Showing 8 ideas for tag "life"

Goal 2: Reduce Human Disease

Enhanced Pain Research in Sickle Cell Disease

There is a need for more enhanced pain research in order to help improve sickle cell disease patient outcomes and quality of life.

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

Details on the impact of addressing this CQ or CC

Pain is the most common clinical manifestation of sickle cell disease (SCD) and accounts for a large proportion of emergency department visits and hospitalizations. Due to its impact on the patients’ quality of life, there is a need for more basic and clinical research studies focused on understanding the mechanisms of different pain syndromes as well as the role of neurotransmitters and inflammation in acute and chronic SCD pain. Also, comparative effectiveness studies in the management of chronic pain will be crucial in helping to improve the patients’ overall quality of life.

Name of idea submitter and other team members who worked on this idea Alice Kuaban on behalf of the American Society of Hematology (ASH)

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39 net votes
58 up votes
19 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 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 1: Promote Human Health

Early Life Elements

What are the early life elements that contribute to the development of chronic lung disease? Strategies need to be developed for treatment/prevention of these elements.

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

Details on the impact of addressing this CQ or CC

Neonatal and early life events can be essential elements for risk of development of chronic lung disease developing after age 40. Prevention of late life chronic lung disease may require that action takes place during the neonatal and childhood periods.

Feasibility and challenges of addressing this CQ or CC

Early life and late life events can be readily studied; however, integrating cause and effect relationships between the two is challenging due to the multiple decades of time separating these events.

Name of idea submitter and other team members who worked on this idea James Crapo

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5 net votes
16 up votes
11 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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Goal 2: Reduce Human Disease

Close the gap: Why do men die of cardiovascular disease (CVD) at an earlier age than women?

Despite evidence that women face challenges in receiving optimal CVD care, data show that men die at an earlier age than women of CVD. This health disparity remains unexplained and there are no specific interventions to address it.

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 comprehensive T1-T4 initiative is required to explore this health disparity, ranging from epidemiology to basic mechanisms , and to translate that knowledge into specific interventions.

Closing the gap would add ~4 years of life to men, representing a monumental health improvement.

Feasibility and challenges of addressing this CQ or CC

Conceptually this is straightforward since so many data are already available about sex differences in cardiovascular biology. The challenge is to review the information from this frame of reference and with the specific goal of identifying interventions.

Name of idea submitter and other team members who worked on this idea Barry Coller

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2 net votes
3 up votes
1 down votes
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Goal 2: Reduce Human Disease

Use Buteyko breath retraining to help patients manage and monitor their lung condition.

Buteyko Breath Retraining has been verified by the AHQR, Thorax Journal and other organizations as a legitimate technique to improve the symptoms of asthma and related respiratory illness. This simple technique could be instituted for a low cost to improve the quality of life of patients, reduce medications necessary for good control and save taxpayers and insurance companies a great deal of money.

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

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-15 net votes
1 up votes
16 down votes
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