and/or additional measures. This article describes the development of a streamlined PROM selection and implementation evaluation process with core considerations. Methods Development of the PROM selection and implementation evaluation process involved analysis of quantitative and qualitative data as well as consensus building through a multi-stakeholder workshop. Core PROM selection considerations were developed through a literature scan, review and refinement by a panel of methodological experts and patient advisors, and testing via a test case. Core PROM implementation evaluation considerations were developed through analysis of PROM evaluation frameworks, and review and refinement by a committee of provincial implementation leads. Results Core PROM selection considerations were identified under three overarching themes: symptom coverage, usability and psychometric properties. The symptom coverage category assesses each PROM to determine how well the PROM items address the most prevalent and burdensome symptoms in the target patient population. The usability category aims to assess each measure on characteristics key to successful implementation in the clinical setting. The psychometric properties category assesses each PROM to ensure the data collected is credible, meaningful and interpretable. A scoring system was developed to rate PROM performance by assigning a grade of “weak”, “average” or “good” for each category. The process results in a summary matrix which illustrates the overall assessment of each PROM. Implementation evaluation considerations were identified under three overarching concepts: acceptability, outcomes, and sustainability. A consensus building exercise resulted in the further identification of patient, provider, and clinic specific indicators for each consideration. Conclusion To address the need for a systematic, evidence-based approach to selection, implementation and evaluation of PROMs in the clinical setting, Cancer Care Ontario defined a process with embedded core considerations to facilitate decision-making and encourage standardization.

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Provincial development of a patient-reported outcome initiative to guide patient care, quality improvement, and research

Cited by 19 publications

References 20 publications

Population-based phase II trial of stereotactic ablative radiotherapy (SABR) for up to 5 oligometastases: SABR-5

Population-based phase II trial of stereotactic ablative radiotherapy (SABR) for up to 5 oligometastases: SABR-5

A Catalyst for Transforming Health Systems and Person-Centred Care: Canadian National Position Statement on Patient-Reported Outcomes

Selecting, implementing and evaluating patient-reported outcome measures for routine clinical use in cancer: the Cancer Care Ontario approach

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