Revised Edmonton Symptom Assessment System Research Articles

The Edmonton Symptom Assessment System is a valid, reliable, and responsive tool to assess symptom burden in decompensated cirrhosis.

While there is a growing need for interventions addressing symptom burden in patients with decompensated cirrhosis (DC), the lack of validated symptom assessment tools is a critical barrier. We investigated the psychometric properties of the revised Edmonton Symptom Assessment System (ESAS-r) in a longitudinal cohort of patients with DC. Adult outpatients with DC were prospectively recruited from a liver transplant center and completed ESAS-r at baseline and week 12. We examined reliability, floor/ceiling effects, structural validity, and known-groups validity. We examined the convergent and predictive validity of ESAS-r with health-related quality of life using the Short Form Liver Disease Quality of Life (SF-LDQOL) and responsiveness to changes in anxiety and depression using the Hospital Anxiety and Depression Scale and Patient Health Questionnaire-9 from baseline to week 12. From August 2018 to September 2022, 218 patients (9% Child-Pugh A, 59% Child-Pugh B, and 32% Child-Pugh C) were prospectively recruited and completed the ESAS-r, SF-LDQOL, Patient Health Questionnaire-9, and Hospital Anxiety and Depression Scale at baseline and week 12 (n = 135). ESAS-r had strong reliability (Cronbach's alpha 0.86), structural validity (comparative fit index 0.95), known-groups validity (Child-Pugh A: 25.1 vs. B: 37.5 vs. C: 41.4, p = 0.006), and convergent validity (r = -0.67 with SF-LDQOL). Floor effects were 9% and ceiling effects were 0.5%. Changes in ESAS-r scores from baseline to week 12 significantly predicted changes in SF-LDQOL (β = -0.36, p < 0.001), accounting for 30% of the variation. ESAS-r was strongly responsive to clinically meaningful changes in SF-LDQOL, Patient Health Questionnaire-9, and Hospital Anxiety and Depression Scale. ESAS-r is a reliable, valid, and responsive tool for assessing symptom burden in patients with DC and can predict changes in health-related quality of life. Future directions include its implementation as a key outcome measure in cirrhosis care and clinical trials.

Music Therapy Intervention to Reduce Symptom Burden in Hospice Patients: A Descriptive Study.

Background: Music therapy (MT) offers benefits of improved symptom relief and quality of life at the end of life, but its impact on hospice patients and caregivers needs more research. Objective: To assess the impact of MT intervention on symptom burden and well-being of hospice patients and caregivers. Methods: A total of 18 hospice patients, selected based on scores ≥4 on the revised Edmonton Symptom Assessment System (ESAS-r) items on pain, depression, anxiety, or well-being, participated in MT sessions provided by a board-certified music therapist. Over a period of 2-3weeks, 3-4MT sessions were conducted for each. Patient Quality of life (QOL) was assessed using the Linear Analogue Self-Assessment (LASA). Depression and anxiety were measured with the Patient Health Questionnaire-4 (PHQ-4). For the 7 caregivers enrolled, stress levels were measured using the Pearlin role overload measure and LASA. Results: Patients reported a reduction in symptom severity and emotional distress and an increase in QOL. All patients endorsed satisfaction with music therapy, describing it as particularly beneficial for stress relief, relaxation, spiritual support, emotional support, and well-being. Scores on overall QOL and stress were worse for caregivers. Conclusion: This study provides evidence that MT reduces symptom burden and enhances the quality of life for hospice patients. Hospice patients and their caregivers endorsed satisfaction with MT. Given the benefits observed, integrating MT into hospice care regimens could potentially improve patient and caregiver outcomes. Larger studies should be conducted to better assess the impact of MT in this population.

Supportive Digital Health Service During Cancer Chemotherapy: Single-Arm Before-and-After Feasibility Study.

Digital supportive cancer care is recommended to improve patient outcomes. A portal was designed and embedded within the electronic medical record and public health portal of Iceland, consisting of symptom and needs monitoring, educational material, and messaging. This study aims to assess (1) portal feasibility (adoption, engagement, usability, and acceptability), (2) potential predictors of usability and acceptability, and (3) the potential impact of the portal on patient-reported outcomes. This was a single-arm, before-and-after feasibility study at a university hospital among patients with cancer who were undergoing chemotherapy. Participation included filling out the Edmonton Symptom Assessment System-Revised (ESASr) weekly and the Distress Thermometer and Problem List (DT&PL) 3 times; reading educational material and messaging; and completing study questionnaires. Clinical and portal engagement data were collected from medical records. Data from patients were collected electronically at baseline and 7 to 10 days after the third chemotherapy round. Usability was assessed using the System Usability Scale (score 0-100), and acceptability was assessed using a 35-item survey (score 1-5). Patient-reported outcome measures included ESASr and DT&PL; a single-item scale for quality of life, family support, and quality of care; and multi-item scales for health literacy (Brief Health Literacy Screener), health engagement (Patient Health Engagement Scale), self-care self-efficacy (Self-Care Self-Efficacy scale), symptom interference (MD Anderson Symptom Inventory), knowledge expectations (Hospital Patients' Knowledge Expectations), and received knowledge (Hospital Patients' Received Knowledge). Health care professionals were interviewed regarding portal feasibility. The portal adoption rate was 72% (103/143), and the portal use rate was 76.7% (79/103) over a mean 8.6 (SD 2.7) weeks. The study completion rate was 67% (69/103). The combined completion rate of the ESASr and DT&PL was 78.4% (685/874). Patients received a mean 41 (SD 13) information leaflets; 33% (26/79) initiated messaging, 73% (58/79) received messages, and 85% (67/79) received follow-up phone calls. The mean System Usability Scale score was 72.3 (SD 14.7), indicating good usability. Usability was predicted by age (β=-.45), ESASr engagement (β=.5), symptom interference (β=.4), and received knowledge (β=.41). The mean acceptability score, 3.97 (SD 0.5), was above average and predicted by age (β=-.31), ESASr engagement (β=.37), symptom interference (β=.60), self-care self-efficacy (β=.37), and received knowledge (β=.41). ESASr scores improved for total symptom distress (P=.003; Cohen d=0.36), physical symptoms (P=.01; Cohen d=0.31), and emotional symptoms (P=.01; Cohen d=0.31). Daily symptom interference increased (P=.03; Cohen d=0.28), quality of life improved (P=.03; Cohen d=0.27) and health engagement (P=.006; Cohen d=0.35) improved, while knowledge expectations decreased (P≤.001; Cohen d=2.57). Health care professionals were positive toward the portal but called for clearer role delineation and follow-up. This study supports the feasibility of a support portal and the results indicate the possibility of improving patient outcomes, but further developments are warranted.

OP23 Early Detection Tools For Emotional Distress In Adult Cancer Patients In Spain: A Health Technology Assessment Report

IntroductionPatient-reported outcome measures are being increasingly considered both in clinical practice and in the field of health technology assessment. Although emotional distress is currently recognized as the sixth vital sign in cancer care, its early detection and screening is not yet included in routine clinical practice in Spain. The main objective of this study was to assess the psychometric properties and diagnostic accuracy of validated tools for the early detection of distress among adults with cancer in the Spanish context, at the request of the Spanish National Health System (NHS) Cancer Strategy.MethodsA systematic review was carried out to analyze development and validation studies. The Quality Assessment of Diagnostic Accuracy Studies tool (QUADAS-2) was used for the risk of bias assessment, and a multicriteria global assessment was used for the tests. Ethical and organizational aspects were also addressed.ResultsFifteen validation studies were included, corresponding to seven tests. The tools considered were the Distress Thermometer (DT), the Brief Symptom Inventory-18 (BSI-18), the Edmonton Symptom Assessment System-revised (ESAS-r), the Hospital Anxiety and Depression Scale (HADS), the Visual Analog Scale for Anxiety and Depression (VAS-AD), the Detection of Emotional Distress (DED) scale, and the Psychosocial and Spiritual Needs Evaluation (ENP-E) scale. Evidence of validity, reliability (internal consistency), and diagnostic accuracy (sensitivity, specificity, and area under the receiver operating characteristic curve) were summarized. Three scales were rated as poor (VAS-AD, BSI-18, and ESAS-r), the ENP-E scale was rated as acceptable, and three scales were rated as moderate (DT, DED, and HADS).ConclusionsThe DT (single-item measure) stands out as an appropriate tool for early detection of emotional distress in the Spanish NHS. The use of this scale could be considered a first stage, to be combined later with a longer scale to improve screening specificity. The HADS scale could be utilized for this purpose. The use of these tools should be framed within a structured screening program that ensures further evaluation and subsequent psychological care when needed.

Symptom severity and trajectories among adolescent and young adult patients with cancer.

Patients with cancer experience significant symptom burden. We investigated symptom severity in adolescents and young adults (18- to 39-year-olds) during the year following a cancer diagnosis and made comparisons with older adult (those older than 40 years of age) patients with cancer. All Albertan residents diagnosed with a first primary neoplasm at 18years of age or older between April 1, 2018, and December 31, 2019, and who completed at least 1 electronic patient-reported outcome questionnaire were included. Symptom severity was assessed using the Edmonton Symptom Assessment System-revised. Descriptive statistics, multivariable logistic modeling, and mixed logistic regression modeling were used to describe symptom severity, identify risk factors, and assess symptom trajectories, respectively. In total, 473 and 322 adolescents and young adults completed a patient-reported outcomes questionnaire at diagnosis and 1 year after diagnosis, respectively. Adolescent and young adult patients with cancer reported high levels of tiredness, poor well-being, and anxiety. Important risk factors included metastatic disease, female sex, treatment types received, and age at diagnosis. Symptom severity varied by clinical tumor group, with those diagnosed with sarcoma having the worst scores for all symptoms at diagnosis and patients with intrathoracic or endocrine tumors having the worst scores for all symptoms at 1 year after diagnosis. Statistically significant differences in symptom severity over the 1-year period were observed between adolescents and young adults and older adults-specifically, the odds of having moderate to severe symptoms were statistically significantly greater among adolescents and young adults with respect to pain, tiredness, nausea, depression, anxiety, and poor well-being (all P < .01). A substantial proportion of adolescents and young adults experience moderate to severe symptoms during the year following diagnosis. Modifying existing supportive services and developing interventions based on the needs of adolescent and young adult patients with cancer could aid symptom control.

Assessment of emotional distress in palliative care: Edmonton Symptom Assessment System-revised (ESAS-r) vs Distress Thermometer.

To evaluate the sensitivity and specificity of the Distress Thermometer (DT) as a screening tool for emotional distress in oncological palliative care patients and to compare the DT with the Edmonton Symptom Assessment System-revised (ESAS-r) and the gold standard to determine the most appropriate assessment method in palliative psychological care. Data were collected from psychological screening tests (ESAS-r and DT), and clinical interviews (gold standard) were conducted by a clinical psychologist specialist in palliative oncology from January 2021 to January 2022 in an oncology palliative care service. The sample consisted of 356 first-time patients with a diagnosis of advanced cancer in palliative care. The most frequently reported oncological diagnoses were gastrointestinal tract (49.3%) and breast (18.3%). Most patients were female (n=206; 57.9%), 60.4% were married/with a partner, 55.4% had between 6 and 9years of schooling, and a median age of 57 (range, 46-65) years. The cutoff of the DT was 5, with a sensitivity of 75.88% and specificity of 54.3%. Emotional problems (sadness and nervousness) had a greater area under the curve (AUC) when measured using the DT than the ESAS-r; however, only in the case of the comparative sadness and discouragement was the difference between the AUC marginally significant. The use of the DT as a screening tool in oncological palliative care is more effective in the evaluation of psychological needs than the ESAS-r. The DT, in addition to evaluation by an expert psychologist, allows for a more comprehensive identification of signs and symptoms to yield an accurate mental health diagnosis based on the International Classification of Diseases-11th Revision and/or Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition.

Engaging Ambulatory Cancer Patients to Develop and Validate a Comprehensive New Patient-Reported Outcomes Measure

The ambulatory cancer program in Alberta, Canada routinely collects Patient-Reported Outcomes (PROs) using a common symptom rating measure, the Edmonton Symptom Assessment System-Revised (ESAS-r). The purpose of this study was to redesign, test, and validate a modified ESAS-r (the ESAS-r Cancer) for use in the province's new clinical information system and online patient portal. Patient advisors participated in regular meetings to redesign the measure, creating expanded definitions for the original symptoms and new symptoms, added based on trends identified in our historical PRO data. To test the modified measure, patient advisors first completed the measure online to test the feasibility of remote electronic completion. Next, the advisors participated in cognitive interviews to discuss and finalize the wording of each symptom definition for clarity. To test the validity and reliability of the finalized measure, 1600 randomly sampled patients were mailed paper copies of the ESAS-r Cancer, ESAS-r, and a validated PRO measure called the Memorial System Assessment Scale-Short Form (MSAS-SF), which is often used with cancer patients. 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 gold standard. Cronbach's α was calculated to assess reliability. The nine original ESAS-r symptoms were retained and six new symptoms were added to create the ESAS-r Cancer. All but one of the 26 patient advisors (96.2%) who completed the online measure did so without assistance. After two rounds of cognitive interviews all symptom definitions were finalized and deemed clear by almost all advisors. 461 patients (29% response rate) completed all three questionnaires. Using MSAS-SF as the gold standard, ESAS-r Cancer showed stronger canonical correlation than ESAS-r, indicating higher concurrent validity and fitting degree. ESAS-r Cancer also accounted for more information included on MSAS-SF than did ESAS-r, explaining more variance (75.2% vs. 73.5%). As revealed by factor analysis, the three-dimensional factor structure of ESAS-r Cancer outperformed the two-dimensional factor structure of ESAS-r, by allowing for new constructs within measurement. The reliability of ESAS-r Cancer was verified (Cronbach's α = .903, > threshold of 0.8) and slightly higher than ESAS-r (Cronbach's α = .884). ESAS-r Cancer is now in use with patients throughout Alberta's cancer program. The redesign, testing, and validation process involved patient engagement throughout. Patient testing and perspectives were critical as ESAS-r Cancer is intended for use with ambulatory cancer patients. ESAS-r Cancer can help ensure patients are included in care decisions and that their perspectives are involved in guiding care.

Optimization of Workup Pathways to Decrease Radiotherapy Wait Times and Improving Patient Experience: A Single Centre Study

Wait-times are challenging for certain radiotherapy (RT) centers, and benchmarking is challenging, given the different standards used. Beyond the standards of referral to consult and consult to treatment, certain centers have established a "ready-to-treat" (RTT) definition to address the reality of patients requiring further investigations from consult to enable a treatment plan. In this single RT center study, a Timely Access and Patient Support (TAPS) model of care has been implemented aiming to improve access to care and, ultimately, patient outcomes. Thiscomparative cohort study was conducted in a single mid-size RT center serving mainly rural communities as part of a larger multi-center academic institution. In collaboration with a Radiation Oncologist (RO), the TAPS clinic is run by a Nurse Practitioner who provides patient assessment and submits requisitions to ensure the patient has support services and is RTT by the time of RO consult. All newly suspected/diagnosed adult cancer patients referred to the center with a triage priority of ≥2 weeks were eligible. Non-metastatic breast and prostate cancers were excluded. Retrospective and prospective data were collected from patient medical records, and descriptive statistical analysis was performed. Pre- and post-TAPS clinic comparison was made for wait times and patient-reported outcomes (PROs) using the Edmonton Symptom Assessment System-revised. During the first 6 months of the study, 66 eligible patients were assessed in the TAPS clinic, prompting 177 orders including referrals (52%) (top 3: social worker 30%, dietitian 20%, and cancer patient navigator 11%), investigations (27%) (top 3: CT 21%, MRI 19%, and biopsy 25%), and interventions (21%). The most common cancers were thoracic (33%), GI (23%) and head and neck (14%). The mean wait time from referral to TAPS consult was 5 days compared to 15 days for pre-TAPS patients to be seen in RO consult. The mean wait time from referral to RTT was 33 days VS 40 days in the post- VS pre-TAPS setting.71% of post-TAPS patients were RTT at RO consult compared with 43% pre-TAPS. Post-TAPS patients reported less fatigue and anxiety and better overall well-being during CT simulation compared to pre-TAPS patients. Preliminary data of TAPS clinic implementation has shown the potential to positively impact RTT times and PROs for psychosocial distress by the time of RT planning. This data also sheds light on the topic of wait time definitions, the investigations required before RTT and the potential role of physician extenders within the health care team to facilitate accelerated workup of malignancies. While TAPS study data will help to inform local cancer care program operations, it is also considered relevant to the broader RT community and professional RT societies addressing standards related to RT access.

Age-related differences in symptom distress among patients with cancer

IntroductionDifferences in symptom distress among older (age 65–74) and very old (age 75+) patients with cancer, compared to younger patients, remain to be well explored. These differences are important to understand given the heterogeneity of older populations and may have implications for age-appropriate symptom detection and management. Materials and MethodsWe examined routinely collected Edmonton Symptom Assessment System Revised (ESAS-r) scores from 9,143 patients age 40+ initiating chemotherapy for solid malignancies at a single academic cancer centre, between September 2011 and May 2019. We used multivariable logistic regression models to determine associations between the most common symptoms and age group (ages 40–64, 65–74, 75–84, and 85+), cancer site, clinical stage, sex, and income levels. We focused our findings on patients with the five most common cancers, breast (n = 1,532), prostate (n = 923), lung (n = 889), pancreatic (n = 429), and colorectal (n = 368), prior to receiving treatment. ResultsWithin our sample, 58.0% were age 40–64, 27.3% age 65–74, 11.8% age 75–84, and 2.9% age 85+. Among the nine symptoms in the ESAS-r (anxiety, depression, tiredness, wellbeing, nausea, pain, drowsiness, appetite, and shortness of breath), the most common symptoms overall were anxiety (moderate-severe scores [ESAS-r 4 or higher] were reported by 33.8% of patients), lack of well-being (38.3%), and tiredness (38.3%). Older age was associated with lower odds of moderate/severe anxiety (odds ratio [OR] 0.81, 95% confidence interval [CI] 0.73–0.90 for age 65–74; OR 0.81, 95%CI 0.70–0.93 for age 75–84; OR 0.62, 95%CI 0.47–0.82 for age 85+; referent is 40–64-year-olds for all analyses), and increased odds of tiredness (OR 1.00, 95%CI 0.90–1.11 for age 65–74; OR 1.19, 95%CI 1.04–1.37 for age 75–84; and OR 1.34, 95%CI 1.04–1.72 for age 85+). Advanced stage, female sex, and lower income levels were associated with higher odds of moderate/severe tiredness, anxiety, and lack of well-being in adjusted models. Patients with pancreatic and lung cancers reported worse scores for these three symptoms than patients with other cancers. DiscussionOlder age was associated with differences in symptom experiences such as increased tiredness and reduced anxiety. Supportive care interventions and future research should focus on addressing these symptoms to improve patient quality of life.

Original Research: Can a Palliative Care Lay Health Advisor–Nurse Partnership Improve Health Equity for Latinos with Cancer?

ABSTRACT Purpose: A palliative care infrastructure is lacking for Latinos with life-threatening illness, especially in rural regions of the United States. The purpose of this study was to develop and evaluate a community-based palliative care lay health advisor (LHA) intervention for rural-dwelling Latino adults with cancer. Methods: An exploratory mixed-methods participatory action research design was carried out by an interprofessional research team that included community and academic members. Fifteen Latino community leaders completed a 10-hour palliative care training program and then served as palliative care LHAs. Although 45 Latinos with cancer initially agreed to participate, four withdrew or died and six were not reachable by the LHAs, for a final total of 35 patient participants. The trained palliative care LHAs delivered information on home symptom management and advance care planning to assigned participants. Palliative care nurses led the training and were available to the LHAs for consultation throughout the study. The LHAs made an average of three telephone calls to each participant. The Edmonton Symptom Assessment System–Revised (ESAS-r) and the four-item Advance Care Planning Engagement Survey (ACPES-4) were administered pre- and postintervention to determine the intervention's effectiveness. Encounter forms were transcribed, coded, and analyzed using case comparison. Results: The major finding was that significant improvements were shown for all four items of the ACPES-4 among both the LHAs (posttraining) and the participants (postintervention). Information on advance care planning was shared with 74.3% of the 35 participants. Participants showed clinical improvement in physical symptom scores and clinical deterioration in emotional symptom scores following the intervention, although these changes did not reach statistical significance. The advisors noted that participants were anxious about how to explain cancer to children, the uncertainty of their prognosis, and medical expenses. This sample was younger than those of other cancer studies; 51.4% were under age 50 and 73.1% had at least one child in the home. Conclusions: A community-based palliative care LHA–nurse partnership was shown to be a feasible way to engage in conversations and deliver information about advance care planning to rural-dwelling Latino adults with cancer. The positive results led to the regional cancer center's decision to select “cultural care” as its 2022 goal for maintaining its accreditation with the Commission on Cancer.

Medical cannabis is effective for cancer-related pain: Quebec Cannabis Registry results

ObjectivesTo evaluate the safety and effectiveness of medical cannabis (MC) in reducing pain and concurrent medications in patients with cancer.MethodsThis study analysed data collected from patients with cancer who were...

Evaluation of the validity and screening performance of a revised single-item fear of cancer recurrence screening measure (FCR-1r).

Fear of cancer recurrence (FCR) is highly prevalent among cancer survivors, but irregularly identified in practice. Single-item FCR measures suitable for integration into broader psychosocial screening are needed. This study evaluated the validity of a revised version of the original FCR-1 (FCR-1r) and screening performance alongside the Edmonton Symptom Assessment System - Revised (ESAS-r) anxiety item. The FCR-1r was adapted from the FCR-1 and modelled on the ESAS-r. Associations between FCR-1r and FCR Inventory-Short Form (FCRI-SF) scores determined concurrent validity. Relationships of FCR-1r scores with variables related (e.g., anxiety, intrusive thoughts) and unrelated (e.g., employment/marital status) to FCR determined convergent and divergent validity respectively. A Receiver-Operating Characteristic analysis examined screening performance and cut-offs for the FCR-1r and ESAS-r anxiety item. 107 participants were recruited in two studies (Study 1, July-October 2021, n=54; Study 2: November 2021-May 2022, n=53). The FCR-1r demonstrated concurrent validity against the FCRI-SF (r=0.83, p<0.0001) and convergent validity versus the Generalised Anxiety Disorder-7 (r=0.63, p<0.0001) and Impact of Event Scale-Revised Intrusion subscale (r=0.55, p<0.0001). It did not correlate with unrelated variables (e.g., employment/marital status), indicating divergent validity. An FCR-1r cut-off ≥5/10 had 95% sensitivity and 77% specificity for detecting clinical FCR (area under the curve (AUC)=0.91, 95% CI 0.85-0.97, p<0.0001); ESAS-r anxiety cut-off ≥4 had 91% sensitivity and 82% specificity (AUC=0.87, 95% CI 0.77-0.98, p<0.0001). The FCR-1r is a valid and accurate tool for FCR screening. Further evaluation of the screening performance of the FCR-1r versus the ESAS-r anxiety item in routine care is needed.

Prevalence, severity, and predictors of symptom burden among adolescents and young adults with cancer.

Symptom burden in adolescents and young adults (AYA) with cancer is poorly characterized but impacts quality of life. All Ontario, Canada AYA aged 15-29 years at diagnosis between 2010 and 2018 were linked to population-based healthcare databases, including to Edmonton Symptom Assessment System-revised (ESAS) scores, an 11-point scale routinely obtained at the time of cancer-related outpatient visits and collected provincially. Multistate models estimated mean duration of symptom severity states [none (0) vs. mild (1 vs. 2 vs. 3) vs. moderate (4-6) vs. severe (7-10)], trajectories, and subsequent mortality risk. Variables associated with severe symptoms were also determined. In total, 4296 AYA with ≥1 ESAS score within a year of diagnosis were included (median age 25 years). Prevalent moderate/severe symptoms included fatigue (59% of AYA) and anxiety (44%). Across symptom type, AYA reporting moderate symptoms were likelier to subsequently experience improvement versus worsening. Risk of death within 6months increased with increasing symptom burden and was highest in AYA with severe dyspnea (9.0%), pain (8.0%), or drowsiness (7.5%). AYA in the poorest urban neighborhoods were more likely to experience severe symptoms than in the wealthiest areas, with twice the odds of reporting severe depression [adjusted odds ratio (OR) 1.95, 95th confidence interval (95% CI) 1.37-2.78], pain (OR: 1.94, 95% CI: 1.39-2.70), and dyspnea (OR: 1.96, 95% CI: 1.27-3.02). AYA with cancer experience substantial symptom burden. Risk of death increased with symptom severity. Interventions targeting cancer fatigue and anxiety, and targeting AYA in lower-income neighborhoods, are likely to improve quality of life in this population.

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

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. 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. 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. 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.

The Quebec Cannabis Registry: Investigating the Safety and Effectiveness of Medical Cannabis.

Objective: To investigate the safety and effectiveness of medical cannabis (MC) in the real-world clinical practice setting. Design: A 4-year prospective noncomparative registry of adult patients who initiated MC for a variety of indications. This paper reports on patients followed for up to 12 months, with interim visits at 3, 6, and 9 months after enrollment. Setting: Public or private outpatient clinics certified to authorize MC in the province of Quebec, Canada. Participants: Overall, 2991 adult (age ≥18 years) patients (mean age 51 years; 50.2% women) were enrolled between May 2015 and October 2018, with the last follow-up ending in May 2019. Interventions/Exposures: Cannabis products (dried, oil, or other) purchased from a Canadian licensed cannabis producer as authorized by physicians. Main Outcome Measures: The primary outcomes were self-reported pain severity, interference and relief (Brief Pain Inventory [BPI]), symptoms using the Revised Edmonton Symptom Assessment System (ESAS-r) and health-related quality of life dimensions (EQ-5D-5L) at baseline and each follow-up visit. The secondary outcomes were self-reported adverse events (AEs) and characteristics of cannabis treatment. Results: All patient-reported outcomes (BPI, ESAS-r, and EQ-5D-5L) showed a statistically significant improvement at 3 months (all p<0.01), which was maintained or further improved (for pain interference, tiredness, and well-being) over the remainder of the 12-month follow-up. Results also revealed clinically significant improvements in pain interference and tiredness, anxiety, and well-being from baseline. There were 79 AE reports (77 patients), 16 met the regulatory definition of seriousness, in which only 8 AEs were certainly or probably related to MC. Conclusions: MC directed by physicians appears to be safe and effective within 3 months of initiation for a variety of medical indications.

Prevalence, Severity, Trajectory, and Predictors of Symptom Burdens Among Adolescents and Young Adults with Hodgkin Lymphoma: A Population-Based Cohort Study

Background: Though adolescents and young adults (AYA) with Hodgkin lymphoma (HL) experience high cure rates, previous studies suggest that this population experiences significant symptom burdens which contribute to poor quality of life. We thus aimed to characterize the prevalence, trajectory, and predictors of symptom burdens among a population-based cohort of AYA with HL. Methods: All Ontario, Canada AYA aged 15-29 years with a HL diagnosis between 2010-2018 were identified and linked to population-based healthcare databases. Symptom burdens were determined through linkage to Edmonton Symptom Assessment System-Revised (ESAS-r) scores, routinely obtained from Ontario cancer patients at the time of outpatient visits and collected provincially. For each symptom, multistate transition models estimated mean single-stay duration of specific severity states [none (0) vs. mild (1 vs. 2 vs. 3) vs. moderate (4-6) vs. severe (7-9)], trajectories, and associations with death. Logistic regression models determined patient, disease, and treatment-related variables associated with experiencing severe symptoms within the first year of diagnosis. Results: 672 AYA with HL and at least one ESAS-r score were included in the cohort, with a median age of 23 years [interquartile range (IQR) 21-26 years] and of whom 339 (50.4%) were male. The median number of ESAS scores in the first year of diagnosis was 9 (IQR 4-13). The most prevalent moderate or severe symptom was fatigue, impacting 66.1% of AYA during the first year after diagnosis. Moderate or severe fatigue remained prevalent throughout the year, and was reported by 48/214 (22.4%) ESAS-r screens in the last six weeks of the year. Severe fatigue was experienced by 29.8% of AYA, and was reported by 19/214 (8.9%) ESAS-r screens in the last six weeks of the year. Other prevalent moderate or severe symptoms included drowsiness (48.8% of AYA), anxiety (46.1%) and poor appetite (44.3%). Anxiety and fatigue were associated with the longest mean sojourn time in the severe state (0.8 months and 0.7 months respectively). Overall, AYA experiencing moderate symptoms were more likely to subsequently experience improvement vs. worsening symptoms. Female AYA were more likely to experience moderate or severe levels of most symptoms compared to males. For example, females were approximately twice as likely to report severe anxiety [adjusted odds ratio (aOR) 1.99, 95th confidence interval (95CI) 1.22-3.23], nausea (aOR 2.19, 95CI 1.13-4.25), and fatigue (aOR 1.69, 95CI 1.20-2.37). Presenting disease stage was not associated with severity of symptom burden for any symptom. Encouragingly, no consistent disparities in symptom burden were seen among AYA living in rural or poor urban neighborhoods, compared to AYA living in the richest urban neighbourhoods. Similarly, no consistent disparities were observed among AYA living in Northern Ontario. However, one exception to this broadly positive trend was that AYA in the poorest urban areas were more likely to report severe pain (aOR 2.93, 95CI 1.32-6.49). Conclusions: AYA with HL experience substantial symptom burdens. Cancer-related fatigue and anxiety are particularly prevalent both during and after treatment. Interventions targeting these symptoms are likely to have the most impact in improving quality of life in this population, particularly those that account for sex-based differences in reporting and prevalence.

Association between tumor response to systemic therapy and patient-reported disease symptoms.

The association of treatment-induced tumor shrinkage with symptom palliation for patients with lung cancer remains unknown. We investigated this correlation using the Edmonton Symptom Assessment System-Revised. Using the in-hospital cancer registry, we identified patients receiving chemotherapy and/or immunotherapy for newly diagnosed advanced or metastatic lung cancer. Tumor response and post-treatment Edmonton Symptom Assessment System-Revised were obtained after 2-3 treatment cycles. Patients were divided into groups with or without >30% unidirectional tumor shrinkage (objective response [OR] or non-OR [N-OR] groups, respectively). They were further classified as good-objective response (>50% unidirectional tumor shrinkage), moderate-objective response (30-50% shrinkage), progressive disease (>20% tumor growth or new lesion) or stable disease (SD; N-objective response and non-progressive disease). The primary endpoint was change in the total Edmonton Symptom Assessment System-Revised score from baseline. The Mann-Whitney U test was used for analysis. In total, 113 patients were enrolled. The total Edmonton Symptom Assessment System-Revised score was significantly more improved in the OR group versus the N-OR group (median: 5 vs. 2, respectively; P=0.013). This association was more prominent in patients with small-cell lung cancer and large-cell neuroendocrine tumor than those with other histology. Sensitivity analyses showed that the total Edmonton Symptom Assessment System-Revised score was more improved in the OR group versus the SD group (median: 5 vs. 3, respectively; P=0.029) and in the 'good-OR' group versus the 'moderate-OR and SD' group (median: 7.5 vs. 2, respectively; P=0.003), suggesting that greater tumor shrinkage led to more symptom amelioration. Tumor shrinkage was associated with Edmonton Symptom Assessment System-Revised score improvement in patients with lung cancer receiving systemic therapy.

Comprehensive assessment during palliative radiotherapy consultation optimizes supportive care for patients with advanced breast cancer.

Palliative radiotherapy (PRT) in advanced cancer improves symptom control and quality of life. PRT consultations take place in various clinical settings, including through dedicated rapid access clinics. We examined holistic assessment and PRT delivery by consultation setting. We analyzed patients with breast cancer who died (01/04/2013-31/03/2014), after at least one lifetime PRT consultation. Data abstracted included Karnofsky Performance Status (KPS), Edmonton Symptom Assessment System Revised (ESAS-r) ratings, and PRT timelines. Descriptive statistics, t tests of proportions, independent t tests, and chi-square tests were calculated. One hundred thirty patients were assessed for PRT over 224 consults, 28/224 (12.5%) in the rapid access clinic. In non-rapid access versus rapid access visits, KPS was documented in 30.1% versus 89.3%, and medication history in 53.6% versus 96.4%, respectively (both p < 0.0001). Baseline ESAS-r scores were available for 67.9% of rapid access visits, versus no non-rapid access visit. Rapid access consults had a higher proportion of subsequent supportive care referrals (46.4% versus 8.2%; p < 0.0001). Same day PRT start occurred in 37% of rapid access versus 23.4% of non-rapid access visits (p = 0.13). Assessment for PRT by a dedicated multidisciplinary team provides a comprehensive picture of patient needs and streamlines PRT delivery, essential to personalizing supportive care.

Sex differences exist in the perceived relief of cancer symptoms with medical cannabis: results from the Quebec Cannabis Registry

This study explored whether symptom relief differs by sex in patients with cancer receiving medical cannabis (MC) therapy. This is an analysis of data collected from patients with cancer enrolled in the Quebec Cannabis Registry. MC was initiated for the therapeutic management of cancer symptoms. Patients completed the revised Edmonton Symptom Assessment System (ESAS-r) questionnaire at baseline and 3-month follow-up. We examined the interaction between sex and time on each ESAS-r symptom and the interaction between time and tetrahydrocannabinol:cannabidiol (THC:CBD) ratios for each sex on total symptom burden. The analysis included 358 patients (M: 171). There were no sex differences in baseline ESAS-r scores. Three months of MC therapy led to significant improvements in pain (M: - 1.4 ± 0.3, p < 0.001; F: - 1.1 ± 0.3, p < 0.01), tiredness (M: - 1.7 ± 0.4, p < 0.001; F: - 1.2 ± 0.4, p < 0.05), anxiety (M: - 1.1 ± 0.4, p < 0.05; F: - 1.2 ± 0.4, p < 0.001), and well-being (M: - 1.2 ± 0.4, p < 0.05; F: - 1.4 ± 0.4, p < 0.01) in both sexes. Only F perceived improved drowsiness (- 1.1 ± 0.4, p < 0.05), nausea (- 0.9 ± 0.3, p < 0.05), lack of appetite (- 1.7 ± 0.4, p < 0.001), and shortness of breath (- 0.9 ± 0.3, p < 0.05). From baseline to 3-month follow-up, THC-dominant MC significantly reduced pain (- 1.52 ± 0.52, p < 0.05) in M, whereas in F it diminished nausea (- 2.52 ± 0.70, p < 0.01) and improved well-being (- 2.41 ± 0.79, p < 0.05). THC:CBD-balanced products significantly reduced pain (- 1.48 ± 0.49, p < 0.05), tiredness (- 1.82 ± 0.62, p < 0.05), anxiety (- 1.83 ± 0.54, p < 0.05), and improved well-being (- 2.01 ± 0.56, p < 0.01) in M. CBD-dominant products did not offer significant symptom relief in either sex. The perceived relief of cancer symptoms from MC differs between sexes. More randomized controlled trials are needed to confirm our findings.

Palliative care organization and staffing models in residential hospices: Which makes the difference?

BackgroundThe number of patients using palliative care services, particularly residential hospices, is increasing. Policymakers are urging these services to reflect on the most effective organizational strategies for meeting patients’ complex care needs. AimTo analyze the predictive power of staffing, structure and process indicators towards optimal control of patients’ clinically significant symptoms over time. DesignSecondary analysis of data from a multicentre prospective longitudinal observational study (PRELUdiHO) collected between November 2017 and September 2018. Setting/participantsAdult patients (n = 992) enrolled in 13 Italian residential hospices. MethodsTwo generalized estimating equations logistic models were built, both with number of hospice beds and length of stay as independent variables as well as, in one case, patient-to-healthcare worker ratios, and, in the other, health professionals’ qualification levels. Dependent variables were six not clinically significant (score<4) symptoms: pain, nausea, shortness of breath, feeling sad, feeling nervous, and ‘how you feel overall’, according to the Edmonton Symptom Assessment System revised (ESAS-r) scale. ResultsThe generalized estimating equations indicators on staff revealed the following ‘optimal’ model: Patient-to-Physician ratio (5.5:1–6.5:1); Patient-to-Nurse ratio (1.5:1–2.7:1); Patient-to-Nurse-Assistant ratio (4.1:1–6.3:1); with the most balanced staff composition including 19% physicians, 23% nurse assistants, and 58% registered nurses; hospice beds (12–25); length of stay (median = 12 days). This model predicted an up to four times greater likelihood of controlling all six ESAS-r symptoms over time. The generalized estimating equations model on the educational level of physicians and registered nurses showed that it was significantly associated with optimal patients’ symptom control during the entire hospice stay. ConclusionsThis study showed the exact skill-mix composition and proportions of palliative care team able to ensure optimal control of patients’ symptoms. The added value of physicians and nurses with a qualification in palliative care in terms of better patient outcomes reaffirmed the importance of education in guaranteeing quality care. Hospices with 12–25 beds, and recruitment methods guaranteeing at least 12-day stay ensured the most propitious organizational environment for optimal management of clinically significant symptoms. The transferability of these results mainly depends on whether the skills of health professionals in our `ideal' model are present in other contexts.Our results provide policymakers and hospice managers with specific, evidence-based information to support decision-making processes regarding hospice staffing and organization. Further prospective studies are needed to confirm the positive impact of this ‘optimal’ organizational framework on patient outcomes.