Using our patient passport to assess experiences of COPD treatment and support

Read or download the findings from our COPD Patient Passport.

COPD patients report variation in the services and support they receive. This has been reflected in the Respiratory Atlas of Variation1 and the current COPD Audit2.

National Institute for Clinical Excellence (NICE) guidance on COPD is clear on optimum care for patients3 but the levers to implement this are weak. The range of treatments and services may also be confusing for patients.

“I would love to have something in my hand when I go see the doctor to say I filled this in with the BLF and this is what I want to talk to you about.”

Our approach

In 2012, the UK’s northwest respiratory team piloted a patient passport describing seven steps to COPD care that were based on current guidelines and quality standards. We worked with PCRS-UK to relaunch the passport both as printed information and a digital tool, that provides a personalised report for patients to discuss with a health care professional.

The passport has three objectives:

  • inform patients of care that they should expect;
  • provide a discussion tool to use during consultations;
  • develop a picture of patient experience.

The passport was redeveloped through a review of the evidence, consultation with members of PCRS-UK and consultation with members of our Breathe Easy support groups.

The printed passport was distributed to every GP practice in the UK and the digital tool was promoted widely online through the BLF website, other websites and social media.

Results

Download this report as a PDF (1.21MB)

As of the end of 2015, 9,336 people had completed the digital tool. Initial results show the following percentages responding yes to each question:

    Yes % Count
Q1 My diagnosis of COPD was confirmed with a lung function test (spirometry) 81 7578
Q2 I understand my COPD and my health care professional has explained where to find information, advice and emotional support 43 4039
Q3 I am supported to manage my care and I have agreed and been given a copy of my self-management plan 26 2383
Q4 I have contacted my GP to get a free flu vaccination by November each year. I have also had the one-off pneumonia jab 53 7102
Q5 If I smoke, I am offered support and treatment to stop every time I meet with a health care professional 66 2316
Q6 I know the importance of keeping active and eating well 82 7613
Q7 I have had a referral to pulmonary rehabilitation 37 3473
Q8 I have received advice about ongoing exercise and nutrition 41 3846
Q9 I know what all my medicines are for and when to take them 77 7233
Q10 My health care professional reviews how I use my inhaler every time I meet with them 48 4486
Q11 I can spot the signs of a flare-up - this is sometimes called an exacerbation 52 4884
Q12 If I have a flare-up, I know who to contact and what medicines to take 53 4982
Q13 I see my nurse or doctor at least once a year to review my health, care and treatment, and to discuss all the points mentioned previously 74 6919

Of the respondents, 3,073 provided a postcode. Although the numbers were too small to provide an analysis at CCG or health board level, at a regional or nation level the results were generally consistent:

  Q1

Yes %

Q2

Yes %

Q3

Yes %

Q4

Yes %

Q5

Yes %

Q6

Yes %

Q7

Yes %

Q8

Yes %

Q9

Yes %

Q10

Yes %

Q11

Yes %

Q12

Yes %

Q13

Yes %

Total per region
Scotland 86 38 26 54 57 85 39 39 82 45 50 54 77 221
Northern Ireland 83 60 56 72 84 84 50 59 88 62 56 72 87 82
Wales 81 32 14 53 67 88 38 36 81 46 55 53 73 166
England 86 44 24 55 68 82 41 41 82 49 54 55 76 2604
London and SE 85 45 26 56 71 81 45 44 84 47 54 56 75 1124
South West 84 46 22 57 76 86 38 41 81 54 56 57 76 329
Midlands 91 44 25 54 60 83 41 39 78 44 57 54 73 380
North East 87 44 20 54 67 84 36 42 84 53 55 54 81 408
North West 84 41 21 57 66 80 39 33 82 52 51 57 70 363
Not given 79 43 26 52 65 81 35 41 75 48 51 52 73 6263

Discussion

While this is clearly a self-selecting group of people with COPD and not necessarily a representative sample, there is a variation in their reported access to the best standards of treatment and care.

The highest reported was for respondents knowing the importance of keeping active and eating well at 82%, followed by diagnosis being confirmed by a lung function test at 81% and three quarters reported receiving an annual COPD review. Only 26% of respondents reported being supported to manage their care through a self-management plan and only 37% being referred to pulmonary rehabilitation.

This demonstrates that although some patients are receiving the right care, there is significant room for improvement in the treatment and support that COPD patients receive across the UK.

We're now carrying out qualitative research on the use and impact of the COPD passport and in the future we plan to promote the passport to CCGs / health boards as a tool to use to help in reviewing local respiratory services.

Download this report as a PDF (1.21MB)

Access the COPD Patient Passport

References:

  1. Respiratory Atlas of Variation, Department of Health 2012
  2. COPD – Who cares matters – National Clinical Audit report 2015, HQIP
  3. NICE Guidelines CG101, 2010