Identifying Research Priorities about the Diagnosis, Prevention and Treatment of COPD Exacerbations

If you are a UK-based person living with COPD, carer for a person with COPD or a health-care professional we want to hear your views!

What is this survey for?

This project will identify the most important unanswered questions that relate to exacerbations or ‘flare-ups’ of the lung condition called chronic obstructive pulmonary disease (COPD).  We will do this from the point of view of people living with COPD, carers and health-care professionals. The questions will be ordered in priority, to help clinicians and researchers address the most important topics and make a real difference to people affected by COPD.

An initial survey in 2019 was completed by 571 people, resulting in 1,912 suggested questions.  We have now combined similar questions into broader topics, and worked out which topics have already been answered.  There are 51 questions left.  The James Lind Alliance (JLA) has been supporting this process to make sure that all the decisions made were fair and transparent.

How to complete the survey

We now need to assess which of the 51 questions should be given most priority. In order to do this, we are asking you to choose YOUR OWN TOP TEN that you would most like to see answered.

By voting for your top 10 research questions you will be helping us establish a shortlist of the most important topics for future research in COPD.  In the final stages, this shortlist will then be discussed at a workshop to create an overall and final ‘top ten’ list.

Participants in the workshop will be a mix of people affected by COPD, carers, and health professionals that treat people with COPD.  Workshop participants will agree a final top 10 from a shortlist of around 25 to be chosen from this survey.

The easiest way to complete this is to look at the questions first, make a note of your own top-ten, then complete the survey.

Take the survey

 

All 51 questions, please choose your top 10 before completing the survey.

1

What is the best way to tell the start of an exacerbation from day-to day variation in symptoms?

2

Are there different types of exacerbations, and what is the best way to classify exacerbations into different types?

3

What is the best way to tell the difference between an exacerbation and a different cause of changing symptoms in a person with COPD?

4

What is the benefit of taking a sputum (phlegm) sample during an exacerbation of COPD?

5

Which biomarkers can be used to help diagnose a COPD exacerbation and how reliable are they?

(A ‘biomarker’ is a medical test, such as a blood test, scan or breathing test that provides information to the clinical team).

6

Is the best approach to diagnosis of exacerbations to use a COMBINATION of symptoms, biomarkers and physiology?

(A ‘biomarker’ is a medical test, such as a blood test, scan or breathing test that provides information to the clinical team; and ‘physiology’ refers to tests of body function made using measurements, such as lung function or tests on the heart).

7

What is the value of assessing physiology at an exacerbation of COPD?

(‘Physiology’ refers to tests of body function made using measurements, such as lung function or tests on the heart).

8

What is the value of medical imaging at an exacerbation of COPD?

('Imaging' refers to scans or x-rays).

9

If a patient suspects a COPD exacerbation, when should they contact a health-care professional?

10

If a patient suspects a COPD exacerbation, when should they start their own treatment ('rescue pack') for exacerbation?

11

What is the role of nutrition in the prevention and treatment of exacerbations?

12

How does the presence of anaemia affect the diagnosis and treatment of COPD exacerbations?

(‘Anaemia’ is having low numbers of red blood cells).

13

How does the presence of anxiety and depression affect the prevention, diagnosis and treatment of COPD exacerbations?

14

What can prevent exacerbations of COPD?

15

What is the best way to choose the right prevention strategy for a particular person?

16

Does singing prevent or reduce the severity of COPD exacerbations?

17

Why do some exacerbations recur (happen again) following treatment?

18

What can a person with COPD do to reduce the risk of picking up an infection from other people?

19

Does regular exercise reduce the risk of having an exacerbation (and to what level of exercise)?

20

How do the family of medicines called ‘macrolides’ prevent exacerbations?

(‘Macrolides’ are a type of antibiotic, but these medicines have other properties too, such as being anti-inflammatory).

21

What are the risks and benefits of long-term antibiotics to prevent COPD exacerbations, and how should they be best used?

22

What are the risks and benefits of oral and inhaled steroids to prevent COPD exacerbations, and how should they be best used?

23

What are the role of the bacteria that live on and in us (our ‘microbiome’) in determining the risk of exacerbation?

24

Which environmental factors (such as weather, pollution, allergens and temperature) affect the risk of exacerbation and what should I do about it?

25

What are the risks and benefits of oxygen to prevent COPD exacerbations, and how should it be best used?

26

What are the risks and benefits of the family of medicines called ‘bronchodilators’, alone and in combination, used to prevent COPD exacerbations, and how should they be best used?

('Bronchodilators' are medicines designed to relax the muscles in our airways).

27

What is the value of integrated respiratory teams (health-care professionals working across organisations, and/or professions) in preventing COPD exacerbations and COPD admissions?

28

What are the risk factors for having COPD exacerbations?

29

What are the risks and benefits of, and which complementary/alternative medicine approaches prevent COPD exacerbations, and how should they be best used?

30

What are the risks and benefits of the family of medicines called ‘phosphodiesterase inhibitors’ to prevent COPD exacerbations, and how should they be best used?

(A 'phosphodiesterase inhibitor' is a type of medicine used in COPD. The commonest example is aminophylline or theophylline).

31

What are the risks and benefits of the family of medicines called ‘statins’ to prevent COPD exacerbations, and how should they be best used?

('Statins' are used to lower blood cholesterol, but there has been the suggestion that these medicines may have other actions too, for example affecting the immune response).

32

What are the risks and benefits of the family of medicines called ‘monoclonals’ to prevent COPD exacerbations, and how should they be best used?

(‘Monoclonals’ are a group of medicines based on antibodies. They usually have to be given by injection).

33

What are the associations between co-morbidity (other medical conditions) and risk of COPD exacerbations?

34

Which psychological support regimes can be used to prevent exacerbations, in which circumstances, and what are the potential benefits?

35

What is the relationship between loneliness and COPD exacerbations?

36

What is the best way to treat cough during a COPD exacerbation?

37

When should a COPD exacerbation be treated with steroids alone, antibiotics alone or both?

38

What is the value of starting exacerbation treatment as soon as possible?

39

What are the risks and benefits of 'rescue packs' used to prevent COPD exacerbations, and how should they be best used?

40

Which antibiotic regime (drug, dose, length; first line, second line) should be used to treat an exacerbation and what are the potential benefits and side-effects?

(‘First line’ means first choice, and second line means an alternative that could be used if the first one hasn’t worked, or the person isn’t able to take it, for example because they are allergic).

41

Which oral/inhaled steroid regime (drug, dose, length; first line, second line) should be used to treat an exacerbation and what are the potential benefits and side-effects?

(‘First line’ means first choice, and second line means an alternative that could be used if the first one hasn’t worked, or the person isn’t able to take it, for example because they are allergic).

42

Which mucolytic regime (drug, dose, length; first line, second line) should be used to treat an exacerbation and what are the potential benefits and side-effects?

(A 'mucolytic' is a type of medicine used to affect phlegm, generally making it easier to cough up; ‘first line’ means first choice, and second line means an alternative that could be used if the first one hasn’t worked, or the person isn’t able to take it).

43

What is the best way to treat breathlessness during a COPD exacerbation?

44

Which bronchodilator regime (drug, dose, length, and route) should be used to treat an exacerbation and what are the potential benefits and side-effects?

('Bronchodilators' are medicines designed to relax the muscles in our airways).

45

Which airway (sputum / phlegm) clearance regimes should be used to treat an exacerbation and what are the potential benefits and side-effects?

46

Which psychological support regimes should be used to treat an exacerbation, in which circumstances, and what are the potential benefits?

47

What is the optimal combination of treatments at COPD exacerbations and what is the best way to decide this for individual patients?

48

Which palliative care regimes should be used to treat an exacerbation, in which circumstances, and what are the potential benefits?

(‘Palliative care’ is defined by the World Health Organisation as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering).

49

How should patients with a clinical diagnosis of a COPD exacerbation be looked after if there is no ‘official diagnosis’ with spirometry?

50

What factors determine whether someone with a COPD exacerbation can be managed at home or needs admission to hospital?

51

How can recovery from an exacerbation be best assessed and monitored?