Patient and physician preferences for NIH PROMIS patient-reported outcome (PRO) domains in pancreatic ductal adenocarcinoma (PDA).

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e15721-e15721
Author(s):  
Michelle Guan ◽  
Gillian Gresham ◽  
Arvind Manohar Shinde ◽  
Veronica Placencio-Hickok ◽  
Jun Gong ◽  
...  
Keyword(s):  
Symptom Management ◽  
Symptom Burden ◽  
Patient Reported Outcome ◽  
Health Priorities ◽  
Ductal Adenocarcinoma ◽  
Pain Anxiety ◽  
Resection Status ◽  
Patient Reported ◽  
Health Domains ◽  
Patient Values

e15721 Background: PDA is associated with high symptom burden. However, treatment and palliation decisions currently weigh on physician interpretation of clinical parameters and may not consider patient values and preferences. The NIH PROMIS tool was created to capture various health domains through PROs. The objective of this study was to identify the most important PROMIS domains to PDA pts and physician providers. Methods: Using the 31 domains in NIH’s PROMIS, we conducted online surveys with PDA pts and PDA physicians from 17 academic centers. These domains are categorized into mental, physical, and social health. Values for the PRO domains were quantified using Maximum Differences Scaling (Sawtooth Software). Results: A total of 116 PDA pts (55% males, 45% females; median age: 68 years, range 42-95) and 33 physicians (78% males, 22% females; median years of experience: 15) completed the surveys. The top five domains identified by pts and providers are listed in the table. Physical functioning (PF), ability to perform activities of daily living (ADLs) and symptom management were among the top domains for both pts and physicians regardless of age, gender, resection status, or years of physician experience. However, social domains such as ability to do things for yourself, family, and friends, and interactions with family/friends were ranked significantly higher by pts versus pain, anxiety, and depression by physicians (p < 0.01). Conclusions: Our findings suggest PDA pts value PF and engaging in work and social activities while physicians focus more on pain, depression, and symptom management. PROs need to become more important endpoints in clinical trials to better inform treatment decisions and develop therapies that address the health priorities of pts. [Table: see text]

scholarly journals Longitudinal study of symptom burden in outpatients with advanced cancers based on electronic Patient-Reported Outcome (ePRO) platform: a single institution, prospective study protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e038223
Author(s):  
Lili Tang ◽  
Ying Pang ◽  
Yi He ◽  
Qiuling Shi ◽  
Xinkun Han ◽  
...  
Keyword(s):  
Study Protocol ◽  
Symptom Management ◽  
Depression Scale ◽  
Symptom Burden ◽  
Patient Reported Outcome ◽  
Critical Parameters ◽  
Advanced Lung Cancer ◽  
Optimal Time ◽  
Patient Reported

IntroductionAn electronic Patient-Reported Outcome (ePRO) platform is needed for implementing evidence-based symptom management in outpatients with advanced cancer. We describe the overall protocol and the methodology for measuring symptom burden, to provide critical parameters needed to implement symptom management on the ePRO platform.Methods and analysisThe study focusses on patients with advanced lung cancer, stomach cancer, oesophagus cancer, liver cancer, colorectal cancer or breast cancer. The primary outcome is the change of symptom burden. MD Anderson Symptom Inventory, and other PRO instruments (Insomnia Severity Index, Hospital Anxiety and Depression Scale, 9-item Patient Health Questionnaire and EuroQol-5 dimensions-5 levels version) were used. The secondary outcomes include feasibility of using ePRO, symptom-related quality of life, reasons for no improvement of symptoms, defining frequency of PRO assessments and cut-points, items for screening and management of comorbidity and satisfaction with ePRO platform in patients and health providers. After initial outpatient visit for baseline assessment, ePRO system will automatically send follow-up notification seven times over 4 weeks to patients. The characteristics and changing trajectory of symptoms of patients will be described. Parameters for using PROs, such as optimal time points for follow-up and cut-off point for alert will be determined. The feasibility of ePRO platform to track the changes of target symptoms in outpatients will be evaluated.Ethics and disseminationThe study protocol and related documents were approved by the Institutional Research Board (IRB) of Peking University Cancer Hospital on 13 February 2019 (2019YJZ07). The results of this study will be disseminated through academic workshops, peer-reviewed publications and conferences.Trial registration numberChiCTR1900023560.

scholarly journals QOLP-28. THE USE OF VIRTUAL REALITY FOR SYMPTOM MANAGEMENT: APPLICATION IN NEURO-ONCOLOGY

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi203-vi204
Author(s):  
Nicole Leggiero ◽  
Terri Armstrong ◽  
Elizabeth Vera ◽  
Mark Gilbert ◽  
Amanda King
Keyword(s):  
Virtual Reality ◽  
Symptom Management ◽  
Strong Support ◽  
Symptom Burden ◽  
High Grade Glioma ◽  
Tumor Patients ◽  
Cns Tumor ◽  
Pain Anxiety ◽  
Common Diagnosis ◽  
Patient Reported

Abstract Patients with primary central nervous system (CNS) tumors are highly symptomatic due to the functional sequelae of their disease and an unfavorable prognosis. Virtual reality (VR) immersive technology has demonstrated benefit in improving patients’ symptom burden, such as distress, pain, anxiety, and fatigue. However, this has not been explored in a CNS tumor population. This project explored the potential use of VR for symptom management in CNS tumor patients. A descriptive analysis of MDASI-BT/MDASI-SP/PROMIS-Anxiety patient-reported outcomes (PROs) for 535 CNS tumor patients was performed to identify the common moderate-severe (> 4 on a 0–10 scale) symptoms. Additionally, a systematic review of literature was performed addressing the question “For adult patients with solid tumors, what effect does VR have on their self-reported symptoms, such as distress, anxiety and pain?” The systematic literature review resulted in 17 studies using VR in other solid tumor populations, which demonstrated improvement in pain, anxiety, and distress. However, study designs often lacked rigor and none incorporated any biomarkers to correlate with PROs. CNS tumor symptom review of our patient cohort revealed that the majority of the patients were Caucasian (83%) males (58%) with a median age of 50 years (range, 18–83). At the time of diagnosis, 35% had a gross total resection. Glioblastoma was the most common diagnosis (32%) and 50% had a high-grade glioma. The most prevalent moderate-severe symptoms in this sample was fatigue (34%), with (14%) anxiety, (18%) pain, and (19%) distress. Given the high symptom rate in our patients, the promising but limited data that VR technology could improve distress and other symptoms provides strong support for this intervention in the CNS tumor population. Further research is needed to assess feasibility and efficacy of VR, as well as incorporation of correlative biomarkers, to better determine potential improvement in patient symptom burden.

Development and testing of patient-reported outcome performance measures (PRO-PMs) for oncology practice.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 173-173
Author(s):  
Angela M. Stover ◽  
Ben Urick ◽  
Allison Mary Deal ◽  
Jennifer Jansen ◽  
Sydney Henson ◽  
...  
Keyword(s):  
Performance Measures ◽  
Risk Adjustment ◽  
Symptom Management ◽  
Symptom Burden ◽  
Patient Reported Outcome ◽  
Cancer Type ◽  
National Quality ◽  
Patient Reported ◽  
Oncology Practice ◽  
Outcome Performance

173 Background: Symptom management is a cornerstone of quality oncology practice. ASCO established a Working Group to develop patient-reported outcome performance measures (PRO-PMs) for assessing symptom management. We describe multi-center testing funded by PCORI. Methods: Multi-stakeholder consensus and literature review identified 11 symptoms for testing as potential PRO-PMs. For these symptoms, questions from the NCI’s PRO-CTCAE tool were administered at 6 US academic and community oncology practices. Patients across cancer types completed questions electronically on days 5-15 of chemotherapy cycles. PRO-CTCAE mapped scores were dichotomized to delineate clinically meaningful thresholds (0-1 vs ≥2), and rates were tabulated between practices. Symptoms were selected to become PRO-PMs if clinically actionable and with prevalence ≥20%; between-practice variation was evaluated using χ2. Twelve candidate sociodemographic and clinical risk adjustment (RA) variables were evaluated via Akaike information criterion testing. Risk-adjusted PRO-PM rates were calculated using observed:expected ratios via generalized linear mixed modeling. Results: Among 653 enrolled patients, 607 (93%) completed questionnaires. Four of 11 symptoms met criteria for PRO-PM development: nausea, constipation, insomnia, pain. Four RA variables met inclusion criteria: age, gender, cancer type, insurance type. The Table shows raw and risk-adjusted rates of symptom burden (scores ≥2) for each PRO-PM across practices. Risk-adjustment yielded a modest impact on scores. Conclusions: Oncology PRO-PMs have been developed to quantify the burden of actionable symptoms at the practice level. Collection from patients is feasible. Further refinement is underway prior to submission for endorsement by the National Quality Forum. [Table: see text]

Abstract 165: What Domains of Health Are Most Impacted After Ischemic Stroke?

Stroke ◽  
2017 ◽  
Vol 48 (suppl_1) ◽  
Author(s):  
Irene Katzan ◽  
Ken Uchino ◽  
Nicolas Thompson
Keyword(s):  
Ischemic Stroke ◽  
General Population ◽  
Social Roles ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Health Domains ◽  
Degree Of Disability ◽  
Multiple Domains ◽  
The U.S

Background: Multiple domains of health are impacted in patients with ischemic stroke, which may vary by degree of disability. The objective of this study was to examine patient-reported health for 6 domains across levels of disability compared to the U.S. general population. Methods: Observational cohort study of 811 ischemic stroke patients (937 visits) seen in a cerebrovascular clinic 2/17/15 - 8/8/16 who completed the routinely collected PROMIS patient-reported outcome measures (PROMs): Physical Function (PF), Satisfaction with Social Roles (SatSocRol), Fatigue, Anxiety, Sleep Disturbance, and Pain Interference. PROMIS scores are standardized to the U.S. population (mean score = 50). Providers completed the NIHSS and modified Rankin (mRS). Distribution of PROMIS scores were calculated across mRS levels. Multivariable regression was performed to evaluate the association of the following factors with PROM scores: age, sex, race, mRS, and time from stroke (0-90 d, 91-365 d, >365 d). Results: Patients with no-minimal disability (mRS 0-1) had PROMIS scores that were similar to the general population. PROMIS scores increased at higher mRS levels, although correlation between scores and mRS level varied (Sleep ρ= 0.172 to PF ρ=0.483). Within each mRS level > 1, highest (worst) scores were in PF, SatSocRol, and Cognition domains (Graph). Female sex was associated with higher Fatigue (p=0.003), Anxiety (p<0.0001), PF (p=0.021), and Cognition (p=0.001) scores. Age was associated with higher PF (p<0.0001) and lower Anxiety (p=0.023) scores. Conclusion: Patients with ischemic stroke reported symptoms in multiple health domains that increase to varying degrees at higher levels of disability. PF, SatSocRol, and Cognition were most impacted at all disability levels. This information improves our understanding of stroke’s impact on patients compared to the general population and brings attention to the importance of social roles and cognition to stroke survivors.

scholarly journals Benefits and Disadvantages of Electronic Patient-reported Outcome Measures: Systematic Review

10.2196/15588 ◽  
2020 ◽  
Vol 3 (1) ◽  
pp. e15588 ◽  
Author(s):  
Jill Meirte ◽  
Nick Hellemans ◽  
Mieke Anthonissen ◽  
Lenie Denteneer ◽  
Koen Maertens ◽  
...  
Keyword(s):  
Systematic Review ◽  
Data Quality ◽  
Outcome Measures ◽  
Symptom Management ◽  
Completion Time ◽  
Clinical Decision Making ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Technologies ◽  
Patient Reported

Background Patient-reported outcome measures (PROMs) are important in clinical practice and research. The growth of electronic health technologies provides unprecedented opportunities to systematically collect information via PROMs. Objective The aim of this study was to provide an objective and comprehensive overview of the benefits, barriers, and disadvantages of the digital collection of qualitative electronic patient-reported outcome measures (ePROMs). Methods We performed a systematic review of articles retrieved from PubMED and Web of Science. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed during all stages. The search strategy yielded a total of 2333 records, from which 32 met the predefined inclusion and exclusion criteria. The relevant ePROM-related information was extracted from each study. Results Results were clustered as benefits and disadvantages. Reported benefits of ePROMs were greater patient preference and acceptability, lower costs, similar or faster completion time, higher data quality and response rates, and facilitated symptom management and patient-clinician communication. Tablets were the most used ePROM modality (14/32, 44%), and, as a platform, Web-based systems were used the most (26/32, 81%). Potential disadvantages of ePROMs include privacy protection, a possible large initial financial investment, and exclusion of certain populations or the “digital divide.” Conclusions In conclusion, ePROMs offer many advantages over paper-based collection of patient-reported outcomes. Overall, ePROMs are preferred over paper-based methods, improve data quality, result in similar or faster completion time, decrease costs, and facilitate clinical decision making and symptom management. Disadvantages regarding ePROMs have been outlined, and suggestions are provided to overcome the barriers. We provide a path forward for researchers and clinicians interested in implementing ePROMs. Trial Registration PROSPERO CRD42018094795; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=94795

scholarly journals Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials

2020 ◽  
Vol 5 (2_suppl) ◽  
pp. 48-60
Author(s):  
Lesley Ann Saketkoo ◽  
Mary Beth Scholand ◽  
Matthew R. Lammi ◽  
Anne-Marie Russell
Keyword(s):  
Clinical Practice ◽  
Systemic Sclerosis ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Outcome Measures ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Science Methodology

Systemic sclerosis (SSc) is a progressive vasculopathic, fibrosing autoimmune condition, portending significant mortality; wherein interstitial lung disease (ILD) is the leading cause of death. Although lacking a definitive cure, therapeutics for (SSc-ILD) that stave progression exist with further promising primary and adjuvant compounds in development, as well as interventions to reduce symptom burden and increase quality of life. To date, there has been a significant but varied history related to systemic sclerosis–related interstitial lung disease trial design and endpoint designation. This is especially true of endpoints measuring patient-reported perceptions of efficacy and tolerability. This article describes the underpinnings and complexity of the science, methodology, and current state of patient-reported outcome measures used in (SSc-ILD) systemic sclerosis–related interstitial lung disease in clinical practice and trials.

scholarly journals Implementing a Patient-Reported Outcome Measure for Hemodialysis Patients in Routine Clinical Care

2020 ◽  
Vol 15 (9) ◽  
pp. 1299-1309 ◽  
Author(s):  
Jenna M. Evans ◽  
Alysha Glazer ◽  
Rebecca Lum ◽  
Esti Heale ◽  
Marnie MacKinnon ◽  
...  
Keyword(s):  
Outcome Measure ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Patient Reported Outcome ◽  
Assessment System ◽  
Edmonton Symptom Assessment System ◽  
Patient Reported Outcome Measure ◽  
Symptom Screening ◽  
Patient Reported ◽  
Patient Provider Communication

Background and objectivesThe Edmonton Symptom Assessment System Revised: Renal is a patient-reported outcome measure used to assess physical and psychosocial symptom burden in patients treated with maintenance dialysis. Studies of patient-reported outcome measures suggest the need for deeper understanding of how to optimize their implementation and use. This study examines patient and provider perspectives of the implementation process and the influence of the Edmonton Symptom Assessment System Revised: Renal on symptom management, patient-provider communication, and interdisciplinary communication.Design, setting, participants, & measurements Eight in-facility hemodialysis programs in Ontario, Canada, assessed patients using the Edmonton Symptom Assessment System Revised: Renal every 4–6 weeks for 1 year. Screening and completion rates were tracked, and pre- and postimplementation surveys and midimplementation interviews were conducted with patients and providers. A chart audit was conducted 12 months postimplementation.ResultsIn total, 1459 patients completed the Edmonton Symptom Assessment System Revised: Renal; 58% of eligible patients completed the preimplementation survey (n=718), and 56% of patients who completed the Edmonton Symptom Assessment System Revised: Renal at least once completed the postimplementation survey (n=569). Provider survey response rates were 71% (n=514) and 54% (n=319), respectively. Nine patients/caregivers from three sites and 48 providers from all sites participated in interviews. A total of 1207 charts were audited. Seven of eight sites had mean screening rates over 80%, suggesting that routine use of the Edmonton Symptom Assessment System Revised: Renal in clinical practice is feasible. However, the multiple data sources painted an inconsistent picture of the value and effect of the Edmonton Symptom Assessment System Revised: Renal. The Edmonton Symptom Assessment System Revised: Renal standardized symptom screening processes across providers and sites; improved patient and provider symptom awareness, particularly for psychosocial symptoms; and empowered patients to raise issues with providers. Yet, there was little, if any, statistically significant improvement in the metrics used to assess symptom management, patient-provider communication, and interdisciplinary communication.ConclusionsThe Edmonton Symptom Assessment System Revised: Renal patient-reported outcome measure may be useful to standardize symptom screening, enhance awareness of psychosocial symptoms among patients and providers, and empower patients rather than to reduce symptom burden.

scholarly journals Performance of the Patient-Reported Outcome Measurement Information System in Patients With Patellofemoral Instability

2020 ◽  
Vol 8 (4) ◽  
pp. 232596712091554 ◽  
Author(s):  
Christina J. Hajewski ◽  
Jacqueline E. Baron ◽  
Natalie A. Glass ◽  
Kyle R. Duchman ◽  
Matthew Bollier ◽  
...  
Keyword(s):  
Information System ◽  
Outcome Measurement ◽  
Patellofemoral Instability ◽  
Patient Reported Outcome ◽  
Measurement Information ◽  
Sf 36 ◽  
Patient Reported ◽  
Ceiling Effects ◽  
Health Domains ◽  
Measurement Information System

Background: The Patient-Reported Outcome Measurement Information System (PROMIS) was developed to improve patient-reported outcome measures (PROMs) and administration through a computer adaptive test (CAT). The PROMIS physical function-CAT (PF-CAT) has not been investigated in patients with patellofemoral instability (PFI). Purpose/Hypothesis: The purpose of this study was to evaluate the construct validity of the PROMIS PF-CAT with previously validated tools for measuring PROMs in patients with a diagnosis of PFI. We hypothesized that the PF-CAT will have the strongest correlations with other PROMs that evaluated PF as well as moderate correlations with PROMs that measured other health domains. Study Design: Cohort study (diagnosis); Level of evidence, 2. Methods: Patients enrolled in this study who underwent operative intervention for PFI completed the following evaluations preoperatively: PROMIS PF-CAT, 36-Item Short Form Health Survey (SF-36), Knee injury and Osteoarthritis Outcome Score (KOOS), EuroQol-5 dimensions (EQ-5D), and Kujala Anterior Knee Pain Scale (AKPS). Correlation coefficients and the percentage of patients achieving the highest and lowest possible outcome score of each instrument were calculated to assess floor and ceiling effects. Statistical significance was defined as P < .05. Results: In total, 91 participants (63.7% females; mean age, 20.1 ± 7.2 years) completed the questionnaires. PF-CAT had the lowest number of questions (4.3 ± 1.1). The strongest correlations were between the PF-CAT and SF-36 PF subscale ( r = 0.78; P < .01), AKPS ( r = 0.68; P < .01), and KOOS Activities of Daily Living subscale ( r = 0.68; P < .01). Correlation was moderate between the PF-CAT and the KOOS subscales of Sports/Recreation ( r = 0.58; P < .01), Quality of Life ( r = 0.53; P < .01), and Symptoms ( r = 0.47; P < .01). The PROMIS PF-CAT demonstrated no floor or ceiling effects. Conclusion: In patients with PFI, construct validity of the PROMIS PF-CAT was supported by strong correlations demonstrated between the PF-CAT and PROMs evaluating PF and moderate correlations with those assessing other health domains. Our results demonstrated a low respondent burden and no floor or ceiling effects associated with the PROMIS PF-CAT. The PROMIS PF-CAT may be considered a beneficial alternative to previously established PF PROMs for preoperative evaluation of patients with PFI.

Evaluation of an interactive patient-reported outcome (I-PRO) system in outpatients receiving oral chemotherapy..

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e18208-e18208
Author(s):  
Marika Anna Rasschaert ◽  
Jan Van den Brande ◽  
Konstantinos Papadimitriou ◽  
Pol Specenier ◽  
Sven De Keersmaecker ◽  
...  
Keyword(s):  
Symptom Management ◽  
Treatment Compliance ◽  
Skin Toxicity ◽  
Patient Reported Outcome ◽  
Outpatient Setting ◽  
International Standards ◽  
Standards Of Care ◽  
Time Data ◽  
Central Platform ◽  
Patient Reported

e18208 Background: Health Information Technology (HIT) is increasingly integrated in clinical cancer care. Simultaneous routine assessment of patient reported outcomes (PROs) reliably improve symptom management, patient-provider communication and ultimately survival. Methods: his pilot study is a single center experience with the development and validation of an I-PRO tool (AMOCT). After obtaining informed consent, outpatients, using oral anticancer treatment, recorded their medication intake and 17 PRO measures (PROM) using this I-PRO tool. The device allowed real time data collection via a central platform. The registered data were processed by an algorithm, which stratifies the data into different grades according to international standards of care (CTCAE v4.0). In response to registration of data, patients received either automated symptom management suggestions or were referred to their caregivers. Patient clinical and demographic information is collected from medical records and analyzed using descriptive statistics. Results: 63 Patients were included, 51% male, mean age 61.5 (range 28-83). 41% Of patients used capecitabine, 24% regorafenib, 16% TAS 102, 5% pazopanib and 5% sunitinib. Of the 1873 PROM-scores, 308 scores needed nurses’ attention, ultimately leading to dose reductions in 7 patients (12%). Most often due to weight loss, skin toxicity and asthenia. 41 Patients stopped registration: 51% because treatment ended, 27 % died, 10% dropped out, 5% progressed, 5% were lost to follow up and 2% never started. This tool was well adopted and demonstrated treatment compliance in > 85% patients. Conclusions: This study confirms the feasibility of the program, in an outpatient setting. This I-PRO tool provides a means to register compliance and toxicity of treatment. The compliance to the I-PRO tool will be confirmed, with further development of this program in a multicenter, randomized design. Evaluation of quality of life, PROM’s and further exploration of the relationship between optimal pharmacovigilance and improvement of patient’s outcome will ensue.

Sign in / Sign up

Export Citation Format

Share Document