Showing 26 ideas for tag "outcomes"

Goal 3: Advance Translational Research

Can we leverage exisiting registries to perform prospective trials and advance reduce the cost of doing research?

Current costs for multicenter randomized or non randomized trials are astronomical, and a major obstacle to rapid implementation of potential lifesaving discoveries.
In the field of hematopoietic cell transplantation (HCT) their is a federal mandate to have a treatment outcome registry.
Funds should be made available to leverage that registry to perform prospective trials either randomized or not since HCT programs need... more »

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Critical Challenge (CC)

Details on the impact of addressing this CQ or CC

This would allow for rapid exploration of novel concepts. Would reduce the time and cost of doing research in the HCT field. Would allow to explore questions related to best supportive care practices in HCT

Feasibility and challenges of addressing this CQ or CC

Very feasible. Last year we prepared a proposal in response to an RFA demonstrating that all elements are in place.
The CIBMTR has already shown that prospective observational studies are feasible and useful

Name of idea submitter and other team members who worked on this idea sergio giralt

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123 net votes
154 up votes
31 down votes
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Goal 3: Advance Translational Research

Improving heart, lung, blood, sleep Health Outcomes for Minority and Underserved Men

What are the best strategies to improve implementation of evidence-based practices (EBP) to enhance effective health risk communication strategies among racial and ethnic minority males and underserved men?
Examples of several issues that need to be addressed are:
• Need for better definition of the role of families/communities in EBP (as co-therapists).
• Requires less system fragmentation
• Need for improved measurement,... more »

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Details on the impact of addressing this CQ or CC

Our improved ability to develop, implement and disseminate EBPs tailored specifically for men in health disparity populations may help us move beyond current obstacles in addressing health inequities and improve health outcomes.
Some current challenges:
• High blood pressure affects more than 40 percent of African Americans.
• The odds for stroke, the third leading cause of death in the United States, are especially high for African American men at 70%.
• African Americans are about 50% more likely to experience stroke than Caucasians.
• Sleep apnea is seen more frequent among men than among women, particularly among African-American and Hispanic men.
• Life expectancy for African American men is 4.7 years less than for white men (2010).
• Native American men have an average life expectancy of 71 years old compared to white men who have an average life expectancy of 76.5 year.

Feasibility and challenges of addressing this CQ or CC

• Shifting demographics of race as well as ageing of the population in this country will have a major impact on the utilization, organization and delivery of health care.
• Country acknowledges significant economic burden of health inequities in the U.S. in the near future.
• Hospitals and health systems are working hard to align quality improvement goals with disparities solutions. Opportunity to leverage these efforts for the development and implementation of targeted health disparities initiatives is timely.
• HL has a number of large population-based studies (such as JHS, Strong Heart, Hispanic Community Health) that could be leveraged to specifically identify EBP for wider implementation and dissemination to underserved areas.

Name of idea submitter and other team members who worked on this idea NHLBI Staff

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14 net votes
32 up votes
18 down votes
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Goal 1: Promote Human Health

Improving longterm outcomes after surgery for congenital heart disease

Survival has improved but neurobehavioral disabilty remains a common complication with adverse impacts on quality of life, educational and occupational attainments, and resource utilization. There is increasing evidence that brain development is abnormal, and leads to a rrisk of peri-operative brain injury.

Studies are needed to;
1. Further define the prevalence and spectrum of neurobehavioral disability.
2, Understand... more »

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Critical Challenge (CC)

Details on the impact of addressing this CQ or CC

Survival has improved following surgery for complex congenital heart disease. There is an ever increasing population of adolescents and adults with repaired congenital heart defects. Neurobehvaioral disability can be identified in over 50% of survivors, including ADHD, autism spectrum disorders, learning disabilities and impaired motor skills. These deficits adversly affect their schools and job performance, as well as interactions with their peers and families. The need for special education and other rehabilitative services leads to significant resurce utilization and costs to society. Development of novel neuroprotective therapies will significantly improve the long-term outcomes for these fragile children.

Feasibility and challenges of addressing this CQ or CC

Because of the small numbers of patients treated at single instituions, this project will require multi-institutional collaboration with long-term follow-up assessments. There is need for collabortaive databases, standardized neurodevelopment evaluations, and acquistion of genomic data. In particular, there is a need to development methodolgy to track outcomes from fetal life to adulthood.

Name of idea submitter and other team members who worked on this idea J William Gaynor

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18 net votes
23 up votes
5 down votes
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Goal 2: Reduce Human Disease

Improving cardiorespiratory fitness prior to hematopoietic cell transplantation

Can cardiorespiratory fitness prior to hematopoietic cell transplantation be improved and will this limit morbidity and mortality following transplantation?

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Details on the impact of addressing this CQ or CC

HCT is associated with high rates of morbidity and mortality from transplant-related complications. Reduction in transplant-related mortality would lead to more favorable risk/benefit assessments for the ability of transplant to cure life-threatening hematologic disorders including non-malignant conditions. Comorbidity and patient-reported functional status impairment are known to increase the risk for transplant-related mortality. Single institution studies suggest that cardiorespiratory fitness may serve a similar role as a predictive pre-transplant variable. Unlike comorbidity, cardiorespiratory fitness is potentially modifiable. However, the optimal way to improve cardiorespiratory fitness through pre-transplant exercise and lifestyle interventions is not known. Understanding how to improve cardiorespiratory fitness through a short term intervention would also benefit other health conditions relevant to the NHLBI in which future treatment is intensive and associated with significant risk.

Feasibility and challenges of addressing this CQ or CC

Understanding how to improve cardiorespiratory fitness in a short period of time will require a research agenda that addresses the following challenges: how to measure cardiorespiratory fitness in a generalized and scalable way, which may or may not require maximal exercise testing for all participants; how to design intensive exercise interventions that are at least partially home-based, in order to minimize resource burden on patients and centers; and how to personalize intervention delivery and testing in a way that is tailored to the baseline fitness levels and capabilities of each participant. Meeting these challenges will enable large-scale, personalized exercise testing and intervention delivery in other non-transplant populations.

Name of idea submitter and other team members who worked on this idea William Wood, Thomas Shea

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21 net votes
42 up votes
21 down votes
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Goal 2: Reduce Human Disease

Improving patient-centered outcome assessments in HLBS studies

What types of newer patient-centered quality of life assessment tools can be employed in heart, lung, blood and sleep studies so that they can be validated and refined to improve our measurement of quality of life outcomes in populations of interest to NHLBI?

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Details on the impact of addressing this CQ or CC

Improving our ability to precisely measure heart, lung, blood, and sleep patients' quality of life can enable evaluation of a treatment's impact on patient-centered outcomes such as overall quality of life and its components -- pain, symptoms, and a patients' social, psychological, and physical functioning.

Feasibility and challenges of addressing this CQ or CC

New tools have been developed, notably through the PROMIS common fund project, that allow potentially more precise, reliable, valid and sensitive measurement of Q of L outcomes, with less patient burden. These tools are available but require validation in HLBS populations to allow widespread adoption and routine use in NHLBI-supported clinical trials and population studies.
Advances in biomedical science mean we are living longer with chronic diseases, and the goal of treatment increasingly focuses on disease management, maximizing function, and improving quality of life, not just lengthening life. In addition, patient-centered approaches to health care encourage a view of patients as “whole persons” with emphasis on function and capturing the "patient's voice," not just mortality/morbidity outcomes. Functional and quality of life outcomes, e.g., assessment of pain, symptoms, emotional distress, physical & social functioning, are critically important outcomes to many HLBS patients, but their measurement requires self-reports of patient experiences and thus pose challenges to precise, valid and reliable assessment.

Assessment tools using computerized adaptive testing (CAT), such as those developed in the Patient-Reported Outcomes Measurement Information System (PROMIS) project, have been shown to be precise, valid, sensitive to change and easier to administer than traditional Q of L measures in a limited number of studies, but they require validation in HLBS patient populations before they can be used more widely in NHLBI-funded studies.

Name of idea submitter and other team members who worked on this idea NHLBI Staff

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11 net votes
20 up votes
9 down votes
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Goal 1: Promote Human Health

Hypertension in children and adolescents - diagnosis and long term outcomes in large populations

Can we improve the thresholds for defining hypertension in children and adolescents based on risks for future adverse cardiovascular sequelae? In addition, can we to better understand how early identification of hypertension impacts long term health outcomes?

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Details on the impact of addressing this CQ or CC

Current thresholds for diagnosing hypertension in children and adolescents are based on the distribution of BP in general populations but are not linked to clinical outcomes. Most elevated BP in children and adolescents remains unrecognized, and there is little population level data on the benefits of early idnetification and treatment. There is a critical need for longitudinal data on BP with considerations that thresholds for diagnosing hypertension, evaluating for secondary causes and treating in this age group shoudl be linked to risks for long term cardiovasular sequelae. Important to consider is that labeling a child with mildly elevated BP as having hypertension could adversely impact family functioning and childhood health.

Feasibility and challenges of addressing this CQ or CC

This could be addressed through a population-based, observational cohort study, spanning childhood through young adulthood.

Name of idea submitter and other team members who worked on this idea Elyse Kharbanda

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12 net votes
16 up votes
4 down votes
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Goal 3: Advance Translational Research

Effect of short-term vs. chronic pulmonary rehabilitation on patient-reported outcomes

What is the comparative effectiveness of short-term vs. chronic (indefinite) pulmonary rehabilitation on patient-reported outcomes (symptom frequency, activities of daily living, quality of life, sleep quality, exacerbations)?

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

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14 net votes
19 up votes
5 down votes
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Goal 3: Advance Translational Research

Brief vs. teach-to-goal interventions in teaching patients with COPD to use inhalers

What is the comparative effectiveness of brief interventions to teach patients respiratory inhaler use (e.g., verbal and written instructions) vs. teach-to-goal interventions (brief interventions plus demonstration of correct technique, patient teach-back, feedback, and repeat instruction if needed) on respiratory inhaler technique and patient-reported outcomes (symptom frequency, activities of daily living, quality of... more »

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Details on the impact of addressing this CQ or CC

Respiratory inhalers come in a staggering array of types, contents, and methods of use. It is not uncommon for the COPD patient to use two or more types of inhalers each day. The misuse of the application of these devices is rampant, due to confusion, forgetfulness, or lack of proper education in their use. If multiple inhalers are used by the patient, many of them must be used in a particular order, and the inhalation methods may will be vastly different.
Understanding on the part of the patient and/or caregiver begins with the initial instruction in the use of inhalers by medical personnel. They must find, and use, methods of instruction that are understandable and retainable by the patient.

Feasibility and challenges of addressing this CQ or CC

The study of comparing the two type of instruction is entirely feasible, while the challenges lie with studying a large enough sample of patients to encompass the ranges of COPD stages, mental capacity, and degree of compliance of the patients.

Name of idea submitter and other team members who worked on this idea Jim Nelson - Patient, Arizona State Advocacy Captain

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13 net votes
16 up votes
3 down votes
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Goal 3: Advance Translational Research

The impact of team consultation on COPD outcomes

Does use of periodic and automatic multidisciplinary team consultation improve care and health outcomes of patients with COPD?

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Name of idea submitter and other team members who worked on this idea John Linnell, COPD Foundation Minnesota State Captain

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16 net votes
18 up votes
2 down votes
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Goal 3: Advance Translational Research

The effect of continuous LTOT in COPD targeting fixed oxygen flow rates vs. oxygen saturation on patient-reported outcomes

What is the comparative effectiveness of prescribing continuous LTOT in COPD that targets fixed oxygen flow rates vs. oxygen saturation on patient-reported outcomes (symptom frequency, activities of daily living, quality of life, sleep quality, exacerbations)?

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Name of idea submitter and other team members who worked on this idea Amelia Mutso, PhD, collaborator with COPD Foundation

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13 net votes
16 up votes
3 down votes
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Goal 3: Advance Translational Research

Palliative and hospice care for COPD patients

Does palliative care and/or hospice care as practiced across communities improve end-of-life care for COPD – specifically, does it reduce the burden of symptoms, improve HRQoL and satisfaction, reduce utilization in last 6 months of life (i.e. hospital visits, cost, invasive ventilation use, etc), improve the end-of-life experience, and increase the concordance of place of death to expressed patient preferences?

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

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12 net votes
16 up votes
4 down votes
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Goal 3: Advance Translational Research

The effectiveness of a protocol-based screening in treating common COPD comorbidities

Does a protocol-based screening for commonly occurring comorbid conditions in patients with COPD (eg. CAD, CHF, depression, sleep apnea) improve management and outcomes for patients with COPD?

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Details on the impact of addressing this CQ or CC

Many times co- morbidities are not address appropriately in patients with COPD- a protocol- based screening would support better identification and adherence to guidelines and would improve management and outcomes of individuals with COPD>

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13 net votes
15 up votes
2 down votes
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Goal 3: Advance Translational Research

Use of symptoms vs spirometry in increasing patient and provider adherence to guidelines

What is the comparative effectiveness of using symptoms vs. spirometry in increasing patient and provider adherence to COPD treatment guidelines and patient-reported outcomes (symptom frequency, activities of daily living, quality of life, sleep quality, exacerbations)?

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Details on the impact of addressing this CQ or CC

COPD is underdiagnosed. The lack of recognition of COPD risk by physicians and patients themselves is well known, with many undiagnosed COPD patients presenting for the first time with late stage COPD. Currently used cut-points based on a fixed ratio of FEV1/FVC may overestimate the number of elderly patients with COPD, particularly with mild disease, because of changes in lung volumes with aging. It has been suggested that using a cut-point based on the normal distribution of FEV1/FVC values may decrease the misclassification rate. Other strategies have been proposed for risk assessment as adjuncts to diagnostic classification (e.g., Fragoso et al. J Am Geriatr Soc 2008, 56:1014-1020). Pertinent references: Guideline #1 in Qaseem et al., strong recommendation, moderate-quality evidence; GOLD, 2008 and the 2005 American Thoracic Society/European Respiratory Society Task Force Report, standards for the diagnosis and management of patients with COPD.
Although there are ample guidance to help providers identify and evaluate patients likely to have earlier stage COPD, few are referred to spirometric testing. Subsequent spirometry provides a good working yield of true positives, which is frequently superior to pre-test probabilities of other, more complex and expensive medical tests commonly ordered for other conditions (colonoscopy,lung cancer), why is it so much more difficult to provide spirometry? COPD will remain undertreated as long as it remains underdiagnosed.

Name of idea submitter and other team members who worked on this idea Helene Gussin, PhD

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9 net votes
12 up votes
3 down votes
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Goal 3: Advance Translational Research

Definitive Evidence of the Effectiveness of Pulmonary Rehabilitation

What is the clinical effectiveness of pulmonary rehabilitation in reducing hospital admissions and readmissions, improving health outcomes such as exercise tolerance and dyspnea, and positively impacting patient centered outcomes. Does this effectiveness vary based on the types of settings rehab is conducted in, urban vs rural environments, the components to the program, the timing of the program and the overall support... more »

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Details on the impact of addressing this CQ or CC

Pulmonary rehabilitation is a critical component in the treatment of COPD patients but several barriers persist that have resulted in very limited access to rehab, low referral rates for eligible patients and limited standardization of best practices within the rehab facilities that do exist. Large, definitive studies accounting for patient subgroups, site characteristics and program components can generate the level of evidence needed to expand access, educate providers and improve referral systems and create quality programs. This level of evidence is necessary to change policy to properly value the role of pulmonary rehabilitation and to convince integrated health systems in a value based market that pulmonary rehabilitation is beyond a doubt, a requirement of providing quality COPD care.

Name of idea submitter and other team members who worked on this idea Grace Anne Dorney Koppel, COPD Foundation Board of Directors, COPD Patient Advocate

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9 net votes
12 up votes
3 down votes
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Goal 3: Advance Translational Research

Developing adherence research to reduce unnecessary mobility/mortality/cost

From Cochrane Review NOV 20 2014
RB Haynes

“It is uncertain how medicine adherence can consistently be improved so that the full health benefits of medicines can be realized. We need more advanced methods for researching ways to improve medicine adherence, including better interventions, better ways of measuring adherence, and studies that include sufficient patients to draw conclusions on clinically important effects.”... more »

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Critical Challenge (CC)

Details on the impact of addressing this CQ or CC

Effective medication exists to prevent or control most chronic diseases. The problem is that patients do not follow medical recommendations for a myriad of reasons. UNNECESSARY mortality, morbidity, poor quality of life and cost are the result of nonadherence. Intensive systematic research over a decade is the key to address the proposed challenge.

Feasibility and challenges of addressing this CQ or CC

I have developed an hypothesis, currently being examined in a controlled study by NIHLBI, that merits further evaluation. One component(J Allergy Clin Immunol: In Practice 2013;1:23) is objective measuring of asthma patients with MDI electronic monitors that need technological improvement (battery life, measure inspiration). Patients evaluated in emergency department for most chronic diseases can be objectively evaluated for adherence by assays of medication that currently are available since they exist and necessary for medication to be approved by the FDA. Other components include: coordinated identification of patient barriers; application of clinical decision support strategies to specific barriers identified; patient-centered communication skills to deliver strategies in one delivery system. Many other interventions by other researchers may also be considered during the decade.

Name of idea submitter and other team members who worked on this idea Andrew Weinstein and Asthma and Allergy Foundation of America

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5 net votes
7 up votes
2 down votes
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