Leicester, Leicestershire, Rutland Breathlessness

Pathway Dr Rachael Evans PhD

Consultant Respiratory PhysicianHonorary Senior Lecturer,

Glenfield Hospital, Leicester, UK

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

Developing integrated symptom-based diagnostic pathwaysAssessing the current pathway for patients with chronic/non-acute breathlessness

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:

RespiratoryCardiologyBoth

Investigation0

10

20

30

40

50

60

70

80 CXR Spirometry BNP Echo Hb ECG CT thorax

Duration to diagnosis and treatmentMean [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

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

Comparison of the diagnoses between the two settings

Diagnoses for adults with unexplained breathlessness presenting to secondary careOPD Diagnoses (n=38) Frequency Acute CDU Diagnoses (n=33) FrequencyCOPD 9 Pneumonia 8ILD 6 LRTI 4Asthma 5 AF 3Dysfunctional Breathing 4 MSK chest pain 3Bronchiectasis 3 Bronchitis 2OSA 2 Asthma 2Bronchitis 2 Other Respiratory 7Other Respiratory 4 Other Cardiology 4Other Cardiology 3

*separate heart failure clinic

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

Developing a LLR Breathlessness Pathway

Bringing a Leicestershire team together

County and City GPs

RespiratoryConsultants

Cardiology Consultants

Public Health

Community providers - LPTDiagnostics

Therapies (OT/PT)

Cardiology SpecialistNurses

Exercise Rehabilitation Specialists

(Community and UHL)

NCSEM - EMRespiratory Specialist

Nurses

UHL Managers

CCG representatives

PATIENTS

Pharmacists

“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”

All pathways to includelifestyle changes• Exercise programmes• Smoking cessation• Dietary advice

Nijmegenquestionnaire

Echo

Pilot of a specialist led cardiorespiratory diagnostic breathlessness clinic

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 sufferingfrom non-acute breathlessness

Developing the clinical teamThe 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

Clinic processImplementation

• 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

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%

14%

229%

336%

424%

57%

MRC dyspnoea grade

Frequency0

5

10

15

20

25

30

35

40Respiratory Cardiology

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 outpatientpathway

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

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

Diagnoses and InvestigationsPrimary Diagnosis FrequencyArrhythmia 2Asthma 8Bronchiectasis 2COPD 8Dysfunctional Breathing 11HFpEF 6HFrEF 1

Valvular Heart Disease 2Interstitial Lung Disease 4Mixed Heart Disease 1Obesity 4Physical Deconditioning 3Sleep disordered breathing 1Co-existing Obesity and Physical deconditioning

20

• Multi-morbidity of breathlessness

Frequency0

5

10

15

20

25

30 No. of Diagnoses

1 2 3 4 5HADS>9 Anxiety Depression

7 10

Other investigations performed:

Investigations0

2

4

6

8

10

12

14

16

CPET CTPA Cardiac MRI Echo HRCT thorax 24hr ECG PC20 PFT R heart catheter

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

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

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

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

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’

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