Goal 3: Advance Translational Research

The use of administrative and billing data in COPD care quality improvement

What is the validity of administrative/billing data to evaluate the quality of COPD care as part of quality improvement initiatives? What care practices can be assessed using these data?

Submitted by (@ngrude)

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 : Nina Bracken, COPD Foundation advocate

Voting

2 net votes
2 up votes
0 down votes
Active

Goal 2: Reduce Human Disease

Understanding of chronobiological systems

We know that all life functions are based on circadian and other rhythms; chronobiological systems are interdependent in intricate ways. Disturbances and disorders in one part of a system may affect other vital systems in unexpected but far-reaching ways. Many aspects of circadian rhythms and sleep-wake regulation in normal, healthy humans have been charted. Much of the knowledge thus gained is assumed to be valid also ...more »

Submitted by (@nma120)

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

Details on the impact of addressing this CQ or CC :

As research on the extrinsic Shift Work Disorder shows, disturbances of the normal person’s sleep-wake cycle have consequences. These may include excessive daytime sleepiness, increased risk of traffic and other accidents, dysregulation of metabolic and other systems, obesity, increased risk of cancer, cardiovascular diseases, mood disorders and other diseases. Normal people trying to function on an abnormal schedule may develop conditions that lead to disability or death. Intrinsic CSWD patients suffer many of the same conditions as well as others.

 

These patients desperately need answers: Why am I like this, Do I dare have children, Will it get worse as I age, Can anything be done in addition to light boxes, scototherapy and melatonin, What is really the best timing in use of these treatments, Will I get disability?

 

Research on these patients will likely lead to discoveries that could be the target for future studies, thus impacting the modern fields of sleep and circadian rhythms research.

Feasibility and challenges of addressing this CQ or CC :

The intrinsic CSWDs are:

 

1) Lifelong DSWPD, delayed sleep-wake phase disorder

2) Adolescent DSWPD

3) ASWPD, advanced sleep-wake phase disorder

4) ISWRD, irregular sleep-wake rhythm disorder

5) Blind Non-24, N24SWRD, non-24-hour sleep-wake rhythm disorder in the blind

6) Sighted Non-24, N24SWRD in the non-blind.

 

I have listed 6 disorders; the usual number is 4. The first 2 on my list are usually combined, as are the last 2.

 

Some of the challenges, for different age groups and degrees of severity, are to:

--Find the causes of the disorders that are not yet explained

--Examine genetics and heritability

--Differentiate teens’ DSWPD as adolescent or persistent type

--Discover why adult DSWPD often precedes the development of Non-24 in sighted people

--Validate the use of light therapy, dark therapy and melatonin, including detailed recommendations for the timing and dosage of each of them

--Find other, more reliable, treatments

--Develop simple tests for determining persistent internal circadian desynchronization in an individual.

 

 

Some of the disorders have been explained, in whole or in part. There is great need for work with, at least, the following groups of patients:

-Adult DSWPS

-Pre-puberty children w/ DSWPS

-Adult sighted N24

-Pre-puberty sighted children w/ Non-24

 

Of these, adults with DSWPD are, of course, the most numerous. Research on that disorder may lead to results of interest for N24, these disorders being closely related.

Voting

1 net vote
1 up votes
0 down votes
Active

Goal 3: Advance Translational Research

Generalizing patient education to address co-morbidities

How do we generalize our educational efforts such that multiple co-morbidities and their self-care can be addressed?

Submitted by (@kdeit1946)

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

Details on the impact of addressing this CQ or CC :

Patients with with many co-morbidities, many times have to weigh the benefits of a particular medication for one issue, with the downside of what it may do to another issue. There needs to be much more education in this area.

Name of idea submitter and other team members who worked on this idea : Karen Deitemeyer, COPD Foundation State Captain Program

Voting

3 net votes
3 up votes
0 down votes
Active

Goal 3: Advance Translational Research

More involvement of patients and patient advocates in the process of research

More involvement of patients and patient advocates in the process of research at the NHLBI should be encouraged.

Submitted by (@nhlbiforumadministrator)

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 : Research Advocacy Committee, American Thoracic Society

Voting

1 net vote
1 up votes
0 down votes
Active

Goal 2: Reduce Human Disease

Expanding Patient Input and Collaboration

NHLBI should incorporate more patient input in the institute’s decision-making process and consider more collaboration with the Patient-Centered Outcomes Research Institute.

Submitted by (@golan0)

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

Voting

2 net votes
2 up votes
0 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
Active

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
Active

Goal 2: Reduce Human Disease

Patient Registries

Researchers at academic institutions, research foundations, and industry are poorly managing clinical data about patients they treat and enroll in clinical trials. A better coordinated patient registry effort related to heart, lung, and blood disease patients would yield long term benefits for clinical research and clinical care improvement.

Submitted by (@skrenrich)

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 : Cystic Fibrosis Foundation

Voting

5 net votes
8 up votes
3 down votes
Active

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 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)?

Submitted by (@hgussin)

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

Voting

9 net votes
12 up votes
3 down votes
Active

Goal 2: Reduce Human Disease

Reducing Patient Delay Times with ACS especially STEMI

The major barrier to further reducing mortality from ACS in particular STEMI remains patient delay. Symptoms are either ignored or misinterpreted and this behavior has not changed despite community education efforts. The advance of social media as well as smartphones and other internet based tools suggests that there is a new opportunity to potentially help change human behavior.

Submitted by (@dayam0)

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

Details on the impact of addressing this CQ or CC :

The current patient delay time from symptom onset to seeking medical care is 2 hours. If we could reduce this to 1 hour we could further reduce ACS especially STEMI related mortality

Feasibility and challenges of addressing this CQ or CC :

The use of social media and smartphones to actively change public behaviors when experiencing potential medical conditions should be possible. Companies like Google and Facebook that have an interest in health could be approach to partner in this effort

Name of idea submitter and other team members who worked on this idea : Mohamud Daya

Voting

0 net votes
2 up votes
2 down votes
Active

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

Voting

13 net votes
16 up votes
3 down votes
Active