Leicester, Leicestershire, Rutland Breathlessness Pathway (University Hospitals of Leicester NHS Trust)

1. Leicester, Leicestershire, Rutland
Breathlessness Pathway
Dr Rachael Evans PhD
Consultant Respiratory Physician
Honorary Senior Lecturer,
Glenfield Hospital, Leicester, UK

2. LLR Breathlessness Pathway
• Overarching aim ‘to streamline and co-ordinate care to achieve early diagnosis and early
treatment for patients suffering from non-acute breathlessness’
• NHS-IQ project - pilot a specialist led cardiorespiratory diagnostic clinic for
breathlessness
• Part of Leicester, Leicestershire, & Rutland (LLR) project to develop a Breathlessness
Pathway across primary, community and secondary care
• Better Care Together Health and Social care LLR – Long Term Conditions workstream
• LiA UHL NHS Trust project to design the pathway
• Patient involvement

3. Developing integrated symptom-based
diagnostic pathways
Assessing the current pathway for
patients with chronic/non-acute breathlessness

4. How do adults with breathlessness currently present to
secondary care? Outpatient survey
All primary care referrals to cardiology and
respiratory outpatients during March 2015:
• 63/174 (36%) were for breathlessness
• 38 had unexplained symptoms prior
to referral
• 35% had ≤1 investigations prior to
referral
Investigations performed prior to
referral:
Respiratory
Cardiology
Both
0
10
20
30
40
50
60
70
80
Investigation
CXR Spirometry BNP Echo Hb ECG CT thorax

5. Duration to diagnosis and treatment
Mean [SD] time:
• to be seen was 13 [8] weeks
• to diagnosis from referral was 16 [7] weeks
• for respiratory physiotherapy was 19 [13] weeks
• to PR was 28 [7] weeks
• There were no inter-speciality referrals

6. How do adults with breathlessness currently present to
secondary care? Admissions unit survey
• 67/156 adult admissions were for breathlessness.
• 33/67 had unexplained symptoms, of which 17 were discharged within 24 hrs
(>75% required only simple investigations interpreted, 70% EWS ≤1).
• Of the 33, 61% required simple investigations only and 50% had an EWS of ≤1 on
arrival.
• The median [IQR] duration of breathlessness was 3 [1 - 14] days.
All admissions to CDU in 96 hours during July 2015

7. Comparison of the diagnoses between the two settings
Diagnoses for adults with unexplained breathlessness presenting to secondary care
OPD Diagnoses (n=38) Frequency Acute CDU Diagnoses (n=33) Frequency
COPD 9 Pneumonia 8
ILD 6 LRTI 4
Asthma 5 AF 3
Dysfunctional Breathing 4 MSK chest pain 3
Bronchiectasis 3 Bronchitis 2
OSA 2 Asthma 2
Bronchitis 2 Other Respiratory 7
Other Respiratory 4 Other Cardiology 4
Other Cardiology 3
*separate heart failure clinic

8. Conclusions
• Simple investigations are not fully utilized prior to OPD referral for breathlessness.
• Nearly a quarter of patients presenting with undifferentiated breathlessness have COPD
• Only 30% had spirometry prior to referral
• Identified need for three different approaches to breathlessness services:
1) a diagnostic pathway for primary care
2) an ambulatory same day service with simple investigations including chest
radiograph, blood tests and electrocardiography readily available with interpretation
3) a diagnostic combined speciality outpatients with earlier appointments
Submitted abstract to ERS 2016

9. Developing a LLR Breathlessness
Pathway

10. Bringing a Leicestershire
team together
County and City GPs
Respiratory
Consultants
Cardiology
Consultants
Public Health
Community providers - LPT
Diagnostics
Therapies (OT/PT)
Cardiology Specialist
Nurses
Exercise Rehabilitation
Specialists
(Community and UHL)
NCSEM - EM
Respiratory Specialist
Nurses
UHL Managers
CCG representatives
PATIENTS
Pharmacists

11. “PHEW!” We designed a Leicestershire
Breathlessness Pathway
• Glenfield Patient Cardio-Respiratory Group
• Presented to 15 members of the group
• Patient volunteers continue to support the project
Preference for
less visits
even if meant
longer
appointments
“Happy to travel
to see the
experts”
Experience of
delayed
diagnosis and
treatment
“I wish I had
been referred
to PR earlier”

12. All pathways to include
lifestyle changes
• Exercise programmes
• Smoking cessation
• Dietary advice
Nijmegen
questionnaire

13. Echo

14. Pilot of a specialist led cardiorespiratory
diagnostic breathlessness clinic

15. Aims (other than initiating the clinic)
• Achieve earlier diagnosis by systematically
assessing the ‘panel of investigations’ for all
patients
• Reduce time to be seen from referral (aim for < 4
weeks)
• Integrate cardiopulmonary exercise tests into the
diagnostic pathway
• Aim for ‘one stop approach’ as far as possible
• Keep number of follow-ups to a minimum
• Reduce need to refer on to the other speciality e.g
cardiology or respiratory
• Reduce waiting time for chest physiotherapy
• Increase referral to exercise programmes
• Improve patient experience
• Estimate how many referrals could have been
avoided if all ‘the panel of investigations’ had been
performed in primary care prior to referral
• Estimate how many needed specialist opinion (but
could have been occurred in the community)
• Estimate how many patients required specialist
tests
• Integrate a MDT discussion between the
cardiologist and respiratory physician at the end of
the clinic and capture any outputs
Overarching aim to improve
quality of care for patients suffering
from non-acute breathlessness

16. Developing the clinical team
The clinic team
Consultant Cardiologist - Dr Will Nicolson
Respiratory Physiotherapist – Ms Shaazia Khatri.
Consultant Respiratory Physician – Dr Rachael Evans
Respiratory physiologists (performing spirometry at
clinic, cardiopulmonary exercise tests, PC20, PFTs)
Integrated Care Clinical Fellow, HEEM, UHL NHS Trust
- Dr Irene Valero-Sánchez
Clinic Co-Ordinator: Kirti Odedra
Healthcare Assistant: Julian Bursnall
Outpatient Nursing Team – Sadie Hall
Secretaries – Julie Spence/Sarah Sayer
CMG managers – Clare Rose/ Sam Leak

17. Clinic process
Implementation
• Started August 2015
• 2- 5pm 1st and 3rd Friday afternoon
• Consultants reviewed referral letters into the
department for patient selectio
• Blood test requested via letter prior to clinic
• Other investigations would be performed
same day as clinic – spirometry, ECG, CXR,
MRC, Nijmegan score, HADS, BMI, Activity Q
• MDT occurred 4.30 – 5pm
Barriers
• Finding a clinic slot
• Admin staff time
• Outpatient nursing staff time
• Clinics were booked on an adhoc basis for 3
months therefore less patients were able to
be seen than if the clinic was a regular
occurrence
• Difficult to maintain a process of getting
patients seen <4 weeks with this adhoc
nature

18. Results
• 54 new cardiorespiratory patients
• 50% male, mean [SD] age 66.6 [15.4] yr, Body Mass
Index 31 [7] kg/m2) were seen over six months
• 25/54 referrals either had no diagnosis specified or
diagnosis was uncertain
• Investigations documented on the GP referral
letter were:
• Hb 26%
• BNP 28%
• ECG 17%
• CXR 54%
• Spirometry 27%
• BMI <2%
• Smoking history 31%
• Echocardiogram 18.5%
1
4%
2
29%
3
36%
4
24%
5
7%
MRC dyspnoea grade
0
5
10
15
20
25
30
35
40
Frequency
Respiratory Cardiology

19. Outcome
– usual OPD pathway vs breathlessness clinic
• % discharged back to GP was higher in the
‘Breathlessness Clinic’ compared to usual
outpatient pathway
• 87% back to GP with max 1 follow up within < 2
months vs 35% within 6 months
• N = 6 were referred to either respiratory
(n=3) or cardiology (n=3) outpatients for
ongoing follow up;
• interstitial lung disease (n=2),
• severe OSAS (n=1),
• primary pulmonary hypertension vs HFpEF (n=1)
• severe valvular heart disease (n=2)
Usual outpatient
pathway
Breathlessness
clinic
P value
Time to be seen 13 [8] 5 [3] <0.001
Time to diagnosis 16 [7] 5 [8] <0.001
Time to physio 19 [13] 1 [1] <0.001
New to follow up ratio 2:10 8:2
DNA % 18% 4%
Breathlessness Clinic
• 48% discharged after single visit
• 39% discharged after 1 follow up
• 2% (n=1) had 2 follow ups
• 9% referred to specialist clinics

20. Outcome …continued
• 16/54 (29.6%) further outpatient referrals were avoided to the other speciality by
having the MDT
• 11% (n=6) mod-severe COPD, n=1 severe bronchiectasis and respiratory failure, referred to
cardiology
• 7.4% (n=4) HFpEF/AF/Valvular heart disease referred to respiratory
• 10 (18.5%) were diagnosed due to systematically having simple investigations for
breathlessness rather than clinician preference
• 18.5% could have been diagnosed in primary care (judged by need for simple
investigations only and no complex co-morbidity)
• Only a third of patients required specialist tests needing a secondary care setting

21. Diagnoses and Investigations
Primary Diagnosis Frequency
Arrhythmia 2
Asthma 8
Bronchiectasis 2
COPD 8
Dysfunctional Breathing 11
HFpEF 6
HFrEF 1
Valvular Heart Disease 2
Interstitial Lung Disease 4
Mixed Heart Disease 1
Obesity 4
Physical Deconditioning 3
Sleep disordered breathing 1
Co-existing Obesity and Physical
deconditioning
20
• Multi-morbidity of breathlessness
0
5
10
15
20
25
30
Frequency
No. of Diagnoses
1 2 3 4 5HADS>9 Anxiety
Depression
7
10

22. Other investigations performed:
0
2
4
6
8
10
12
14
16
Investigations
CPET CTPA Cardiac MRI Echo HRCT thorax 24hr ECG PC20 PFT R heart catheter

23. Patient experience
Outpatient feedback questionnaire - http://www.nhssurveys.org/
• 10 consecutive patients Dec 15 – Jan 16
• Did you have enough time to discuss your health or medical problem with the doctor?
• 10 Yes, definitely
• Did the doctor explain your condition and the reasons for any treatment or action in a way that you could
understand?
• 10 Yes, definitely
• Was the main reason you went to the Outpatients Department dealt with to your satisfaction?
• 10 Yes, completely
• Overall, how would you rate the care you received at this Outpatients Department?
• 10 Excellent
• Would you recommend this clinic to your family and friends?
• 10 Yes, definitely

24. Case history 1
• 63 yr old man -increasing breathlessness over two months
• Ex-smoker and hypertensive.
• ET now only 50yds - had been able to walk miles until May
2015. GP requested urgent appointment
• Weight gain of three stone since being prescribed steroids for
polymyalgia rheumatica.
• swelling of his ankles and orthopnoea. No cough or LRTIs.
• O/E breathless on minimal exertion, SpO2 98% on air, sweaty
and tachycardic 120 (SR). His JVP was visible at 4cm. BMI 47.
Bilateral pitting oedema to knees
• CXR – cardiomegaly
• ΔΔ heart failure (2⁰IHD/HT) - speed of deterioration, risk
factors and clinical examination.
• The cardiologist performed a screening Echo, which
reassuringly showed normal LV function but RV dilatation.
• His spirometry showed severe airflow obstruction compatible
with COPD and restriction due to his obesity
• He hadn’t had the blood test for BNP as he thought he’d have
it at the same time as the clinic – normal
• On direct questioning he was a snorer, with daytime
somnolence, un-refreshing sleep and awoke choking at night.
He was a lorry driver but had been off work because of the
shoulder problem.
• He had a sleep study which confirmed very severe OSAS and
he was started on CPAP within two weeks
• DVLA contacted
• He has since lost 1.5 stone and is attending Pulmonary
Rehabilitation. He has been weaned completely off the
steroids.
Joint approach led to discharge to the sleep clinic
after a single appointment
Usual OPD - referred urgently to the heart failure clinic

25. Case history 2
• 73 yr old female , non-smoker, - symptoms of breathlessness for the last couple of months.
CXR - cardiomegaly and signs of “congestion”. Normal BNP. Diagnosis of possible heart failure.
Referred for an appointment to cardiology clinic.
• Further report of CXR comes back. Radiologist suggests further characterisation of images with
high resolution CT scan (HRCT). Therefore HRCT requested in primary care.
• Referral was reviewed by cardiologist and selected for the breathlessness clinic.
• HRCT recently performed but images not reported. HRCT Images reviewed by respiratory
physician during clinic preparation and radiological diagnosis of interstitial lung disease (ILD)
made
• Patient seen by respiratory physician, eosinophila, high dose steroids started, requests additional
blood tests for further characterisation, refers to the ILD team, who take over for follow up.
• Diagnosis – likely Cryptogenic organising pneumonia
Estimated time to diagnosis on old pathway 6 months
Time to diagnosis and Rx - 1 month due to cardiorespiratory option

26. Case history
Exclude COPD
• Spirometry at work
• Good clinical history for COPD
but spirometry showed
restrictive deficit
• Poor quality spirometry
• Poor interpretation
Asthma
• Good history for asthma - no
therapeutic trial of inhaled
steroid performed

27. Conclusions
• There is a need to increase the utilization of simple tests for the diagnosis of non-acute breathlessness in
primary care
• 18.5% of specialist referrals could have been avoided if these had been employed
• The diagnostic clinic achieved a significantly earlier diagnosis, fewer follow up visits, compared to ‘usual
pathway’ (quality and efficiency improved even without the panel of Ix being performed prior to clinic)
• Earlier physiotherapy was achieved by having a physiotherapist present
• Joint cardiorespiratory working was valuable and avoided 30% of the cohort having inter-speciality referrals
• This was higher than for the ‘usual OPD pathway’ due to the ‘panel of investigations’ being systematically performed
• Secondary care referrals for breathlessness outside of the ‘breathlessness clinic’ should utilise the ‘simple panel of investigations’
• The ‘panel of investigations’ led to a more comprehensive assessment of the causes of breathlessness leading to
multiple co-morbidities being diagnosed
• A joint specialist clinic in the community would have been possible in nearly two-thirds as long as the ‘panel of
investigations’ were available
• Improved stratification of patients referred to secondary care is needed to ensure resource is ‘best used’

28. Further work
• Successful application to supervise an Integrated Care Fellow through Health Education East
Midlands to further this work
• Dr Ire Valero is piloting the implementation of the LLR breathlessness pathway in primary care (utilising the information
from this project)
• The clinic is due to be commissioned from April 2016 – we will find out end of March.
• Utility of cardiopulmonary exercise tests has not been evaluated - ongoing
• Waiting time for the exercise programmes has not been assessed. It took a few months to find out
what community programmes were available and they have different referral forms
• Ongoing evaluation and mapping of exercise services is being performed by the ‘health and innovations’ team of Better
Care Together Long Term Conditions
• A generic exercise rehabilitation programme has been set up at the NCSEM-EM so we will now refer
the majority of new patients there
• We aim to move the clinic to NCSEM-EM
• Dissemination