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)?

Submitted by (@amutso)

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

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 »

Submitted by (@gacdk0)

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

Voting

9 net votes
12 up votes
3 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 »

Submitted by (@jimandmarynelson)

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

Voting

13 net votes
16 up votes
3 down votes
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Goal 2: Reduce Human Disease

Lack of large-scale data sources to track outcomes

The lack of large-scale data sources that provide a) detailed clinical phenotyping; b) longitudinal assessment of independent variables (incident events, medications, testing); c) collection of a broad range of outcomes, including patient-reported outcomes including health status.

Submitted by (@rebecca.lehotzky)

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

Name of idea submitter and other team members who worked on this idea : AHA Staff & Volunteers

Voting

7 net votes
10 up votes
3 down votes
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Goal 2: Reduce Human Disease

Biologic mechanisms of prolonged morbidity in survivors of ARDS and sepsis

What are the biologic mechanisms and risk factors that lead to prolonged morbidity in survivors of ARDS and sepsis? What factors during the acute disease phase distinguish patients that recover from those that develop long-term physical, psychological, or cognitive deficits?

Submitted by (@lar000)

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

Details on the impact of addressing this CQ or CC :

Reductions in mortality rates for ARDS and sepsis have led to an increase in the number of survivors. Many of these survivors develop new or worsened physical, mental, or cognitive morbidities that persist months or years after hospital discharge. Identifying the biologic mechanisms and risk factors during the acute disease phase that lead to prolonged morbidity could help develop therapies to prevent/treat the long-term morbidities and determine the subgroup of patients that interventions should target.

Feasibility and challenges of addressing this CQ or CC :

Research over the past several years has highlighted the increasing number of survivors of ARDS and sepsis that are at risk for long-term physical, psychological, and cognitive impairments. One challenge to answering this question is the limited availability of data and biospecimens of patients with ARDS or sepsis linked to long-term outcomes. Developing a robust resource for this work would require facilitation by NHLBI (potentially in collaboration with other NIH institutes).

Voting

-4 net votes
7 up votes
11 down votes
Active

Goal 3: Advance Translational Research

Developing Methods and Metrics for T4 Outcomes and Impact

How can methods and metrics capable of conducting high quality T4 research be developed to accurately capture outcomes and the overall impact new T4 knowledge has on population health for heart, lung, blood, sleep diseases and disorders?

Submitted by (@nhlbiforumadministrator1)

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

Details on the impact of addressing this CQ or CC :

High quality T4 research methods and metrics are needed to move the field of T4 translation research forward while linking large data sets from different sources.

Feasibility and challenges of addressing this CQ or CC :

Demand for high quality methods, metric and evaluation of T4 translation research interest is growing and needs to be addressed immediately to move the field forward.

Recent IOM/NRC studies recommended that the NIH and other research funding agencies support the development of more refined analytic methods and study designs for cross-national health research. These methods should include innovative study designs, creative uses of existing data, and novel analytical approaches to better elucidate the complex causal pathways. The T4 field has some specific metrics including acceptability, reach, adoption, appropriateness, feasibility, fidelity, cost, penetration, and sustainability, each with its standard measurement approach. In addition to a rigorous study design, including these metrics along with population level impact direct measures (e.g., morbidity, mortality) and intermediate measures (e.g. blood pressure reduction) will be critical to assess what has been accomplished and to define success. Finally, measuring the overall impact of new knowledge generated from T4 research is challenging because publication bibliometrics of high impact scholarly journals may not fully capture it.

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

Voting

-1 net votes
7 up votes
8 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 »

Submitted by (@nhlbiforumadministrator)

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

Voting

5 net votes
7 up votes
2 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?

Submitted by (@k.willard)

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

Voting

12 net votes
16 up votes
4 down votes
Active

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?

Submitted by (@wawood)

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

Voting

21 net votes
42 up votes
21 down votes
Active

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?

Submitted by (@elyse.o.kharbanda)

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

Voting

12 net votes
16 up votes
4 down votes
Active

Goal 3: Advance Translational Research

Effectiveness of three smoking cessation approaches

What is the comparative effectiveness and cost effectiveness of counseling plus nicotine replacement vs. counseling plus bupropion vs. counseling plus varenicline on smoking cessation rates, patient-reported outcomes (symptom frequency, activities of daily living, quality of life, sleep quality, exacerbations), and COPD and non-COPD morbidity/mortality?

Submitted by (@jkowalski)

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

Voting

1 net vote
4 up votes
3 down votes
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Goal 4: Develop Workforce and Resources

What Training Outcomes are Significant?

What trainee outcomes will best fulfill the mission of NHLBI, and what programs best promote these outcomes?

Submitted by (@nhlbiforumadministrator)

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

Details on the impact of addressing this CQ or CC :

A significant number of trainees do not become independent researchers but enter other career paths whose impact on the mission of NHLBI is unclear. A better understanding of the importance of these outcomes and the role of NHLBI-supported training in relation to our mission will inform the implementation and design of training strategies in the future.

Feasibility and challenges of addressing this CQ or CC :

OER is rapidly implementing automated approaches to replace the manual tracking of trainees and their subsequent career paths. This effort should facilitate our ability to look specifically at NHLBI-supported programs.

 

 

Challenge: Obtaining and integrating outcome data that is not included in NIH databases or eRA Commons

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

Voting

-6 net votes
10 up votes
16 down votes
Active