Predictors of electronic patient-reported outcomes use in the survivorship setting.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e14038-e14038
Author(s):  
Bridgette Thom ◽  
Stacie Corcoran ◽  
Jessica A. Lavery ◽  
Leon Sarpong ◽  
Alexandria Woodside ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Symptom Burden ◽  
First Year ◽  
Patient Portal ◽  
Cohen’S Kappa ◽  
Cohen's Kappa ◽  
Patient Reported ◽  
One Year ◽  
Future Work ◽  
At Home

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.

scholarly journals Symptom Burden in Transplant Ineligible Patients with Newly Diagnosed Multiple Myeloma: A Population-Based Study of Patient-Reported Outcomes

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 30-31
Author(s):  
Hira S Mian ◽  
Gregory R Pond ◽  
Branavan Sivapathasundaram ◽  
Tanya M. Wildes ◽  
Jonathan Sussman ◽  
...  
Keyword(s):  
Multiple Myeloma ◽  
Patient Reported Outcomes ◽  
Symptom Burden ◽  
Well Being ◽  
Population Based ◽  
First Year ◽  
Newly Diagnosed ◽  
Population Based Study ◽  
Patient Reported ◽  
One Year

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.

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 ◽  
...  
Keyword(s):  
Risk Factors ◽  
Supportive Care ◽  
Patient Reported Outcomes ◽  
Severe Symptom ◽  
Symptom Burden ◽  
Cancer Site ◽  
First Year ◽  
Patients With Cancer ◽  
Patient Reported ◽  
Symptom Scores

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.

scholarly journals Acceptability of no-test medical abortion provided via telemedicine: analysis of patient-reported outcomes

2021 ◽  
pp. bmjsrh-2020-200954
Author(s):  
Chelsey Porter Erlank ◽  
Jonathan Lord ◽  
Kathryn Church
Keyword(s):  
Patient Reported Outcomes ◽  
Medical Abortion ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Post Procedure ◽  
High Satisfaction ◽  
First Choice ◽  
Patient Reported ◽  
At Home

IntroductionThe English government approved both stages of early medical abortion (EMA), using mifepristone and misoprostol under 10 weeks’ gestation, for at-home use on 30 March 2020. MSI Reproductive Choices UK (MSUK), one of the largest providers of abortion services in England, launched a no-test telemedicine EMA pathway on 6 April 2020. The objectives of this study were to report key patient-reported outcome measures and to assess whether our sample was representative of the whole population receiving no-test telemedicine EMA.MethodsA sample of all MSUK’s telemedicine EMA patients between April and August 2020 were invited to opt in to a follow-up call to answer clinical and satisfaction questions. A total of 1243 (13.7% of all telemedicine EMAs) were successfully followed-up, on average within 5 days post-procedure.ResultsPatients reported high confidence in telemedicine EMA and high satisfaction with the convenience, privacy and ease of managing their abortion at home. The sample responding were broadly equivalent to the whole population receiving telemedicine. No patient reported that they were unable to consult privately. The majority (1035, 83%) of patients reported preferring the telemedicine pathway, with 824 (66%) indicating that they would choose telemedicine again if COVID-19 were no longer an issue.ConclusionsTelemedicine EMA is a valued, private, convenient and more accessible option that is highly acceptable for patients seeking an abortion, especially those for whom in-clinic visits are logistically or emotionally challenging. Evidence that this pathway would be a first choice again in future for most patients supports the case to make telemedicine EMA permanent.

scholarly journals P1.10-005 Generation of Symptom Burden Patient-Reported Outcomes for Patients with Lung Cancer

2017 ◽  
Vol 12 (11) ◽  
pp. S2024
Author(s):  
L. Williams ◽  
C. Cleeland ◽  
O. Bamidele ◽  
G. Simon
Keyword(s):  
Lung Cancer ◽  
Patient Reported Outcomes ◽  
Symptom Burden ◽  
Patient Reported

Patient reported outcomes in patients with desmoid type fibromatosis.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 11574-11574
Author(s):  
VIKAS GARG ◽  
Sameer Rastogi ◽  
Adarsh Barwad ◽  
Rambha Panday ◽  
Sandeep Kumar Bhoriwal ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Symptom Burden ◽  
Benign Neoplasm ◽  
Anxiety And Depression ◽  
Appendicular Skeleton ◽  
Healthy Controls ◽  
Symptom Scale ◽  
Cross Sectional ◽  
Patient Reported ◽  
The Impact

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]

scholarly journals The reality of assessing ‘authentic’ electronic portfolios: Can electronic portfolios serve as a form of standardized assessment to measure literacy and self-regulated learning at the elementary level? / L’évaluation d’e-portfolio «authentiques»

2013 ◽  
Vol 39 (4) ◽  
Author(s):  
Eva Mary Bures ◽  
Alexandra Barclay ◽  
Philip C Abrami ◽  
Elizabeth J Meyer
Keyword(s):  
Learning Strategies ◽  
Electronic Portfolios ◽  
Assessment Tools ◽  
First Year ◽  
Cohen’S Kappa ◽  
Self Regulated Learning ◽  
Cohen's Kappa ◽  
Regulated Learning ◽  
The Government ◽  
Literacy Scores

This study explores electronic portfolios and their potential to assess student literacy and self-regulated learning in elementary-aged children. Assessment tools were developed and include a holistic rubric that assigns a mark from 1 to 5 to self-regulated learning (SRL) and a mark to literacy, and an analytical rubric measuring multiple sub-scales of SRL and literacy. Participants in grades 4, 5 and 6 across two years created electronic portfolios, with n=369 volunteers. Some classes were excluded from statistical analyses in the first year due to low implementation and some individuals were excluded in both years, leaving n=251 included in analyses. All portfolios were coded by two coders, and the inter-rater reliability explored. During the first year Cohen’s kappa ranged from 0.70 to 0.79 for literacy and SRL overall, but some sub-scales were unacceptably weak. The second year showed improvement in Cohen’s kappa overall and especially for the sub-scales, reflecting improved implementation of the portfolios and use of the assessment tools. Validity was explored by comparing the relationship of portfolio scores to other measures, including the government scores on the open-response literacy questions for the Canadian Achievement Tests (version 4), the scores we assigned to the CAT-4s using our assessment tools, and scores on the Student Learning Strategies Questionnaire (SLSQ) measuring SRL. The portfolio literacy scores correlated (p

Impact of a tiered discharge opioid algorithm on prescriptions and patient-reported outcomes after open gynecologic surgery

2021 ◽  
pp. ijgc-2021-002674
Author(s):  
Sarah Huepenbecker ◽  
Robert Tyler Hillman ◽  
Maria D Iniesta ◽  
Tsun Chen ◽  
Katherine Cain ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Enhanced Recovery ◽  
Symptom Burden ◽  
Equivalent Dose ◽  
Hospital Length Of Stay ◽  
Gynecologic Surgery ◽  
Post Discharge ◽  
Opioid Prescribing ◽  
Patient Reported ◽  
Morphine Equivalent

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.

scholarly journals What are the Risk Factors for Worse Outcomes of Meniscus Surgery in 23-39-Year-Old Patients Ligamentously Stable Knees?

2020 ◽  
Vol 8 (7_suppl6) ◽  
pp. 2325967120S0046
Author(s):  
◽  
Megan Flynn ◽  
Anthony Egger ◽  
Yuxuan Jin ◽  
Elizabeth Sosic ◽  
...  
Keyword(s):  
Risk Factors ◽  
Young Adult ◽  
Patient Reported Outcomes ◽  
Meniscal Repair ◽  
Patient Specific ◽  
Lower Baseline ◽  
Patient Reported ◽  
Grade 3 ◽  
One Year

Objectives: Meniscus tears are a common and significant source of knee dysfunction in active young adult patients, and no high-quality prospective cohort or RCTs studies exist evaluating patient-reported outcomes in patients in this age group with ligamentously stable knees. Our objective was to identify patient-reported outcomes and patient-specific risk factors from a prospective cohort with a minimum of one-year follow-up following meniscal repair or excision in patients with ligamentously stable knees. We hypothesized that both groups would have significant improvement in outcomes; patients undergoing meniscal repair would have a higher reoperation rate; and articular cartilage injuries, subsequent knee surgery, and certain demographic characteristics would be significant risk factors to inferior outcomes at one year. Methods: Between February 2015 and December 2017, ligamentously stable meniscal procedures were enrolled and prospectively followed using the outcomes management evaluation system (OME) at Cleveland Clinic. Patients aged 23-39 preoperatively completed a series of validated outcome measurements including the Knee Injury and Osteoarthritis Outcome Score for both Pain (KOOS Pain) and Quality of Life (KOOS QoL). At the time of surgery, physicians documented all intra-articular findings, treatment, and surgical techniques utilized. Patients were followed at minimum of 1-year postoperatively through the OME platform and asked to complete the same outcome instruments done at baseline as well as a question designed to evaluate the Patient Acceptable Symptom State (PASS). The incidence and details of any subsequent knee surgeries were also obtained. Multivariable regression analysis was used to identify significant predictors of outcomes. Results: A total of 371 patients aged 23-39 underwent meniscus excision or repair during the study period. One hundred ninety-four met inclusion criteria, and one-year follow-up was obtained on 72% (n = 139) of the cohort (67% male; median age 32). Both KOOS Pain and KOOS QoL improved significantly at one-year for the entire cohort. Fourteen percent of the cohort (9% on the ipsilateral knee, 5% on the contralateral knee) underwent subsequent surgery at a minimum of one-year postoperatively. The patient-specific risk factors for worse one-year outcomes included preoperative baseline mental capacity score (VR-12 MCS), lower baseline KOOS QoL score, and the intraoperative finding of any grade 3 or 4 chondral changes. Conclusion: Young adult patients with ligamentously stable knees undergoing meniscal surgery have significantly improved patient-reported outcomes regardless of excision or repair; however, 14% of patients underwent additional knee surgery at a minimum of one-year postoperatively. The risk factors for worse outcomes include lower baseline mental health score, lower baseline KOOS QoL score, and any grade 3 or 4 chondromalacia scene.

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