scholarly journals Consilium Smartphone App for Real-World Electronically Captured Patient-Reported Outcome Monitoring in Cancer Patients Undergoing anti-PD-L1-Directed Treatment

2020 ◽  
Vol 13 (2) ◽  
pp. 491-496 ◽  
Author(s):  
Andreas Trojan ◽  
Urs Huber ◽  
Mathis Brauchbar ◽  
Ulf Petrausch
Keyword(s):  
Patient Reported Outcomes ◽  
Patient Reported Outcome ◽  
Smartphone App ◽  
Safety Issues ◽  
Electronic Reporting ◽  
Outcome Monitoring ◽  
Patient Reported ◽  
Severity Grading ◽  
Insight Into

Digital patient monitoring gains importance for quality of clinical cancer care. Our case report provides insight into usability and acceptance of a smartphone app for monitoring of electronically captured patient-reported outcomes in patients undergoing immunotherapy. During 3 months, 6 patients with advanced or metastatic PD-L1-positive cancer of the lung, prostate, and bladder who underwent checkpoint immunotherapy were using the Consilium app for standardized and structured electronic reporting of symptoms and therapy side effects. We evaluated the number and quality of symptom entries as well as usability and safety of shared reporting between the patient and the treating physician. Duration of anti-PD-L1-directed immunotherapy in the 6 patients ranged from 4 to 10 months and comprised a total of 21 anti-PD-L1-directed immunotherapy cycles. Patients reported between 4 and 16 different symptoms, of which the most frequent (57%) were dry cough, fatigue, shortness of breath, fever, and appetite loss. Overall, 1,279 symptom entries were counted, corresponding to 2.4 symptom entries per patient per day. Symptom severity grading ranged from 0.1 (very slight symptoms) to 7.8 (severe symptoms), which triggered prespecified alerts in 4 of the 6 patients. No unplanned visits were noted, and no safety issues occurred. Satisfaction with the app usability was high, as was the beneficial effect on consultation. Usability and reviewed data entries indicate high shared reporting efforts of patients and treating physicians and overall satisfaction with electronically reported patient outcomes.

scholarly journals Scope and heterogeneity of outcomes reported in randomized trials in patients receiving peritoneal dialysis

2020 ◽  
Author(s):  
Karine E Manera ◽  
David W Johnson ◽  
Yeoungjee Cho ◽  
Benedicte Sautenet ◽  
Jenny Shen ◽  
...  
Keyword(s):  
Peritoneal Dialysis ◽  
Patient Reported Outcomes ◽  
Randomized Trials ◽  
Primary Outcome ◽  
Median Number ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Inform Decision Making ◽  
Solute Clearance

Abstract Background Randomized trials can provide evidence to inform decision-making but this may be limited if the outcomes of importance to patients and clinicians are omitted or reported inconsistently. We aimed to assess the scope and heterogeneity of outcomes reported in trials in peritoneal dialysis (PD). Methods We searched the Cochrane Kidney and Transplant Specialized Register for randomized trials in PD. We extracted all reported outcome domains and measurements and analyzed their frequency and characteristics. Results From 128 reports of 120 included trials, 80 different outcome domains were reported. Overall, 39 (49%) domains were surrogate, 23 (29%) patient-reported and 18 (22%) clinical. The five most commonly reported domains were PD-related infection [59 (49%) trials], dialysis solute clearance [51 (42%)], kidney function [45 (38%)], protein metabolism [44 (37%)] and inflammatory markers/oxidative stress [42 (35%)]. Quality of life was reported infrequently (4% of trials). Only 14 (12%) trials included a patient-reported outcome as a primary outcome. The median number of outcome measures (defined as a different measurement, aggregation and metric) was 22 (interquartile range 13–37) per trial. PD-related infection was the most frequently reported clinical outcome as well as the most frequently stated primary outcome. A total of 383 different measures for infection were used, with 66 used more than once. Conclusions Trials in PD include important clinical outcomes such as infection, but these are measured and reported inconsistently. Patient-reported outcomes are infrequently reported and nearly half of the domains were surrogate. Standardized outcomes for PD trials are required to improve efficiency and relevance.

scholarly journals Patient-reported outcomes in clinical practice

Hematology ◽  
2015 ◽  
Vol 2015 (1) ◽  
pp. 501-506 ◽  
Author(s):  
Sarah Dobrozsi ◽  
Julie Panepinto
Keyword(s):  
Clinical Practice ◽  
Patient Outcomes ◽  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Patient Reported Outcome ◽  
Physician Communication ◽  
Valuable Data ◽  
Patient Reported ◽  
Improve Patient

Abstract Patient-reported outcome (PRO) measurement plays an increasingly important role in health care and understanding health outcomes. PROs are any report of a patient's health status that comes directly from the patient, and can measure patient symptoms, patient function, and quality-of-life. PROs have been used successfully to assess impairment in a clinical setting. Use of PROs to systematically quantify the patient experience provides valuable data to assist with clinical care; however, initiating use of PROs in clinical practice can be daunting. Here we provide suggestions for implementation of PROs and examples of opportunities to use PROs to tailor individual patient therapy to improve patient outcomes, patient–physician communication, and the quality of care for hematology/oncology patients.

scholarly journals Characteristics and patient-reported outcomes associated to dropout in severely affected oncological patients

2021 ◽  
Author(s):  
Pimrapat Gebert ◽  
Daniel Schindel ◽  
Johann Frick ◽  
Liane Schenk ◽  
Ulrike Grittner
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Cancer Patients ◽  
Patient Reported Outcomes ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Poor Quality ◽  
Drop Out ◽  
Patient Reported

Abstract BackgroundPatient-reported outcome measures (PROMs) are commonly used and are surrogates for clinical outcomes in cancer research. In the research setting of very severe diseases such as cancer, it is difficult to avoid the problem of incomplete questionnaires from drop-out or missing data due to patients who deceased during observation period. We aimed to explore patient characteristics and patient-reported outcomes associated with the time-to-dropout. MethodsIn the Oncological Social Care Project (OSCAR) study the condition of participants was assessed four times within 12 months (t0: baseline, t1: 3 months, t2: 6 months, and t3: 12 months) by validated PROMs. We performed competing-risks regression based on Fine and Gray’s proportional sub-distribution hazards model for exploring factors associated with time-to-dropout. Death was considered as competing risk. ResultsThree hundred sixty-two participants were analyzed in the study. 193 (53.3%) completed follow-up at 12 months, 67 (18.5%) patients dropped out, and 102 patients (28.2%) died during the study period. Poor subjective social support was related to higher risk for drop-out (SHR=2.10; 95%CI: 1.01 – 4.35). Lower values in health-related quality of life were related to drop-out and death. The subscales global health status/QoL, role functioning, physical functioning, and fatigue symptom in the EORTC QLQ-C30 were key characteristics associated with early drop-out.ConclusionSeverely affected cancer patients with poor social support and poor quality of life seem more likely to drop out of studies compared to patients with higher levels of social support and quality of life. This should be considered when planning studies assessing cancer patients. Methods to monitor drop-outs timely and handle missing outcomes might be used. Results of such studies have to be interpreted with caution in light of the particular drop-out mechanisms.

Patient reported outcome – Welche Faktoren beeinflussen die Qualität der Angaben sowie die Adhärenz der Patienten?

2017 ◽  
Vol 22 (06) ◽  
pp. 274-275
Author(s):  
Helena Thiem
Keyword(s):  
Patient Reported Outcomes ◽  
Monitoring Program ◽  
Real Life ◽  
Patient Reported Outcome ◽  
Clinical Routine ◽  
Oder Eine ◽  
Outcome Monitoring ◽  
Patient Reported

Gamper EM et al. Evaluation of Noncompletion Bias and Long-Term Adherence in a 10-Year Patient-Reported Outcome Monitoring Program in Clinical routine. Value in Health 2017; 20: 610-617 Die Datenqualität aus der klinischen Forschung ist nicht zuletzt für die Entscheidungsträger im Gesundheitswesen von großer Bedeutung. So sollen Risiken, Nutzen und Kosten medizinischer Interventionen sowohl unter patientenrelevanten als auch gesundheitspolitischen Aspekten beleuchtet werden. Derzeit existieren nur wenige Kenntnisse darüber, wie nachhaltig und repräsentativ die realitätsbezogenen „real-life“-Daten aus patient reported outcomes (PROs) sind. In einer Auswertung von PRO-Daten sollten mögliche Einflussfaktoren für unvollständige Angaben oder eine geringe Adhärenz ausgemacht werden.

scholarly journals How Oncologists Perceive the Availability and Quality of Information Generated From Patient-Reported Outcomes (PROs)

2019 ◽  
Vol 7 (2) ◽  
pp. 217-224
Author(s):  
Michael Shea ◽  
Céline Audibert ◽  
Mark Stewart ◽  
Brittany Gentile ◽  
Diana Merino ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Patient Reported Outcome ◽  
Quality Metrics ◽  
Quality Of Information ◽  
Health Records ◽  
Scientific Rigor ◽  
Patient Reported ◽  
Rate Information ◽  
Clinician Perspectives

Background: Despite increased incorporation of patient-reported outcome (PRO) measures into clinical trials, information generated from PROs remains largely absent from drug labeling and electronic health records, giving rise to concerns that such information is not adequately informing clinical practice. Objective: To evaluate oncologists’ perceptions concerning the availability and quality of information generated from PRO measures. Additionally, to identify whether an association exists between perceptions of availability and attitudes concerning quality. Method: An online, 11-item questionnaire was developed to capture clinician perspectives on the availability and use of PRO data to inform practice. The survey also asked respondents to rate information on the basis of 4 quality metrics: “usefulness,” “interpretability,” “accessibility,” and “scientific rigor.” Results: Responses were received from 298 of 1301 invitations sent (22.9% response rate). Perceptions regarding the availability of PRO information differed widely among respondents and did not appear to be linked to practice setting. Ratings of PRO quality were generally consistent, with average ratings for the 4 quality metrics between “satisfactory” and “good.” A relationship was observed between ratings of PRO data quality and perceptions of the availability. Conclusion: Oncologists’ attitudes toward the quality of information generated from PRO measures are favorable but not enthusiastic. These attitudes may improve as the availability of PRO data increases, given the association we observed between oncologists’ ratings of the quality of PRO information and their perceptions of its availability.

Enhancing quality of prosthetic services with process and outcome information

2016 ◽  
Vol 41 (2) ◽  
pp. 164-170 ◽  
Author(s):  
Allen W Heinemann ◽  
Linda Ehrlich-Jones ◽  
Lauri Connelly ◽  
Patrick Semik ◽  
Stefania Fatone
Keyword(s):  
Quality Improvement ◽  
Performance Management ◽  
The United States ◽  
Routine Care ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Outcome Monitoring ◽  
Patient Reported ◽  
Functional Scores

Background: Prosthetic clinics in the United States must attain accreditation in order to receive reimbursement from Medicare. The accreditation process requires clinics to establish and implement performance management plans and quality improvement activities. This report describes the experience of seven prosthetic clinics in collecting patient-reported outcome data and using it to improve quality of services. Objectives: To describe the experience of prosthetic clinics implementing outcome monitoring and quality improvement activities as part of routine patient care. Study design: Qualitative, ethnographic design. Methods: Clinics incorporated the Orthotics Prosthetics Users’ Survey into routine care for patients aged 18 years and older who received a new lower limb prosthesis or socket. Orthotics Prosthetics Users’ Survey measures lower extremity functional status, quality of life, and satisfaction with device and services. Clinics selected Orthotics Prosthetics Users’ Survey-derived indicators on which to implement quality improvement action plans. Results: Seven clinics participated, but only three were able to sustain data collection. Two clinics initiated quality improvement activities focused on improving declining satisfaction or functional scores. Conclusions: Quality improvement activities based on patient-reported outcomes require a high degree of organizational commitment and support. External facilitation can support clinics’ quality improvement activities. Clinical relevance This project illustrates the challenges of sustaining quality improvement activities using patient-reported outcome data in prosthetic clinics.

scholarly journals Emergency Laparotomy Follow-Up Study (ELFUS): prospective feasibility investigation into postoperative complications and quality of life using patient-reported outcome measures up to a year after emergency laparotomy

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
D. I. Saunders ◽  
R. C. F. Sinclair ◽  
B. Griffiths ◽  
E. Pugh ◽  
D. Harji ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Significant Risk ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Emergency Laparotomy ◽  
Patient Reported ◽  
Severity Grading ◽  
Assess Quality

Abstract Background Emergency laparotomy carries a significant risk profile around the time of surgery. This research aimed to establish the feasibility of recruitment to a study using validated scoring tools to assess complications after surgery; and patient-reported outcome measures (PROMs) to assess quality of life and quality of recovery up to a year following emergency laparotomy (EL). Methods We used our local National Emergency Laparotomy Audit (NELA) register to identify potential participants at a single NHS centre in England. Complications were assessed at 5, 10 and 30 days after EL. Patient-reported outcome measures were collected at 1, 3, 6 and 12 months after surgery using EQ5D and WHODAS 2.0 questionnaires. Results Seventy of 129 consecutive patients (54%) agreed to take part in the study. Post-operative morbidity survey data was recorded from 63 and 37 patients at postoperative day 5 and day 10. Accordion Complication Severity Grading data was obtained from 70 patients. Patient-reported outcome measures were obtained from patients at baseline and 1, 3, 6 and 12 months after surgery from 70, 59, 51, 48, to 42 patients (100%, 87%, 77%, 75% and 69% of survivors), respectively. Conclusions This study affirms the feasibility of collecting PROMs and morbidity data successfully at various time points following emergency laparotomy, and is the first longitudinal study to describe quality of life up to a year after surgery. This finding is important in the design of a larger observational study into quality of life and recovery after EL.

scholarly journals Integrating Electronic Patient-Reported Outcome Measures into Routine HIV Care and the ANRS CO3 Aquitaine Cohort�s Data Capture and Visualization System (QuAliV): Protocol for a Formative Research Study (Preprint)

2017 ◽  
Author(s):  
Diana Barger ◽  
Olivier Leleux ◽  
Valérie Conte ◽  
Vincent Sapparrart ◽  
Marie Gapillout ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Patient Reported Outcome ◽  
Hiv Care ◽  
People Living With Hiv ◽  
Web Based ◽  
Visualization System ◽  
Patient Reported ◽  
Living With Hiv

BACKGROUND Effective antiretroviral therapy has greatly reduced HIV-related morbidity and mortality, dramatically changing the demographics of the population of people living with HIV. The majority of people living with HIV in France are well cared for insofar as their HIV infection is concerned but remain at risk for age-associated comorbidities. Their long-term, potentially complex, and growing care needs make the routine, longitudinal assessment of health-related quality of life and other patient-reported outcomes of relevance in the current treatment era. OBJECTIVE We aim to describe the development of a Web-based electronic patient-reported outcomes system for people living with HIV linked to the ANRS CO3 Aquitaine cohort’s data capture and visualization system (ARPEGE) and designed to facilitate the electronic collection of patient-reported data and ultimately promote better patient-physician communication and quality of care (both patient satisfaction and health outcomes). METHODS Participants who meet the eligibility criteria will be invited to engage with the Web-based electronic patient-reported outcomes system and provided with the information necessary to create a personal patient account. They will then be able to access the electronic patient-reported outcomes system and complete a set of standardized validated questionnaires covering health-related quality of life (World Health Organization's Quality of Life Instrument in HIV infection, named WHOQOL-HIV BREF) and other patient-reported outcomes. The information provided via questionnaires will ultimately be presented in a summary format for clinicians, together with the patient’s HIV care history. RESULTS The prototype of the Web-based electronic patient-reported outcome system will be finalized and the first 2 formative research phases of the study (prototyping and usability testing) will be conducted from December 2017 to May 2018. We describe the sequential processes planned to ensure that the proposed electronic patient-reported outcome system is ready for formal pilot testing, referred to herein as phases 1a and 1b. We also describe the planned pilot-testing designed to evaluate the acceptability and use of the system from the patient’s perspective (phase 2). CONCLUSIONS As the underlying information technology solution, ARPEGE, has being developed in-house, should the feasibility study presented here yield promising results, the panel of services provided via the proposed portal could ultimately be expanded and used to experiment with health-promoting interventions in aging people living with HIV in hospital-based care or adapted for use in other patient populations. CLINICALTRIAL ClinicalTrials.gov NCT03296202; https://clinicaltrials.gov/ct2/show/NCT03296202 (Archived by WebCite at http://www.webcitation.org/6zgOBArps) REGISTERED REPORT IDENTIFIER RR1-10.2196/9439

scholarly journals Patient-Reported Outcome Measures in Pancreatic Cancer Receiving Radiotherapy

Cancers ◽  
2020 ◽  
Vol 12 (9) ◽  
pp. 2487
Author(s):  
Ramez Kouzy ◽  
Joseph Abi Jaoude ◽  
Daniel Lin ◽  
Nicholas D. Nguyen ◽  
Molly B. El Alam ◽  
...  
Keyword(s):  
Pancreatic Cancer ◽  
Patient Reported Outcomes ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
European Organization ◽  
Patient Reported ◽  
Pro Tools ◽  
Pro Instruments ◽  
Selection Of

Pancreatic cancer and its treatment often dramatically impact patients’ quality of life (QoL). Given this, as well as increased focus on QoL measures in clinical oncology, there has been a rise in the number of instruments that measure patient-reported outcomes (PROs). In this review, we describe the landscape of different PRO instruments pertaining to pancreatic cancer, with specific emphasis on PRO findings related to pancreatic cancer patients receiving radiotherapy (RT). Twenty-five of the most commonly utilized PROs are compared in detail. Notably, most of the PRO tools discussed are not specific to pancreatic cancer but are generic and have been used in various malignancies. Published findings concerning PROs in pancreatic cancer involving RT are also extracted and summarized. Among the measures used, the European Organization for Research and Treatment Cancer QLQ-C30 was the most commonly utilized. We recommend a careful selection of PRO measures in clinical pancreatic cancer research and care and encourage the use of a combination of symptom-specific and global QoL tools to more fully capture patients’ perspectives.

scholarly journals Which patient-reported outcomes shall we use in hand surgery?

2019 ◽  
Vol 45 (1) ◽  
pp. 5-11 ◽  
Author(s):  
Miriam Marks
Keyword(s):  
Patient Reported Outcomes ◽  
Outcome Measurement ◽  
Hand Surgery ◽  
Daily Practice ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Instruments ◽  
Patient Reported ◽  
General Quality

Nowadays, the use of patient-reported outcome measures to monitor a treatment effect in daily practice or to quantify study outcomes is indispensable. In hand surgery, there is a wide variety available. This article provides an overview about the most common hand-specific, upper-extremity specific and general quality of life patient-reported outcome measurement instruments with adequate psychometric properties. A checklist and a decision tree are provided for choosing the appropriate instrument when evaluating patients with hand conditions.

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