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.

A Retrospective Age Analysis of the Ambulatory Oncology Patient Satisfaction Survey: Differences in Satisfaction across Dimensions of Person-Centred Care and Unmet Needs among Older Adults Receiving Cancer Treatment.

Over half of all new cancer cases in Alberta are diagnosed among people aged 65+ years, a group that encompasses vast variation. Patient-reported experience measures are routinely collected within Cancer Care Alberta; however, the specific consideration of the needs and concerns of older Albertans with cancer is lacking. In 2021, 2204 adults who had received treatment at a cancer centre in Alberta completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS). In this study, we explored the age differences in satisfaction across six dimensions of person-centred care and in the proportions of unmet needs across eight types of issues, with specific attention to older adults. Using three age groups (18-39, 40-64, 65+), only the physical comfort dimension showed significantly lower satisfaction among those aged 65+ years. Using five age groups (18-39, 40-64, 65-74, 75-84, 85+), significantly lower levels of satisfaction were found related to 'physical comfort' for those aged 65-74 and 75-84, 'coordination and continuity of care' for those aged 75-84 and 85+, and 'information, communication, and education' for those aged 85+. Therefore, grouping together all older adults aged 65+ years obscured lower levels of satisfaction with some dimensions of person-centred care among those aged 75-84 and 85+ years. Unmet needs generally increased with age for all types of issues, with significant differences across age groups for emotional, financial, social/family, and sexual health issues. The lower levels of satisfaction and higher proportions of unmet needs call for tailored interventions to promote optimal care experiences and outcomes among older adults receiving cancer care in Alberta and their families.

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.

Utilizing Patient Reported Outcome Measures (PROMs) in ambulatory oncology in Alberta: Digital reporting at the micro, meso and macro level.

Cancer patients experience numerous distressing symptoms and concerns across the course of their illness, which negatively influence their quality of life. Regardless of cancer type, unmanaged symptoms can lead to adverse downstream consequences. Patient Reported Outcome Measures (PROMs) can be used to inform patient care and lead to targeted symptom management but simply gathering this information does not improve outcomes for the patient. Patient generated information must be easy for the clinicians to access and interpret if it is to be used to inform care delivery in ambulatory oncology facilities. This pragmatic work responded to this need. One Canadian provincial ambulatory oncology jurisdiction implemented digital tracking of PROMs over time in the provincial Electronic Medical Record (EMR) to support full integration of PROMs into standard care workflows and processes. Due to an inability within the EMR for direct patient entry, a hybrid data-entry was designed where the patient completes a paper-based PROM in the waiting room, and after clinical review, a clinician documents this along with their clinical assessment in the EMR. Several digital dashboards were developed which report PROMs data at the micro (individual), meso (clinic) and macro (program) levels. Using PROMs routinely in these provincial practice settings has numerous benefits including enhanced patient-clinician communication, assisting with problem detection, management of symptoms, and improving outcomes for patients. There are over 60,000 unique patients represented in our PROMs database, and over 300,000 unique screening events captured. The PROMs data is now used at all levels of the provincial cancer jurisdiction to provide targeted person centred care (micro), to staff appropriately at a clinic or program level (meso), and for capacity planning for provincial programs (macro). A new provincial EMR is currently being implemented which has an associated patient portal. Based on the success of this work, integration of direct entry of PROMs by the patient prior to the appointment and an associated workflow for symptom management is underway in this jurisdiction.

Virtual Cancer Care During the COVID-19 Pandemic in Alberta: Evidence From a Mixed Methods Evaluation and Key Learnings.

PURPOSE: This study reports on a mixed methods evaluation conducted within a provincial cancer program in Alberta, Canada. The purpose was to capture key learnings from a rapid virtual care implementation because of the COVID-19 pandemic and to understand the impact on patient and staff experiences. METHODS: Administrative data were collected for 21,362 patients who had at least one virtual or in-person visit to any provincial cancer center from April 1, 2020, to June 10, 2020. Patient surveys were conducted with 397 randomly selected patients who had received a virtual visit. Surveys were also conducted with 396 Cancer Care Alberta staff. RESULTS: 14,906 virtual visits took place in this period, and about 40% of weekly visits were virtual. Significant differences were observed in both patient-reported symptom questionnaire completion rates and referrals to supportive care services between patients seen in-person and virtually. Patients receiving active treatments reported significantly lower levels of satisfaction with virtual visits than those seen for follow-up, but overall 90% of patients indicated interest in receiving virtual care in the future. Staff thought virtual visits increased patients' access to care but less than one third (31.5%) felt confident meeting patients' emotional needs and having conversations about disease progression and/or end of life virtually. CONCLUSION: The COVID-19 pandemic has driven the rapid implementation of virtual visits for cancer care delivery in health care settings. The findings from this mixed methods evaluation provide a concrete set of considerations for organizations looking to develop a large-scale, enduring virtual care strategy.

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.