Implementation of a Patient-Reported Outcomes Measure for Patients with Advanced Heart Failure

2020 ◽  
Author(s):  
Leanne Burke

Heart failure (HF) is associated with high morbidity, mortality, and substantial cost. Despite treatment advancements, the quality of care and quality of life (QoL) remains suboptimal. Interventions to improve QoL, like palliative care (PC), are lacking. Aligning clinical management and patient goals of care is critical to improving outcomes and highlights patient-centeredness. Strategies to promote patient-centered care, such as utilizing patient-reported outcome measures (PROM), should be standard of care. Purpose/Aims: To improve QoL and quality of care for HF patients by integrating the Kansas City Cardiomyopathy Questionnaire (KCCQ-12) as standard clinical practice. The aims were to use the KCCQ-12 as the new standard of care, evaluate the impact on patients’ QoL and evaluate the impact on quality of care.

2019 ◽  
Author(s):  
Emily Seto ◽  
Heather Ross ◽  
Alana Tibbles ◽  
Steven Wong ◽  
Patrick Ware ◽  
...  

BACKGROUND Patients with heart failure (HF) are at the highest risk for hospital readmissions during the first few weeks after discharge when patients are transitioning from hospital to home. Telemonitoring (TM) for HF management has been found to reduce mortality risk and hospital readmissions if implemented appropriately; however, the impact of TM targeted for patients recently discharged from hospital, for whom TM might have the biggest benefit, is still unknown. Medly, a mobile phone–based TM system that is currently being used as a standard of care for HF at a large Canadian hospital, may be an effective tool for the management of HF in patients recently discharged from hospital. OBJECTIVE The objective of the <italic>Medly-After an Incidence of acute Decompensation</italic> (Medly-AID) trial is to determine the effect of Medly on the self-care and quality of life of patients with HF who have been recently discharged from hospital after an HF-related decompensation. METHODS A multisite multimethod randomized controlled trial (RCT) will be conducted at 2 academic hospitals and at least one community hospital to evaluate the impact of Medly-enabled HF management on the outcomes of patients with HF who had been hospitalized for HF-related decompensation and discharged during the 2 weeks before recruitment. The trial will include 144 participants with HF (74 in each control and intervention groups). Control patients will receive standard of care, whereas patients in the intervention group will receive standard of care and Medly. Specifically, patients in the intervention group will record daily weight, blood pressure, and heart rate and answer symptom-related questions via the Medly app. Medly will generate automated patient self-care messages such as to adjust diuretic medications, based on the rules-based algorithm personalized to the individual patient, and send real-time alerts to their health care providers as necessary. All patients will be followed for 3 months. Primary outcome measures are self-care and quality of life as measured through the validated questionnaires Self-Care of Heart Failure Index, EQ-5D-5L, and the Kansas City Cardiomyopathy Questionnaire-12. Secondary outcome measures for this study include cost of health care services used and health outcomes. RESULTS Patient recruitment began in November 2018 at the Sunnybrook Health Sciences Centre, with a total of 35 participants recruited by July 30, 2019 (17 in the intervention group and 18 in the control group). The final analysis is expected to occur in the fall of 2020. CONCLUSIONS This RCT will be the first to assess the effectiveness of the Medly TM system for use following discharge from hospital after a HF-related decompensation. CLINICALTRIAL ClinicalTrials.gov NCT03358303; https://clinicaltrials.gov/ct2/show/NCT03358303


Author(s):  
Heesoo Joo ◽  
Junsoo Lee ◽  
Brian A. Maskery ◽  
Chanhyun Park ◽  
Jonathan D. Alpern ◽  
...  

The price of certain antiparasitic drugs (e.g., albendazole and mebendazole) has dramatically increased since 2010. The effect of these rising prices on treatment costs and use of standard of care (SOC) drugs is unknown. To measure the impact of drug prices on overall outpatient cost and quality of care, we identified outpatient visits associated with ascariasis, hookworm, and trichuriasis infections from the 2010 to 2017 MarketScan Commercial Claims and Encounters and Multi-state Medicaid databases using Truven Health MarketScan Treatment Pathways. Evaluation was limited to members with continuous enrollment in non-capitated plans 30 days prior, and 90 days following, the first diagnosis. The utilization of SOC prescriptions was considered a marker for quality of care. The impact of drug price on the outpatient expenses was measured by comparing the changes in drug and nondrug outpatient payments per patient through Welch’s two sample t-tests. The total outpatient payments per patient (drug and nondrug), for the three parasitic infections, increased between 2010 and 2017. The increase was driven primarily by prescription drug payments, which increased 20.6–137.0 times, as compared with nondrug outpatient payments, which increased 0.3–2.2 times. As prices of mebendazole and albendazole increased, a shift to alternative SOC and non-SOC drug utilization was observed. Using parasitic infection treatment as a model, increases in prescription drug prices can act as the primary driver of increasing outpatient care costs. Simultaneously, there was a shift to alternative SOC, but also to non-SOC drug treatment, suggesting a decrease in quality of care.


2018 ◽  
Vol 27 (4) ◽  
pp. 385-389
Author(s):  
Melek Simsek ◽  
Tineke M.L. Markus-de Kwaadsteniet ◽  
Danielle Van der Horst ◽  
Chris J.J. Mulder ◽  
Nanne K.H. De Boer

Background & Aim: Patient-reported outcomes and experiences are indicative of the impact and the quality of care. Thioguanine, a generic drug initially developed for leukemia, has been explored and relicensed as a certified treatment for patients with inflammatory bowel diseases (IBD). The patients‘ perception of this treatment has not been evaluated before. In this study, we aimed to assess self-reported experiences with thioguanine for IBD.Methods: Questionnaires were sent out to members of the Dutch National Crohn‘s and Colitis patient organization. The Treatment Satisfaction with Medicines Questionnaire (SATMED-Q) was used to address questions regarding the satisfaction and impact of thioguanine therapy on the disease and their daily life. Furthermore, data on demographics, disease and (historical) treatment characteristics were collected. Openended questions were used for additional comments to the questionnaire.Results: A total of 173 organization members (73% female) reported to be previous or current users of thioguanine. A total of 74% were satisfied with the effectiveness of thioguanine, whereas 5% were not. Eighty percent of the respondents were satisfied with the quality of care. A good or excellent impact on daily life was reported by 54%. A neutral or bad impact on daily life was reported by 40% and 6%, respectively. Improvement of disease activity was reported by 58%. This remained stable or worsened in 39% and 3%, respectively.Conclusion: In this self-report survey, among thioguanine treated patients with IBD who had failed with traditional therapies, 80% reported satisfaction with medical care and 74% with the effectiveness of the therapy. In the evaluation of new or rediscovered therapies, patient-reported outcomes and experiences should be considered as a key instrument.


2007 ◽  
Vol 154 (6) ◽  
pp. 1174-1183 ◽  
Author(s):  
Jennifer Cowger Matthews ◽  
Monica L. Johnson ◽  
Todd M. Koelling

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 10-10 ◽  
Author(s):  
Neeraj K. Arora ◽  
Christopher Gayer ◽  
William Lawrence ◽  
Vadim Gershteyn ◽  
Carly Parry ◽  
...  

10 Background: PCORI funds comparative effectiveness research (CER) which aims to produce evidence-based information to help people make informed health care decisions and improve outcomes that matter to patients. Cancer studies form one of the largest disease-specific PCORI-funded portfolios. Methods: We conducted a systematic analysis of PCORI’s cancer portfolio overall and of the subset of studies that focus on post-treatment survivorship. Results: As of June 2015, PCORI has funded 47 cancer projects totaling $125 million. Cancer studies account for 17% of PCORI’s dollar investment in CER research. These studies have focused on breast, lung, prostate, colorectal, cervical, ovarian, and pancreatic cancers as well as leukemia. A majority of PCORI-funded cancer studies are randomized trials (60% of studies, 72% of dollar investment). One-in-four studies address post-treatment survivorship (n = 12, $23 million). The 12 CER studies on post-treatment survivorship address a range of patient-centered issues. Four studies are evaluating different post-treatment surveillance approaches for breast (2 studies), colorectal, and lung cancer survivors respectively. Three studies are focusing on optimizing the care planning process for cancer survivors while another is evaluating the impact of an oncology medical home model on patient-centered outcomes. Four studies are addressing quality of life (QOL) issues, one is evaluating approaches for incorporating patient reported outcomes data in the clinical encounter, a second is evaluating a multi-component intervention to improve the QOL of cancer survivors, a third study is evaluating the comparative effectiveness of complementary therapies to treat symptoms, and another is addressing distress among caregivers of stem cell transplant survivors. Conclusions: PCORI-funded CER studies are rigorously evaluating the real world impact of a range of interventions aimed at optimizing the quality of care delivered to and outcomes experienced by cancer survivors. Our analysis of the cancer portfolio will inform future funding priorities aimed at improving patient-centered outcomes for cancer survivors.


10.2196/15753 ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. e15753 ◽  
Author(s):  
Emily Seto ◽  
Heather Ross ◽  
Alana Tibbles ◽  
Steven Wong ◽  
Patrick Ware ◽  
...  

Background Patients with heart failure (HF) are at the highest risk for hospital readmissions during the first few weeks after discharge when patients are transitioning from hospital to home. Telemonitoring (TM) for HF management has been found to reduce mortality risk and hospital readmissions if implemented appropriately; however, the impact of TM targeted for patients recently discharged from hospital, for whom TM might have the biggest benefit, is still unknown. Medly, a mobile phone–based TM system that is currently being used as a standard of care for HF at a large Canadian hospital, may be an effective tool for the management of HF in patients recently discharged from hospital. Objective The objective of the Medly-After an Incidence of acute Decompensation (Medly-AID) trial is to determine the effect of Medly on the self-care and quality of life of patients with HF who have been recently discharged from hospital after an HF-related decompensation. Methods A multisite multimethod randomized controlled trial (RCT) will be conducted at 2 academic hospitals and at least one community hospital to evaluate the impact of Medly-enabled HF management on the outcomes of patients with HF who had been hospitalized for HF-related decompensation and discharged during the 2 weeks before recruitment. The trial will include 144 participants with HF (74 in each control and intervention groups). Control patients will receive standard of care, whereas patients in the intervention group will receive standard of care and Medly. Specifically, patients in the intervention group will record daily weight, blood pressure, and heart rate and answer symptom-related questions via the Medly app. Medly will generate automated patient self-care messages such as to adjust diuretic medications, based on the rules-based algorithm personalized to the individual patient, and send real-time alerts to their health care providers as necessary. All patients will be followed for 3 months. Primary outcome measures are self-care and quality of life as measured through the validated questionnaires Self-Care of Heart Failure Index, EQ-5D-5L, and the Kansas City Cardiomyopathy Questionnaire-12. Secondary outcome measures for this study include cost of health care services used and health outcomes. Results Patient recruitment began in November 2018 at the Sunnybrook Health Sciences Centre, with a total of 35 participants recruited by July 30, 2019 (17 in the intervention group and 18 in the control group). The final analysis is expected to occur in the fall of 2020. Conclusions This RCT will be the first to assess the effectiveness of the Medly TM system for use following discharge from hospital after a HF-related decompensation. Trial Registration ClinicalTrials.gov NCT03358303; https://clinicaltrials.gov/ct2/show/NCT03358303 International Registered Report Identifier (IRRID) DERR1-10.2196/15753


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Alice Clark ◽  
Thim Prætorius ◽  
Eszter Török ◽  
Ulla Arthur Hvidtfeldt ◽  
Peter Hasle ◽  
...  

Abstract Background Decision-makers increasingly consider patient-reported outcomes as important measures of care quality. Studies on the importance of work-place social capital–a collective work-place resource–for the experience of care quality are lacking. We determined the association between the level of work-place social capital and patient-reported quality of care in 148 hospital sections in the Capital Region of Denmark. Methods This cross-sectional study combined section-level social capital from 5205 health care professionals and 23,872 patient responses about care quality. Work-place social capital encompassed three dimensions: trust, justice and collaboration. Patient-reported quality of care was measured as: overall satisfaction, patient involvement, and medical errors. Linear regression analysis and generalized linear models assessed the mean differences in patient reported experience outcomes and the risk of belonging to the lowest tertile of care quality. Results A higher level of work-place social capital (corresponding to the interquartile range) was associated with higher patient-reported satisfaction and inpatient and acute care patient involvement. The risk of a section belonging to the lowest tertile of patient involvement was lower in sections with higher social capital providing inpatient (RR = 0.39, 0.19–0.81 per IQR increase) and acute care (RR = 0.53, 0.31–0.89). Patient-reported errors were fewer in acute care sections with higher social capital (RR = 0.65, 0.43 to 0.99). The risk of being in the lowest tertile of patient-reported satisfaction was supported for acute care sections (RR = 0.47, 0.28–0.79). Conclusions Although we found small absolute differences in the association between patient-reported experience measures and social capital, even a small upward shift in the distribution of social capital in the hospital sector would, at the population level, have a large positive impact on patients’ care experience.


2010 ◽  
Author(s):  
J. A. Cully ◽  
L. L. Phillips ◽  
M. E. Kunik ◽  
M. A. Stanley ◽  
A. Deswal

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