Symptom Burden in the First Year After Cancer Diagnosis: An Analysis of Patient-Reported Outcomes

2018 ◽  
Vol 36 (11) ◽  
pp. 1103-1111 ◽  
Author(s):  
Lev D. Bubis ◽  
Laura Davis ◽  
Alyson Mahar ◽  
Lisa Barbera ◽  
Qing Li ◽  
...  

Purpose Improvement in the quality of life of patients with cancer requires attention to symptom burden across the continuum of care, with the use of patient-reported outcomes key to achieving optimal care. Yet there have been few studies that have examined symptoms in the early postdiagnosis period during which suboptimal symptom control may be common. A comprehensive analysis of temporal trends and risk factors for symptom burden in newly diagnosed patients with cancer is essential to guide supportive care strategies. Methods A retrospective observational study was performed of patients who were diagnosed with cancer between January 2007 and December 2014 and who survived at least 1 year. Patient-reported Edmonton Symptom Assessment System scores, which are prospectively collected at outpatient visits, were linked to provincial administrative health care data. We described the proportion of patients who reported moderate-to-severe symptom scores by month during the first year after diagnosis according to disease site. Multivariable logistic regression models were constructed to identify risk factors for moderate-to-severe symptom scores. Results Of 120,745 patients, 729,861 symptom assessments were recorded within 12 months of diagnosis. For most symptoms, odds of elevated scores were highest in the first month, whereas nausea had increased odds of elevated scores up to 6 months after diagnosis. On multivariable analysis, cancer site, younger age, higher comorbidity, female sex, lower income, and urban residence were associated with significantly higher odds of elevated symptom burden. Conclusion A high prevalence of moderate-to-severe symptom scores was observed in cancers of all sites. Patients are at risk of experiencing multiple symptoms in the immediate postdiagnosis period, which underscores the need to address supportive care requirements early in the cancer journey. Patient subgroups who are at higher risk of experiencing moderate-to-severe symptoms should be targeted for tailored supportive care interventions.

2017 ◽  
Vol 13 (4) ◽  
pp. e395-e400 ◽  
Author(s):  
Emily Mackler ◽  
Laura Petersen ◽  
Jane Severson ◽  
Douglas W. Blayney ◽  
Lydia L. Benitez ◽  
...  

Introduction: The paradigm shift in health care toward value-based reimbursement has brought emphasis to providing better quality of care to patients with chronic diseases, including patients with cancer. In accordance with providing better quality of care to patients, there has been a growing interest in evaluating quality of life through patient-reported outcomes (PROs). The revised Edmonton Symptom Assessment Scale (ESAS-r) is a tool that can be used to assess PROs and has been validated for use in patients with cancer. This initiative sought to use this standard assessment tool to acquire PROs concerning symptom burden from patients prescribed oral oncolytics. Patients and Methods: Eight oncology practices in the state of Michigan used a modified ESAS-r to evaluate symptom burden of patients prescribed oral oncolytics before each outpatient visit. Thirteen symptoms were categorized as mild (0 to 3), moderate (4 to 6), or severe (7 to 10). Results: A total of 1,235 modified ESAS-r surveys were collected and analyzed; 82.5% of symptoms were categorized as mild, 11.9% of symptoms were categorized as moderate, and 5.6% of symptoms were categorized as severe. Conclusion: PROs can be evaluated through the use of a standardized tool, such as the ESAS-r, in oncology patients receiving oral oncolytic therapy. Implementing such a tool in both community and academic practices is feasible and may facilitate improvements in the quality of care.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e14038-e14038
Author(s):  
Bridgette Thom ◽  
Stacie Corcoran ◽  
Jessica A. Lavery ◽  
Leon Sarpong ◽  
Alexandria Woodside ◽  
...  

e14038 Background: Patient-reported outcomes (PRO) offer insight into patient perception of health and symptom burden. Despite a shift toward electronic PRO (ePRO), optimal administration methods are unclear. Our institution recently began ePRO collection in survivorship clinics: patients are invited via email to complete a health survey on our online patient portal prior to annual visits, enabling clinician review of symptoms in advance of the visit. Patients who do not complete an ePRO survey at home are offered an iPad or paper survey at visit check-in. In the first year of ePRO, 87 patients inadvertently submitted multiple responses to the questionnaire, across two modalities. This study aimed to 1) assess determinants of ePRO completion across modalities (portal, iPad, paper); and, 2) among patients who submitted multiple surveys, compare consistency of responses in surveys completed within 30 days of each other. Methods: We reviewed records for 10194 patients seen in breast, thoracic, colorectal, and gynecologic survivorship clinics over one year. Demographics, disease/treatment details, and PRO responses (symptoms, health behaviors, etc.) were extracted. For aim 1, we used multivariate regression to determine predictors of completion method. For aim 2, we calculated Cohen’s kappa coefficients to compare responses based on completion modality. Results: Most patients (65.6%) completed the survey on an iPad in clinic; 16.7% on the portal, 17.7% on paper in clinic. Younger age (p < .001), white race (p < .001), less fatigue (p = .01), and English as primary language (p < .001) were associated with portal use in multivariate analyses. In general, Cohen’s Kappa analyses revealed high agreement between surveys. Conclusions: Our findings highlight demographic gaps in ePRO acceptance. Although most patients completed an ePRO (portal or iPad), few completed it at home in advance of their visit, which has implications for clinic flow and clinician preparation for visits. However, our finding of consistent symptom reporting across mode and location of completion is reassuring. Future work should seek to improve comfort with ePRO completion at home among groups less likely to accept it and explore the implications of symptom burden on ePRO acceptance.


Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 30-31
Author(s):  
Hira S Mian ◽  
Gregory R Pond ◽  
Branavan Sivapathasundaram ◽  
Tanya M. Wildes ◽  
Jonathan Sussman ◽  
...  

Introduction Multiple myeloma (MM) is an incurable malignant plasma cell disease with a median age at diagnosis of 70 years, making it a disease of older patients. Although there has been much progress made in the therapeutics of MM, there is a paucity of data with regards to the symptoms experienced by these patients. Patient reported outcomes (PROS) represent an opportunity to both understand the magnitude as well as the temporal trend of this symptom burden. In 2007, routine prospective collection of patient-reported Edmonton Symptoms Assessment System (ESAS) scores during all outpatient cancer clinic visits was initiated in Ontario, Canada. The ESAS is a validated and reliable tool that assesses the severity of nine common symptoms: well-being, pain, tiredness, anxiety, depression, drowsiness, lack of appetite, nausea and shortness of breath. The study of longitudinal data from an administrative data base provides a unique opportunity to understand the symptom burden experienced by MM patients in the 'real-world' at a population level. Methods We conducted a retrospective population-based study using administrative data from the Institute of Clinical Evaluative Sciences (ICES), which maintains a central database of health records for all patients in the publicly funded health care system for the province of Ontario, Canada. All patients with newly diagnosed multiple identified using the ICD-O-3 code 9732 (Multiple Myeloma), who received treatment, but no transplant in the first year, between the years Jan 2007-Dec 2018, were identified. The main outcome of interest was an ESAS score of ≥4 which has been shown to represent clinically significant moderate to severe symptom burden, within the first 12 months following MM diagnosis. Logistic regression was used to assess the association between baseline factors identified a priori and moderate to severe symptoms for each domain. Results A total of 4611 transplant ineligible patients with newly diagnosed myeloma were identified between the years 2007-2018. Of these, 2876 (62.3%) with at least one ESAS score following diagnosis were included in this analysis. This represented 27,701 unique ESAS assessments recorded during the first year, which were used to form the cohort. Baseline characteristics for transplant ineligible patients with one or more ESAS are shown in Table I. Trajectory for moderate to severe symptoms in each month following diagnosis is shown in Figure 1. A high proportion of the cohort reported moderate to severe symptoms at diagnosis, with tiredness (64%) and impaired well-being (60%) being among the most prevalent and nausea being the least prevalent (13%). Most symptoms decreased over the first year, with the largest decline happening in the first 3 months. One year following diagnosis, there continued to be a substantial burden of symptoms, with over 25% of the cohort reporting at least one or more of the following moderate-severe symptoms: tiredness, pain, impaired well-being, drowsiness or loss of appetite. Self-reported depression rates marginally decreased over time; however, at the end of one year, 18% of cohort still reported moderate to severe depression. On multivariable analysis, younger age, female sex, urban geographic location, poor socioeconomic status, an earlier diagnosis year, myeloma defining end-organ damage and non-teaching hospital were associated with a higher odds of reporting moderate to severe symptoms. Conclusion Our results demonstrate that there is considerable symptom burden during the first year following MM diagnosis, with tiredness, impaired well-being and pain being the most common. Although symptoms improve over time, a significant proportion of patients continue to experience moderate to severe symptoms one-year post diagnosis. This study represents the largest population-based cohort study done to date in symptom burden among patients with MM. Future studies aimed at targeted intervention are needed early in the disease course in order to alleviate symptoms burden for at-risk patient groups. Disclosures Mian: Takeda: Consultancy, Honoraria; Celgene: Consultancy; Janssen: Consultancy, Honoraria; Amgen: Consultancy, Honoraria; Sanofi: Consultancy. Pond:Roche Canada: Other; Astra Zeneca: Consultancy; Takeda: Honoraria. Wildes:Janssen: Research Funding; Seattle Genetics: Consultancy; Carevive Systems: Consultancy.


BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Nanako Koyama ◽  
Chikako Matsumura ◽  
Yoshihiro Shitashimizu ◽  
Morito Sako ◽  
Hideo Kurosawa ◽  
...  

Abstract Background The clinical use of patient-reported outcomes as compared to inflammatory biomarkers for predicting cancer survival remains a challenge in palliative care settings. We evaluated the role of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative scores (EORTC QLQ-C15-PAL) and the inflammatory biomarkers C-reactive protein (CRP), albumin (Alb), and neutrophil-lymphocyte ratio (NLR) for survival prediction in patients with advanced cancer. Methods This was an observational study in terminally ill patients with cancer hospitalized in a palliative care unit between June 2018 and December 2019. Patients’ data collected at the time of hospitalization were analyzed. Cox regression was performed to examine significant factors influencing survival. A receiver operating characteristic (ROC) analysis was performed to estimate cut-off values for predicting survival within 3 weeks, and a log-rank test was performed to compare survival curves between groups divided by the cut-off values. Results Totally, 130 patients participated in the study. Cox regression suggested that the QLQ-C15-PAL dyspnea and fatigue scores and levels of CRP, Alb, and NLR were significantly associated with survival time, and cut-off values were 66.67, 66.67, 3.0 mg/dL, 2.5 g/dL, and 8.2, respectively. The areas under ROC curves of these variables were 0.6–0.7. There were statistically significant differences in the survival curves between groups categorized using each of these cut-off values (p < .05 for all cases). Conclusion Our findings suggest that the assessment of not only objective indicators for the systemic inflammatory response but also patient-reported outcomes using EORTC QLQ-C15-PAL is beneficial for the prediction of short-term survival in terminally ill patients with cancer.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kwangwoo Nam ◽  
Sang Hyoung Park ◽  
Jun Ho Oh ◽  
Ho-Su Lee ◽  
Soomin Noh ◽  
...  

Abstract Background Many patients with ulcerative colitis (UC) in clinical remission frequently complain of bowel symptoms such as increased stool frequency (SF) and rectal bleeding (RB). However, studies on these patient-reported outcomes in patients with inactive UC are limited, especially in Korea. Therefore, we investigated the prevalence and risk factors of bowel symptoms in Korean patients with inactive UC. Methods We investigated the prevalence of bowel symptoms in patients with endoscopically quiescent UC between June 1989 and December 2016 using a well-characterized referral center-based cohort. The Mayo clinic score (MCS) was used to evaluate bowel symptoms at the most recent visit near the date of endoscopy. Clinical characteristics of the patients were compared based on the presence or absence of bowel symptoms. Results Overall, 741 patients with endoscopically quiescent UC were identified, of whom 222 (30%) and 48 (6.5%) had an SF and RB subscore of ≥ 1, respectively. Patients with bowel symptoms (SF + RB ≥ 1; n = 244 [32.9%]) had higher rates of left-sided colitis (E2) or extensive colitis (E3) than patients without bowel symptoms (SF + RB = 0; n = 497 [67.1%]; P = 0.002). Multivariate analysis revealed that female sex (odds ratio [OR]: 1.568; 95% confidence interval [CI]: 1.023–2.402; P = 0.039) and E2 or E3 (OR 1.411; 95% CI 1.020–1.951; P = 0.038) were the significant risk factors for increased SF. Conclusions This study revealed that one-third of patients with endoscopically quiescent UC reported increased SF. Female sex and disease extent may be associated with bowel symptoms.


2017 ◽  
Vol 12 (11) ◽  
pp. S2024
Author(s):  
L. Williams ◽  
C. Cleeland ◽  
O. Bamidele ◽  
G. Simon

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 11574-11574
Author(s):  
VIKAS GARG ◽  
Sameer Rastogi ◽  
Adarsh Barwad ◽  
Rambha Panday ◽  
Sandeep Kumar Bhoriwal ◽  
...  

11574 Background: Desmoid type fibromatosis (DTF) is a rare benign neoplasm with infiltrative growth and high local recurrences. Due to long disease course, unpredictable growth pattern, and low mortality, using only survival outcomes may be inappropriate. In this study we assessed the impact of DTF on health related quality of life (HRQoL). Methods: This was a cross-sectional study done in patients with DTF. The study participants were asked to fill the EORTC QLQ-C30, GAD-7 and PHQ- 9 q uestionnaires to assess HRQoL, anxiety and depression . Outcomes were also compared with healthy controls. Results: 204 subjects (102 DTF patients and 102 healthy controls) were recruited. Study parameters have been summarized in Table. Appendicular skeleton (limbs + girdle) was most commonly involved in 59 % patients and abdominal wall or mesentery was involved in 22.5 %. Patients have received median of 2 lines of therapy. 54 % patients were currently on sorafenib and 41 % were under active surveillance. Mean global health status in DTF patient 65.58 ± 22.64, was significantly lower than healthy controls. Similarly, DTF patients scored low on all functional scales except cognitive functioning. Symptom scale showed significantly higher symptom burden of fatigue, pain, insomnia and financial difficulties. Anxiety & depression was observed in 39.22 % and 50 % of DTF patients respectively. DTF patients had higher rates of mild, moderate and severe anxiety and depression compared to healthy controls. No difference was observed based on site of disease. Conclusions: DTF patients have significant symptom burden, poor functioning, and heightened anxiety and depression. Patient reported outcomes should be routinely used to assess treatment efficacy in DTF patients.[Table: see text]


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

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


10.2196/19685 ◽  
2020 ◽  
Vol 22 (10) ◽  
pp. e19685
Author(s):  
Afaf Girgis ◽  
Ivana Durcinoska ◽  
Anthony Arnold ◽  
Joseph Descallar ◽  
Nasreen Kaadan ◽  
...  

Background Despite the acceptability and efficacy of e–patient-reported outcome (ePRO) systems, implementation in routine clinical care remains challenging. Objective This pragmatic trial implemented the PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care) web-based system into existing clinical workflows and evaluated its effectiveness among a diverse population of patients with cancer. Methods Adult patients with solid tumors receiving active treatment or follow-up care in four cancer centers were enrolled. The PROMPT-Care intervention supported patient management through (1) monthly off-site electronic PRO physical symptom and psychosocial well-being assessments, (2) automated electronic clinical alerts notifying the care team of unresolved clinical issues following two consecutive assessments, and (3) tailored online patient self-management resources. Propensity score matching was used to match controls with intervention patients in a 4:1 ratio for patient age, sex, and treatment status. The primary outcome was a reduction in emergency department presentations. Secondary outcomes were time spent on chemotherapy and the number of allied health service referrals. Results From April 2016 to October 2018, 328 patients from four public hospitals received the intervention. Matched controls (n=1312) comprised the general population of patients with cancer, seen at the participating hospitals during the study period. Emergency department visits were significantly reduced by 33% (P=.02) among patients receiving the intervention compared with patients in the matched controls. No significant associations were found in allied health referrals or time to end of chemotherapy. At baseline, the most common patient reported outcomes (above-threshold) were fatigue (39%), tiredness (38.4%), worry (32.9%), general wellbeing (32.9%), and sleep (24.1%), aligning with the most frequently accessed self-management domain pages of physical well-being (36%) and emotional well-being (23%). The majority of clinical feedback reports were reviewed by nursing staff (729/893, 82%), largely in response to the automated clinical alerts (n=877). Conclusions Algorithm-supported web-based systems utilizing patient reported outcomes in clinical practice reduced emergency department presentations among a diverse population of patients with cancer. This study also highlighted the importance of (1) automated triggers for reviewing above-threshold results in patient reports, rather than passive manual review of patient records; (2) the instrumental role nurses play in managing alerts; and (3) providing patients with resources to support guided self-management, where appropriate. Together, these factors will inform the integration of web-based PRO systems into future models of routine cancer care. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12616000615482; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370633 International Registered Report Identifier (IRRID) RR2-10.1186/s12885-018-4729-3


2021 ◽  
pp. ijgc-2021-002674
Author(s):  
Sarah Huepenbecker ◽  
Robert Tyler Hillman ◽  
Maria D Iniesta ◽  
Tsun Chen ◽  
Katherine Cain ◽  
...  

ObjectiveTo compare discharge opioid refills, prescribed morphine equivalent dose and quantity, and longitudinal patient-reported outcomes before and after implementation of a tiered opioid prescribing algorithm among women undergoing open gynecologic surgery within an enhanced recovery after surgery program.MethodsWe compared opioid prescriptions, clinical outcomes, and patient-reported outcomes among 273 women. Post-discharge symptom burden was collected up to 42 days after discharge using the validated 27-item MD Anderson Symptom Inventory and analyzed using linear mixed effects models and Kaplan–Meier curves for symptom recovery.ResultsAmong 113 pre-implementation and 160 post-implementation patients there was no difference in opioid refills (9.7% vs 11.3%, p=0.84). The post-implementation cohort had a significant reduction in median morphine equivalent dose (112.5 mg vs 225 mg, p<0.01), with no difference in median hospital length of stay (3 days vs 3 days, p=1.0) or 30-day readmission rate (9.4% vs 7.1%, p=0.66). There was no difference in patient-reported pain between the pre- and post-implementation cohorts on the day of discharge (severity 4.93 vs 5.14, p=0.53) or in any patient-reported symptoms, interference measures, or composite scores by post-discharge day 7. The median recovery time for most symptoms was 7 days, except for pain (14 days), fatigue (18 days), and physical interference (21 days), with no differences between cohorts.ConclusionsAfter implementation of a tiered opioid prescribing algorithm, the quantity and dose of discharge opioids prescribed decreased with no change in post-operative refills and without negatively impacting patient-reported symptom burden or interference, which can be used to educate and reassure patients and providers.


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