Designing and Validating a Comprehensive Patient-Reported Outcomes Measure for Ambulatory Cancer Settings: The Revised Edmonton Symptom Assessment System for Cancer.

PURPOSE: Patient-reported outcomes (PROs) information has been routinely collected in Cancer Care Alberta (CCA) for years using the revised Edmonton Symptom Assessment System (ESAS-r) and Canadian Problem Checklist (CPC). There was interest in combining these into a more comprehensive single measure tailored to ambulatory cancer settings. The purpose of this study was to validate an expanded and redesigned ESAS-r called the ESAS-r Cancer. METHODS: Stakeholder engagement, a review of the literature, and 2 years of CPC data collected in the cancer program informed the addition of six symptoms to the ESAS-r. To assess and validate the measure, 1,600 randomly sampled patients were mailed paper copies of the ESAS-r Cancer, ESAS-r, and a validated, comprehensive PRO measure called the Memorial System Assessment Scale-Short Form (MSAS-SF), which is often used with patients with cancer. Canonical Correlation Analysis and exploratory factor analyses were performed to assess concurrent and construct validity of the ESAS-r Cancer against ESAS-r, using MSAS-SF as the reference measure for comparison. Cronbach α was calculated to assess reliability. RESULTS: Four hundred and sixty-one patients (29% response rate) completed all three questionnaires. ESAS-r Cancer showed higher numerical correlation than ESAS-r and accounted for more information included on MSAS-SF, explaining slightly more variance than ESAS-r (75.2% v 73.5%). The three-dimensional factor structure of ESAS-r Cancer outperformed the two-dimensional factor structure of ESAS-r. The reliability of ESAS-r Cancer was verified and found to be slightly higher than ESAS-r (Cronbach α = .903 v .884). CONCLUSION: ESAS-r Cancer is now in use with patients throughout CCA. This valid and reliable PRO measure can be used by other cancer or specialized health care programs who wish to routinely assess common symptoms.

End-of-Life Symptom Burden among Patients with Cancer Who Were Provided Medical Assistance in Dying (MAID): A Longitudinal Propensity-Score-Matched Cohort Study.

Cancer is the primary underlying condition for most Canadians who are provided Medical Assistance in Dying (MAID). However, it is unknown whether cancer patients who are provided MAID experience disproportionally higher symptom burden compared to those who are not provided MAID. Thus, we used a propensity-score-matched cohort design to evaluate longitudinal symptom trajectories over the last 12 months of patients' lives, comparing cancer patients in Alberta who were and were not provided MAID. We utilized routinely collected retrospective Patient-Reported Outcomes (PROs) data from the Edmonton Symptom Assessment System (ESAS-r) reported by Albertans with cancer who died between July 2017 and January 2019. The data were analyzed using mixed-effect models for repeated measures to compare differences in symptom trajectories between the cohorts over time. Both cohorts experienced increasing severity in all symptoms in the year prior to death (ß from 0.086 to 0.231, p ≤ .001 to .002). Those in the MAID cohort reported significantly greater anxiety (ß = -0.831, p = .044) and greater lack of appetite (ß = -0.934, p = .039) compared to those in the non-MAID cohort. The majority (65.8%) of patients who received MAID submitted their request for MAID within one month of their death. Overall, the MAID patients did not experience disproportionally higher symptom burden. These results emphasize opportunities to address patient suffering for all patients with cancer through routine collection of PROs as well as targeted and early palliative approaches to care.

Testing a modified electronic version of the Edmonton symptom assessment system-revised for remote online completion with ambulatory cancer patients in Alberta, Canada.

Objective: The cancer program in Alberta, Canada routinely collects patient-reported outcomes using the Edmonton symptom assessment system-revised (ESAS-r). The program recently launched the province's new clinical information system which has expanded functionality, allowing patients to complete symptom questionnaires remotely online, instead of completing a paper form at the clinic. This study aimed to test a modified electronic version of the ESAS-r [(e)ESAS-r] with patients, to assess the feasibility of completion and questionnaire clarity. Methods: Staff, patients, and other stakeholders worked to create modified definitions for ESAS-r symptoms, to aid in patient understanding. Patient and family advisors were recruited to test the questionnaire. Participants completed an online mock-up of the (e)ESAS-r and answered questions about technical issues. One-to-one cognitive interviews were held to discuss each symptom definition in detail. Modifications were made based on the feedback and a second round of interviews was held to finalize the wording. Results: In total, 19 patients and 7 family advisors participated. All but one (96.2%) completed the questionnaire without assistance and had no technical issues. Participants requested certain wording modifications and that definitions be added for all symptoms for consistency. Very few participants reported any confusion with the final definitions. Conclusions: The (e)ESAS-r was tested for clarity and ease of completion and was determined to be suitable for remote online use with ambulatory cancer patients. The enhanced definitions on the new questionnaire were clear to patients and helped ensure they understood the meaning of each symptom they were asked to rate.

Patient-Reported Symptom Complexity and Acute Care Utilization Among Patients With Cancer: A Population-Based Study Using a Novel Symptom Complexity Algorithm and Observational Data.

BACKGROUND: Patients with cancer in Canada are often effectively managed in ambulatory settings; however, patients with unmanaged or complex symptoms may turn to the emergency department (ED) for additional support. These unplanned visits can be costly to the healthcare system and distressing for patients. This study used a novel patient-reported outcomes (PROs)-derived symptom complexity algorithm to understand characteristics of patients who use acute care, which may help clinicians identify patients who would benefit from additional support. PATIENTS AND METHODS: This retrospective observational cohort study used population-based linked administrative healthcare data. All patients with cancer in Alberta, Canada, who completed at least one PRO symptom-reporting questionnaire between October 1, 2019, and April 1, 2020, were included. The algorithm used ratings of 9 symptoms to assign a complexity score of low, medium, or high. Multivariable binary logistic regressions were used to evaluate factors associated with a higher likelihood of having an ED visit or hospital admission (HA) within 7 days of completing a PRO questionnaire. RESULTS: Of the 29,133 patients in the cohort, 738 had an ED visit and 452 had an HA within 7 days of completing the PRO questionnaire. Patients with high symptom complexity had significantly higher odds of having an ED visit (OR, 3.10; 95% CI, 2.59-3.70) or HA (OR, 4.20; 95% CI, 3.36-5.26) compared with low complexity patients, controlling for demographic covariates. CONCLUSIONS: Given that patients with higher symptom complexity scores were more likely to use acute care, clinicians should monitor these more complex patients closely, because they may benefit from additional support or symptom management in ambulatory settings. A symptom complexity algorithm can help clinicians easily identify patients who may require additional support. Using an algorithm to guide care can enhance patient experiences, while reducing use of acute care services and the accompanying cost and burden.

Quantifying the Impact of Family Doctors on the Care Experiences of Patients with Cancer: Exploring Evidence from the 2021 Ambulatory Oncology Patient Satisfaction Survey in Alberta, Canada.

Oncology programs across Canada are reaching capacity as more Canadians are diagnosed with and treated for cancer each year. There is an increasing need to share care with family doctors, however it is unclear how this type of care impacts patient experiences, particularly while receiving active treatment. Retrospective data from the 2021 Ambulatory Oncology Patient Satisfaction Survey (AOPSS) in Alberta, Canada was used in this study. A unique question on the Alberta survey asks patients about their family doctor's involvement during their cancer care. Patient satisfaction across the six domains of person-centred care on the AOPSS was analyzed based on how involved a patient's family doctor was. Compared to patients who indicated their family doctor was "Not involved", patients with "Very involved" family doctors had significantly higher satisfaction scores in all six domains of care. The three domains which showed the largest positive impact of family doctor involvement were: Coordination & Integration of Care, Emotional Concerns, and Information, Communication & Education. The results demonstrate that involving family doctors in cancer care can be beneficial for patients. Based on the observed satisfaction increases in this study, shared care models may be preferred by many patients. These models of care can also help alleviate strain and capacity issues within cancer programs. The results could be used to support recommendations for cancer care teams to regularly involve and communicate with family doctors, to ensure that patients receive comprehensive and tailored care from all their health care providers.

Understanding the Symptoms and Concerns of Adolescents and Young Adults with Cancer in Alberta: A Comparative Cohort Study Using Patient-Reported Outcomes.

Purpose: Adolescents and young adults (AYAs) with cancer are in a unique situation due to their age and developmental stage in life and may have different symptoms and concerns than older patients. Patient-Reported Outcomes (PROs) questionnaires, routinely used in Alberta, can help identify the distinct needs of AYAs. We aimed to compare PROs data for AYAs and older adults (OAs) to better understand how the concerns of AYAs differ, which is key to providing individualized care and creating targeted programming and system-level change. Methods: Retrospective data were collected for two patient cohorts who completed at least one PROs questionnaire between October 1, 2019 and April 1, 2020. The AYA cohort was aged 18-39, and the OA cohort was aged 40 and older. Symptoms were compared using mean scores and multiple linear regression, and concerns were compared using counts and multivariate negative binomial regression. Results: AYAs had significantly higher mean scores on depression and anxiety, compared to OAs, and lower mean scores for most physical symptoms. They indicated significantly more concerns in the Emotional and Social/Family/Spiritual domains, and were over three times more likely to indicate Work/School as a concern. Conclusion: AYAs with cancer have distinct concerns that should be addressed to ensure comprehensive, quality cancer care for this population. PROs data are useful in identifying needs and facilitating evidence-based, data-driven change at all levels of the health care system.

Understanding the Post-Treatment Concerns of Cancer Survivors with Five Common Cancers: Exploring the Alberta Results from the Pan-Canadian Transitions Study.

As the rates of cancer incidence and survival increase in Canada, more patients are living in the post-treatment survivorship phase of their cancer journey. Identifying cancer survivors' concerns and unmet needs is important so that health care teams can provide relevant information, supports, and resources. Secondary data analysis was carried out on the Alberta patient sample from the 2016 Pan-Canadian Transitions Study survey, designed by the Canadian Partnership Against Cancer. The top concerns for patients treated for five different cancers were examined descriptively and compared. A question about information that patients received post-treatment was also descriptively analyzed. Binary logistic regressions were conducted for each tumour group, using the top three concerns for each group as outcomes and a variety of demographic factors as independent variables. There were 1833 valid respondents in the Alberta sample. Fatigue and anxiety were top concerns for multiple tumour groups. Most patients received more information about treatment side effects than about signs of recurrence and community resources. Within certain tumour groups, younger patients had higher odds of having concerns, particularly anxiety. Awareness of the common and unique concerns experienced by cancer survivors post-treatment enables health care providers to tailor care and resources to help patients manage their symptoms and concerns. These findings address gaps in knowledge around the cancer survivorship phase and may be applicable to cancer programs and primary care providers in Alberta and beyond.

Symptom Burden and Complexity in the Last 12 Months of Life among Cancer Patients Choosing Medical Assistance in Dying (MAID) in Alberta, Canada.

BACKGROUND: In 2019, cancer patients comprised over 65% of all individuals who requested and received Medical Assistance in Dying (MAID) in Canada. This descriptive study sought to understand the self-reported symptom burden and complexity of cancer patients in the 12 months prior to receiving MAID in Alberta. METHODS: Between July 2017 and January 2019, 337 cancer patients received MAID in Alberta. Patient characteristics were descriptively analyzed. As such, 193 patients (57.3%) completed at least one routine symptom-reporting questionnaire in their last year of life. Mixed effects models and generalized estimating equations were utilized to examine the trajectories of individual symptoms and overall symptom complexity within the cohort over this time. RESULTS: The results revealed that all nine self-reported symptoms, and the overall symptom complexity of the cohort, increased as patients' MAID provision date approached, particularly in the last 3 months of life. While less than 20% of patients experienced high symptom complexity 12 months prior to MAID, this increased to 60% in the month of MAID provision. CONCLUSIONS: Cancer patients in this cohort experienced increased symptom burden and complexity leading up to their death. These findings could serve as a flag to clinicians to closely monitor advanced cancer patients' symptoms, and provide appropriate support and interventions as needed.

Using Autoregressive Integrated Moving Average (ARIMA) Modelling to Forecast Symptom Complexity in an Ambulatory Oncology Clinic: Harnessing Predictive Analytics and Patient-Reported Outcomes.

An increasing incidence of cancer has led to high patient volumes and time challenges in ambulatory oncology clinics. By knowing how many patients are experiencing complex care needs in advance, clinic scheduling and staff allocation adjustments could be made to provide patients with longer or shorter timeslots to address symptom complexity. In this study, we used predictive analytics to forecast the percentage of patients with high symptom complexity in one clinic population in a given time period. Autoregressive integrated moving average (ARIMA) modelling was utilized with patient-reported outcome (PRO) data and patient demographic information collected over 24 weeks. Eight additional weeks of symptom complexity data were collected and compared to assess the accuracy of the forecasting model. The predicted symptom complexity levels were compared with observation data and a mean absolute predicting error of 5.9% was determined, indicating the model's satisfactory accuracy for forecasting symptom complexity levels among patients in this clinic population. By using a larger sample and additional predictors, this model could be applied to other clinics to allow for tailored scheduling and staff allocation based on symptom complexity forecasting and inform system level models of care to improve outcomes and provide higher quality patient care.

Validating a Patient-Reported Outcomes-Derived Algorithm for Classifying Symptom Complexity Levels Among Patients With Cancer.

BACKGROUND: The patient-reported outcomes (PROs) symptom complexity algorithm, derived from self-reported symptom scores using the Edmonton Symptom Assessment System and concerns indicated on the Canadian Problem Checklist, has not been validated extensively. METHODS: This is a retrospective chart review study using data from the Alberta Cancer Registry and electronic medical records from Alberta Health Services. The sample includes patients with cancer who visited a cancer facility in Alberta, Canada, from February 2016 through November 2017 (n=1,466). RESULTS: The effect size (d=1.2) indicates that the magnitude of difference in health status between the severe- and low-complexity groups is large. The symptom complexity algorithm effectively classified subgroups of patients with cancer with distinct health status. Using Karnofsky performance status, the algorithm shows a sensitivity of 70.3%, specificity of 84.1%, positive predictive value of 79.1%, negative predictive value of 76.7%, and accuracy of 77.7%. An area under the receiver operating characteristic of 0.824 was found for the complexity algorithm, which is generally regarded as good, This same finding was also regarded as superior to the alternative algorithm generated by 2-step cluster analysis (area under the curve, 0.721). CONCLUSIONS: The validity of the PRO-derived symptom complexity algorithm is established in this study. The algorithm demonstrated satisfactory accuracy against a clinician-driven complexity assessment and a strong correlation with the known group analysis. Furthermore, the algorithm showed a higher screening capacity compared with the algorithm generated from 2-step cluster analysis, reinforcing the importance of contextualization when classifying patients' symptoms, rather than purely relying on statistical outcomes. The algorithm carries importance in clinical settings, acting as a symptom complexity flag, helping healthcare teams identify which patients may need more timely, targeted, and individualized patient symptom management.

A Cross-Sectional Analysis of Ambulatory Oncology Experience by Treatment Intent.

The Ambulatory Oncology Patient Satisfaction Survey (AOPSS) is a standardized instrument to assess the overall cancer patient experience. This study retrospectively investigated differences in care experiences and satisfaction among ambulatory oncology patients who self-identified as receiving outpatient therapies for curative intent or for symptom or disease control. This cross-sectional study analyzed data from the AOPSS collected between February and April 2019 within the provincial cancer program in Alberta, Canada. There were 2104 participants who returned the survey, representing a 52.7% response rate. This nationally validated survey gathers patient care experiences and satisfaction across six domains of person-centred care. Treatment intent was characterized by adding a new "goal of treatment" question. Statistical analysis was performed using Mann-Whitney U tests and analysis of covariance (ANCOVAs). Cancer patients' treatment goals were found to be significantly associated with key patient characteristics like age, sex, tumour group, and the locations where they received care. Patients whose self-identified goal of treatment was to cure their cancer reported significantly higher levels of satisfaction and a more positive experience in five out of the six person-centred care domains. Results identify marked differences in satisfaction and experience between these two patient groups even though they both received care in the same ambulatory environments. A better understanding of the experience and satisfaction of non-curative cancer patients could allow for a more holistic and supportive approach to patient care. In addition, an early palliative approach to care is recommended for improved patient outcomes.

Effects of a Provincial-Wide Implementation of Screening for Distress on Healthcare Professionals' Confidence and Understanding of Person-Centered Care in Oncology.

BACKGROUND: Although published studies report that screening for distress (SFD) improves the quality of care for patients with cancer, little is known about how SFD impacts healthcare professionals (HCPs). OBJECTIVES: This quality improvement project examined the impact of implementing the SFD intervention on HCPs' confidence in addressing patient distress and awareness of person-centered care. PATIENTS AND METHODS: This project involved pre-evaluation and post-evaluation of the impact of implementing SFD. A total of 254 HCPs (cohort 1) were recruited from 17 facilities across the province to complete questionnaires. SFD was then implemented at all cancer care facilities over a 10-month implementation period, after which 157 HCPs (cohort 2) completed post-implementation questionnaires. At regional and community care centers, navigators supported the integration of SFD into routine practice; therefore, the impact of navigators was examined. RESULTS: HCPs in cohort 2 reported significantly greater confidence in managing patients' distress and greater awareness about person-centered care relative to HCPs in cohort 1. HCPs at regional and community sites reported greater awareness in person-centeredness before and after the intervention, and reported fewer negative impacts of SFD relative to HCPs at tertiary sites. Caring for single or multiple tumor types was an effect modifier, with effects observed only in the HCPs treating multiple tumors. CONCLUSIONS: Implementation of SFD was beneficial for HCPs' confidence and awareness of person-centeredness. Factors comprising different models of care, such as having site-based navigators and caring for single or multiple tumors, influenced outcomes.

Evaluating the Impact of Provincial Implementation of Screening for Distress on Quality of Life, Symptom Reports, and Psychosocial Well-Being in Patients With Cancer.

BACKGROUND: Although a number of accreditation agencies and professional societies recommend routine screening for distress (SFD) for patients with cancer, it has been integrated very slowly into clinical practice. OBJECTIVES: This evaluation investigated the impact of a large-scale SFD intervention on patients' quality of life, symptom reports, and psychosocial well-being. The SFD intervention involved (1) completion of the SFD tool by patients, (2) discussion between patient and provider about the concerns indicated, and (3) provision of appropriate assessments/interventions based on priority concerns. PATIENTS AND METHODS: This quality improvement work included a pre-evaluation and postevaluation of the impact of implementation on patients' well-being. Patients in cohort 1 (N=740) were surveyed before implementation, whereas patients in cohort 2 (N=534) were surveyed 10 months after the implementation at 17 clinics province-wide. As part of the implementation, providers received training on assessing and responding to patient priority concerns with the standardized tool. RESULTS: No differences were seen in total score of quality of life between the cohorts. Fewer patients in cohort 2 than in cohort 1 reported health problems, including tiredness, drowsiness, poor appetite, nausea, anxiety, and poor well-being. Similarly, significantly fewer patients in cohort 2 endorsed problems relating to emotional, practical, informational, spiritual, social, and physical aspects of well-being. CONCLUSIONS: Results showed significantly improved psychological and physical symptoms and psychosocial well-being after routine SFD was implemented, suggesting that a large-scale SFD intervention is beneficial for patients when it is integrated into existing clinical practice and community resources.

Developing a Provincial Cancer Patient Navigation Program Utilizing a Quality Improvement Approach. Part Three: Evaluation and Outcomes.

In 2012, the provincial cancer agency in Alberta initiated a provincial quality improvement (QI) project to develop, implement, and evaluate a provincial Cancer Patient Navigation (CPN) program spanning 15 sites across over 600,000 square kilometres. This project was selected for two years of funding (April 2012-March 2014) by the Alberta Cancer Foundation (ACF) through an Enhanced Care Grant process (ACF, 2015). A series of articles has been created to capture the essence of this quality improvement (QI) project, the processes that were undertaken, the standards developed, the education framework that guided the orientation of new navigator staff, and the outcomes that were measured. The first article in this series focused on establishing the knowledge base that guided the development of this provincial navigation program and described the methodology undertaken to implement the program across 15 rural and isolated urban cancer care delivery sites. The second article delved into the education framework that was developed to guide the competency development and orientation process for the registered nurses who were hired into cancer patient navigator roles and how this framework evolved to support navigators from novices to experts. This third and final article explores the evaluation approach used and outcomes achieved through this QI project, culminating with a discussion section, which highlights key learnings, and subsequent steps that have been taken to broaden the scope and impact of the provincial navigation program.