scholarly journals Measuring patient-reported outcomes to improve cancer care in Canada: an analysis of provincial survey data

2018 ◽  
Vol 25 (2) ◽  
pp. 176 ◽  
Author(s):  
K. Tran ◽  
S. Zomer ◽  
J. Chadder ◽  
C. Earle ◽  
S. Fung ◽  
...  

Patient-reported outcomes measures (proms) are an important component of the shift from disease-centred to person-centred care. In oncology, proms describe the effects of cancer and its treatment from the patient perspective and ideally enable patients to communicate to their providers the physical symptoms and psychosocial concerns that are most relevant to them. The Edmonton Symptom Assessment System–revised (esas-r) is a commonly used and validated tool in Canada to assess symptoms related to cancer. Here, we describe the extent to which patient reported outcome programs have been implemented in Canada and the severity of symptoms causing distress for patients with cancer.As of April 2017, 8 of 10 provinces had implemented the esas-r to assess patient-reported outcomes. Data capture methods, the proportion of cancer treatment sites that have implemented the esas-r, and the time and frequency of screening vary from province to province. From October 2016 to March 2017 in the 8 reporting provinces, 88.0% of cancer patients were screened for symptoms. Of patients who reported having symptoms, 44.3% reported depression, with 15.5% reporting moderate-to-high levels; 50.0% reported pain, with 18.6% reporting moderate-to-high levels; 56.2% reported anxiety, with 20.4% reporting moderate-to-high levels; and 75.1% reported fatigue, with 34.4% reporting moderate-to-high levels.There are some notable areas in which the implementation of proms could be improved in Canada. Findings point to a need to increase the number of cancer treatment sites that screen all patients for symptoms; to standardize when and how frequently patients are screened across the country; to screen patients for symptoms during all phases of their cancer journey, not just during treatment; and to assess whether giving cancer care providers real-time patient-reported outcomes data has led to appropriate interventions that reduce the symptom burden and improve patient outcomes. Continued measurement and reporting at the system level will allow for a better understanding of progress in proms activity over time and of the areas in which targeted quality improvement efforts could ensure that patient symptoms and concerns are being addressed.

2019 ◽  
Author(s):  
Garden Lee ◽  
Han Sang Kim ◽  
Si Won Lee ◽  
Eun Hwa Kim ◽  
Bori Lee ◽  
...  

Abstract Background: Although early palliative care is associated with a better quality of life and improved outcomes in end-of-life cancer care, the criteria of palliative care referral are still elusive. Methods: We collected patient-reported symptoms using the Edmonton Symptom Assessment System (ESAS) at the baseline, first, and second follow-up visit. The ESAS evaluates ten symptoms: pain, fatigue, nausea, depression, anxiety, drowsiness, dyspnea, sleep disorder, appetite, and wellbeing. A total of 71 patients were evaluable, with a median age of 65 years, male (62%), and the Eastern Cooperative Oncology Group (ECOG) performance status distribution of 1/2/3 (28%/39%/33%), respectively. Results: Twenty (28%) patients had moderate/severe symptom burden with the mean ESAS ≥5. Interestingly, most of the patients with moderate/severe symptom burdens (ESAS ≥5) had globally elevated symptom expression. While the mean ESAS score was maintained in patients with mild symptom burden (ESAS<5; 2.7 at the baseline; 3.4 at the first follow-up; 3.0 at the second follow-up; P =0.117), there was significant symptom improvement in patients with moderate/severe symptom burden (ESAS≥5; 6.5 at the baseline; 4.5 at the first follow-up; 3.6 at the second follow-up; P <0.001). Conclusions: Advanced cancer patients with ESAS ≥5 may benefit from outpatient palliative cancer care. Prescreening of patient-reported symptoms using ESAS can be useful for identifying unmet palliative care needs in advanced cancer patients.


Author(s):  
Laura Davis ◽  
Alyson Mahar ◽  
Lev Bubis ◽  
Qing Li ◽  
Haoyu Zhao ◽  
...  

IntroductionSince 2007, Cancer Care Ontario (CCO) has systematically collected patient-reported outcomes (PROs) in the form of symptom data, for cancer outpatients visiting regional cancer centres or affiliate institutions. Data are used in real-time to facilitate conversation between clinicians and patients and have recently been combined with provincial administrative databases. Objectives and ApproachCCO collects PROs using the Edmonton Symptom Assessment System (ESAS), which scores 9 symptoms on a scale of 0 (no symptoms) to 10 (worst symptom severity). Data were imported from CCO in 2015 and linked to a cancer cohort at ICES. We investigated differences between patients who completed $\geq$1 ESAS record and patients who did not, as well as the number of records, timing of data collection and missingness. We describe our experience linking and using the PRO data to administrative data, including presenting trajectories of symptoms over time and combining scores into composite indices. Results120,745 cancer patients had 729,861 symptom records between 2007 and 2014. Not all patients with a cancer diagnosis had $\geq$1 ESAS record and this varied by patient, disease and system level factors. Because implementation occurred from a clinical perspective, data collection was irregular within and across patients and depended on treatment and other factors; the number of records per patient varied, as well the number of contributing patients in each time period following diagnosis. Attempts were made to create meaningful composite indices by combining all symptom scores as well as combining multiple high scores for each individual symptom. As a result, selecting the best statistical analysis to use these PRO data as an exposure or outcome is still uncertain. Conclusion/ImplicationsPRO data linked to provincial, administrative data holdings represent a new frontier for population-based cancer research, both in their challenging structure as well as their implications for clinical practice and health system. These lessons learned will hopefully support other researchers rigorous use of these data in the future.


2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 56-56
Author(s):  
Sean Molloy ◽  
Jose Pereira ◽  
Esther Green ◽  
Deborah Jane Dudgeon ◽  
Doris Howell ◽  
...  

56 Background: The goal of the collaborative is to improve the quality and consistency of physical and emotional symptom management across the cancer journey. Objectives are: (a) promote the adoption of electronic symptom assessment using a standardized tool and (b) increase the clinical use of evidence based guidelines to effectively manage patient identified symptoms. Methods: The actions taken for this initiative are to manage cancer symptoms through a patient reported measurement tool; improve the quality of symptom management through the uptake of symptom management guides and algorithms for care; and drive improvement through the adoption of an electronic symptom assessment platform The following aims were established for this work: (1) Aim for symptom screening and assessment (70% of ambulatory cancer clinic patients are screened for symptom severity using ESAS at least once/month) (2) aim for symptom management (evidence from chart audits show intervention as per evidence based guidelines for patients reported symptom scores) (3) aim for patient satisfaction (90% of target population indicates that their health care team took their scores into consideration when developing a care plan) and (4) aim for evidence of use (90% of patients state that their doctor or nurse spoke with them about their symptom screen). Results: 60% of cancer patients are screened each month representing over 28,000 people. Six of fourteen cancer regions are above the provincial target of 70%, with some close to 90%. 92% of patients felt ESAS was important to complete to help health care providers know how they are feeling. Conclusions: Cancer Care Ontario has been able to drive improvements in symptom management through the implementation of system wide electronic symptom assessment. For other jurisdictions interested in adopting this approach, the following areas are critical for success. (a.) Leadership at all levels of the system; (b.) clinical tools at the point of care; (c) engagement of patients in the design of care; (d) communications support to spread information to all stakeholders; and (e) using to data to drive performance improvement and accountability.


2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 159-159
Author(s):  
Sean Molloy ◽  
Jose Pereira ◽  
Esther Green ◽  
Deborah Jane Dudgeon ◽  
Doris Howell ◽  
...  

159 Background: The goal of the collaborative is to improve the quality and consistency of physical and emotional symptom management across the cancer journey. Objectives are to promote the adoption of electronic symptom assessment using a standardized tool and to increase the clinical use of evidence based guidelines to effectively manage patient identified symptoms. Methods: The actions taken for this initiative are (a) manage cancer symptoms through a patient reported measurement tool; (b) improve the quality of symptom management through the uptake of symptom management guides and algorithms for care; and (c) drive improvement through the adoption of an electronic symptom assessment platform. The following aims were established for this work: (1) aim for symptom screening and assessment (70% of ambulatory cancer clinic patients are screened for symptom severity using ESAS at least once/month); (2) aim for symptom management (evidence from chart audits show intervention as per evidence based guidelines for patients reported symptom scores); (3) aim for patient satisfaction (90% of target population indicates that their health care team took their scores into consideration when developing a care plan); and (4)aim for evidence of use (90% of patients state that their doctor or nurse spoke with them about their symptom screen). Results: 60% of cancer patients are screened each month representing over 28,000 people. Six of fourteen cancer regions are above the provincial target of 70%, with some close to 90%. 92% of patients felt ESAS was important to complete to help health care providers know how they are feeling. Conclusions: Cancer Care Ontario has been able to drive improvements in symptom management through the implementation of system wide electronic symptom assessment. For other jurisdictions interested in adopting this approach, the following areas are critical for success: a) leadership at all levels of the system; b) clinical tools at the point of care; c) engagement of patients in the design of care; d) communications support to spread information to all stakeholders; and e) using to data to drive performance improvement and accountability.


2020 ◽  
Vol 15 (9) ◽  
pp. 1299-1309 ◽  
Author(s):  
Jenna M. Evans ◽  
Alysha Glazer ◽  
Rebecca Lum ◽  
Esti Heale ◽  
Marnie MacKinnon ◽  
...  

Background and objectivesThe Edmonton Symptom Assessment System Revised: Renal is a patient-reported outcome measure used to assess physical and psychosocial symptom burden in patients treated with maintenance dialysis. Studies of patient-reported outcome measures suggest the need for deeper understanding of how to optimize their implementation and use. This study examines patient and provider perspectives of the implementation process and the influence of the Edmonton Symptom Assessment System Revised: Renal on symptom management, patient-provider communication, and interdisciplinary communication.Design, setting, participants, & measurements Eight in-facility hemodialysis programs in Ontario, Canada, assessed patients using the Edmonton Symptom Assessment System Revised: Renal every 4–6 weeks for 1 year. Screening and completion rates were tracked, and pre- and postimplementation surveys and midimplementation interviews were conducted with patients and providers. A chart audit was conducted 12 months postimplementation.ResultsIn total, 1459 patients completed the Edmonton Symptom Assessment System Revised: Renal; 58% of eligible patients completed the preimplementation survey (n=718), and 56% of patients who completed the Edmonton Symptom Assessment System Revised: Renal at least once completed the postimplementation survey (n=569). Provider survey response rates were 71% (n=514) and 54% (n=319), respectively. Nine patients/caregivers from three sites and 48 providers from all sites participated in interviews. A total of 1207 charts were audited. Seven of eight sites had mean screening rates over 80%, suggesting that routine use of the Edmonton Symptom Assessment System Revised: Renal in clinical practice is feasible. However, the multiple data sources painted an inconsistent picture of the value and effect of the Edmonton Symptom Assessment System Revised: Renal. The Edmonton Symptom Assessment System Revised: Renal standardized symptom screening processes across providers and sites; improved patient and provider symptom awareness, particularly for psychosocial symptoms; and empowered patients to raise issues with providers. Yet, there was little, if any, statistically significant improvement in the metrics used to assess symptom management, patient-provider communication, and interdisciplinary communication.ConclusionsThe Edmonton Symptom Assessment System Revised: Renal patient-reported outcome measure may be useful to standardize symptom screening, enhance awareness of psychosocial symptoms among patients and providers, and empower patients rather than to reduce symptom burden.


2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 190-190 ◽  
Author(s):  
Emily R. Mackler ◽  
Kathleen W. Beekman ◽  
Laura Bushey ◽  
Anne Gentz ◽  
Kathleen Davis ◽  
...  

190 Background: Management of oral chemotherapy presents many challenges to oncology practitioners. The purpose of this study is to describe how incorporation of patient reported outcomes (PRO) for patients receiving oral chemotherapy can identify those patients who are experiencing moderate to severe symptom burden and nonadherence. Methods: As part of a statewide quality collaborative, we wished to improve our monitoring of patients receiving oral chemotherapy. The quality collaborative created a PRO assessment that includes a revised Edmonton Symptom Assessment Scale (ESAS), a single-item adherence question, reasons for nonadherence, the patient’s most bothersome symptom and questions related to patient confidence. Our medical assistants provide the assessment to the patient before each appointment. Results: Patients completing the PRO during the first 3 months (7/7/16 – 9/27/16) were evaluated. We had 32 assessments completed by 23 patients. The oral chemotherapy prescribed were capecitabine (48%), erlotinib (13%), temozolomide (13%), and not recorded (26%). Of the 29 completed ESAS assessments, 72% included at least 1 moderate side effect, and 48% included at least 1 severe side effect. 29% of patients reported low-moderate confidence to self-manage their symptoms. Less than excellent adherence (<80% adherence) was reported in 30% of patients with the most commonly reported reason being related to side effects or concerns about side effects. Conclusions: Use of PROs in our oral chemotherapy population identified a large proportion of patients experiencing moderate to severe side effects. Further assessment of how this compares to what patients report to their oncologist during their visits will be reviewed. In addition, we found that approximately 30% of our patients are nonadherent to their oral chemotherapy. This is consistent with recent publications. We plan to continue assessing patient outcomes and utilizing the data we collect to improve patient self-management support.


2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 205-205
Author(s):  
Wei Fang Dai ◽  
Jaclyn Marie Beca ◽  
Helen Guo ◽  
Lucy Qiao ◽  
Wanrudee Isaranuwatchai ◽  
...  

205 Background: Advanced pancreatic cancer (APC) patients often have a substantial symptom burden. In Ontario, patients visiting cancer clinics routinely complete the Edmonton Symptom Assessment Scale (ESAS), which screens for 9 symptoms (scale: 0-10). Using ESAS, we explored the association between baseline patient-reported outcomes and overall survival (OS). Methods: APC Patients with ESAS records prior to receiving publicly-funded drugs from November 2008 to March 2016 were identified from Cancer Care Ontario’s New Drug Funding Program and Symptom Management databases. We examined 3 baseline composite ESAS scores: Total Symptom Distress Score (TSDS: all 9 symptoms), Physical Symptom Score (PHS: 6/9 symptoms), and Psychological Symptom Score (PSS: 2/9 symptoms); Composite scores greater than a threshold (defined as number of symptoms in composite score multiplied by clinically relevant score (≥4)) were categorized as High Symptom Burden (TSDS ≥ 36, PHS ≥ 24, PSS ≥ 8). The primary endpoint, OS, was assessed using Kaplan-Meier. Multivariable Cox models were used to adjust for age, gender, income, prior therapies (surgery, adjuvant gemcitabine, radiation), and Charlson's comorbidity. Analysis was repeated in a sub-cohort with identifiable ECOG status and stage. Results: We identified 2,199 APC patients (mean age 64 years, 55% male) with ESAS records prior to receiving gemcitabine (54%), FOLFIRINOX (40%) or gemcitabine/nab-paclitaxel (6%). Crude median survival was 4.5 and 7.3 months for patients with high and low TSDS burden, respectively (HR = 1.50, 95% CI: 1.36, 1.66). After adjustment with multivariable Cox model, high TSDS burden was associated with lower OS (HR = 1.47, 95% CI: 1.33, 1.63). Similar trends were observed for PHS and PSS. When adjusting for both PHS and PSS in a Cox model, only the effect of PHS remained significant. In the sub-cohort (n = 393), high TSDS burden (HR = 1.34, 95% CI: 1.04, 1.73) was associated with lower OS, after adjusting for ECOG and stage. Conclusions: Among APC patients, a higher burden of patient-reported symptoms, via ESAS, at baseline was associated with reduced OS. The effect was prominent for physical symptoms, even after adjusting for treatment, stage and ECOG.


2014 ◽  
Vol 19 (6) ◽  
pp. 309-312
Author(s):  
Michael S Sanatani ◽  
Maan Kattan ◽  
Dwight E Moulin

BACKGROUND: The issue of how to address patient pain in the outpatient setting remains challenging. At the London Regional Cancer Program (London, Ontario), patients complete the Edmonton Symptom Assessment System (ESAS) before most visits.OBJECTIVES:To perform a chart review assessing the frequency and, if applicable, the type of a clinical care plan that was developed if a patient indicated pain ≥7 on a 10-point scaleMETHODS: The charts of 100 eligible sequential outpatient visits were reviewed and the initial pain management approaches were documented.RESULTS: Between December 2011 and May 2012, visits by 7265 unique patients included 100 eligible visits (pain ≥7 of 10). In 83 cases, active pain management plans, ranging from counselling to hospital admission, were proposed. Active pain management plans were more likely if the cause was believed to be cancer/treatment related: 63 of 65 (96.9%) versus 20 of 35 (57.1%, noncancer/unknown pain cause); P<0.001. There were no differences depending on cancer treatment intent or medical service.CONCLUSIONS: Active pain management plans were documented in 83% of visits. However, patients who reported severe pain that was assessed as benign or unknown in etiology received intervention less frequently, perhaps indicating that oncologists either consider themselves less responsible for noncancer pain, or believe that pain chronicity may lead to a higher ESAS pain score without indicating a need for acute intervention. Further study is needed to determine the subsequent effect of the care plans on patient-reported ESAS pain scores at future clinic visits.


2021 ◽  
Author(s):  
Irini Youssef ◽  
Aasha Hoogland ◽  
Jad Chahoud ◽  
Philippe Spiess ◽  
Heather Jim ◽  
...  

Abstract Objective: Patient reports of their symptom burden (i.e., patient-reported outcomes or PROs) have been shown to direct clinicians’ ability to personalize care and improve outcomes. A disciplined assessment of PRO in the population of patients with penile cancer (PeCa) has not previously been undertaken. Our center has both a significant cadre of patients with PeCa and a significant experience with a well-established PRO: the Edmonton Symptom Assessment Scale (ESAS).Methods: After IRB approval, we screened ESAS surveys of 14,781 patients completed between 2/2017 and 2/2021. Of these, those with PeCa were divided into three cohorts: (A) Those after any partial penectomy procedure without lymph node dissection (LND); (B) Those after partial penectomy procedure with LND; and (C) Those after total penectomy and LND. Patients with recurrent disease were analyzed separately. ESAS scores were collated and compared both by individual symptom and cumulatively.Results: 22 PeCa patients completed 122 ESAS surveys in this time and are included in this analysis: a median of 4 ESAS surveys (mean=5, range=1-19) were completed by each patient. The symptom with the highest median ESAS score was Tiredness (3.00). Patients with recurrent disease had the highest cumulative symptom score (median score = 30). Patients after total penectomy with LND had a higher cumulative symptom score (14.4) than those with partial penectomy and LND (7.9).Conclusions: PROs provide an insight into the morbidity of therapies for PeCa, and the most symptoms are reported by patients with recurrent disease.


2018 ◽  
pp. 1-12 ◽  
Author(s):  
Charlene M. Fares ◽  
Timothy J. Williamson ◽  
Matthew K. Theisen ◽  
Amy Cummings ◽  
Krikor Bornazyan ◽  
...  

Purpose Health care research increasingly relies on assessment of data extracted from electronic medical records (EMRs). Clinical trial adverse event (AE) logs and patient-reported outcomes (PROs) are sources of data often available in the context of specific research projects. The aim of this study was to evaluate the extent of data concordance from these sources. Patients and Methods Patients enrolled in clinical trials or receiving standard treatment for lung cancer (n = 62) completed validated questionnaires on physical and psychological symptoms at up to three assessment points. Temporally matched documentation was extracted from EMR notes and, for clinical trial participants (n = 41), AE logs. Evaluated data included symptom assessment, vital signs, medication logs, and laboratory values. Agreement (positive, negative) and Cohen’s κ coefficients were calculated to assess concordance of symptoms among sources, with PROs considered the gold standard. Results Patient-reported weight loss correlated significantly with clinical measurements ( t = 2.90; P = .02), and average number of PROs correlated negatively with albumin concentration, supporting PROs as the gold standard. Comparisons of PROs versus EMR yielded poor concordance across 11 physical symptoms, anxiety, and depressive symptoms (all κ < 0.40). Providers under-reported the presence of each symptom in the EMR compared with PROs. AE logs showed similarly poor concordance with PROs (all κ < 0.40, except shortness of breath). Negative agreement among sources was higher than positive agreement for all symptoms except pain. Conclusion There was poor concordance between EMR notes and AE logs with PROs. Findings suggest that EMR notes and AE logs may not be reliable sources for capturing physical and psychological symptoms experienced by patients with lung cancer, supporting use of PRO assessments in oncology practices.


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