COPD: Comparison of Existing Prognostic Tools for 1 Year Mortality and Assessment of Symptom Burden to Facilitate Advance Care Planning
Conditions: Pulmonary Disease, Chronic Obstructive, Pulmonary Disease, Obstructive, Emphysema, Chronic Bronchitis, Chronic Bronchitis With Airways Obstruction, Chronic Bronchitis With Acute Exacerbation
Sponsor: Northumbria Healthcare NHS Foundation Trust

MoSHCOPD: Mortality and symptom burden post hospitalisation with COPD 
Protocol version 2.0 
IRAS Project ID: 244285 
 
2nd January 2019 
 
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COPD: Comparison of existing prognostic tools for 1 year mortality and 
assessment of symptom burden to facilitate Advance Care Planning 
Scientific Abstract: 
Background: Following hospitalisation for an exacerbation of COPD (ECOPD), one year mortality is 
23.2%. Compared to inoperable lung cancer, patients with severe COPD have a greater symptom 
burden but much lower access to palliative care and advance care planning. Improved prognostication 
will support selection for, and use of, these services.   
Aims: To facilitate palliative care and advance care planning in patients surviving hospitalisation for 
ECOPD, we will: 1) compare the performance of prognostic tools for prediction of one year mortality; 
2) assess ease of completion of these tools; 3) assess symptom burden and quality of life over one 
year. 
Methods: In patients with ECOPD surviving to hospital discharge, established prognostic tools and a 
novel tool (from the PEARL derivation cohort n=824) will be compared for prediction of one year 
mortality: a) within the existing PEARL validation cohort of 1,593 patients, and b) prospectively in at 
least 310 patients. Patients will undergo longitudinal assessment of symptom burden and quality of 
life. 
Benefits: This study will identify which prognostic tool performs best for one year mortality outcome 
in patients hospitalised with ECOPD. This should lead to more frequent and appropriate engagement 
with palliative care and advance care planning, and prompt timely discussions with patients about end 
of life planning. 
Lay Summary: 
Chronic Obstructive Pulmonary Disease (COPD) is a common progressive lung disease which causes 
breathlessness and frequent exacerbations. During exacerbations patients become more breathless, 
often requiring hospitalisation. Patients with severe COPD commonly become housebound, lose 
their independence and suffer significant depression and anxiety.  Hospital admissions become 
increasingly common towards end-of-life; however this also means that hospitalisation is a good 
opportunity to identify patients at risk of poor outcome. Such patients, when well-informed, may 
wish to consider alternatives to admission and avoidance of intrusive procedures and treatments. 
Unfortunately, predicting which patients are likely to die in the near future is particularly challenging 
in non-malignant disease. Patients with severe COPD have a higher symptom burden than those with 
incurable lung cancer, yet they are less likely to receive specialist palliative care, or to have engaged 
in advance care planning (where patients discuss and document their wishes regarding their future 
care). To improve provision of palliative care services and ensure patients are given the opportunity 
to make truly informed decisions about their future care, the first step required is accurate 
identification of those who would benefit. 
Well-designed prognostic tools outperform clinician judgement in most settings. We will compare 
the accuracy of one year mortality prediction, and ease of completion, of several clinical tools in 
patients who survive an ECOPD requiring admission. This will initially be performed using data 
collected during previous research (we developed a number of tools now routinely used), then 
prospectively confirmed in a minimum of 310 patients admitted consecutively with an ECOPD.  The 
latter group of patients will be invited to participate in a follow-up study, assessing symptom 
burden, quality of life, and readmissions.  
We anticipate that this project will improve access to palliative care, and help to facilitate well-
informed discussions with patients and their families about their future care. This may include 
whether they would like to be readmitted to hospital or cared for at home, and which offered 
interventions they would be willing to accept in hospital.  This should ensure better symptom control 

MoSHCOPD: Mortality and symptom burden post hospitalisation with COPD 
Protocol version 2.0 
IRAS Project ID: 244285 
 
2nd January 2019 
 
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and quality of life for patients with severe COPD reaching the end of their life, and empower them to 
avoid aggressive interventions if preferred.  This is all a routine part of care for patients with 
terminal cancer but is currently often not afforded to patients with non-cancer conditions. 
Background:  
Exacerbation of COPD (ECOPD) is the second commonest reason for emergency hospital admission in 
the UK.(1) National audits between 2008 and 2014 show a substantial rise in 90-day readmissions (from 
33% to 43%).(2) Among those who survive, 23.2% die within 1 year.(3)  
In severe COPD, there is a huge unmet need for appropriate palliative care and advance care planning. 
Compared to unresectable lung cancer, quality of life (QOL) is worse,(4) and levels of disability, anxiety 
and depression greater.(4) In addition to high symptom burden,(4) frequent hospital admissions and 
invasive interventions at the end of life are common.(4-10) Despite this, advance care planning is rarely 
addressed, largely reflecting the uncertainty of prognosis in COPD; in malignancy deterioration is more 
predictable, and engagement with advance care planning and palliative care services is the norm.(4, 6, 11, 
12)  This uncertainty can lead to reluctance from clinicians to involve palliative care services, or to have 
frank discussions with COPD patients about their future care, to the detriment of their QOL.(13-15) 
Among those patients surviving to discharge, disease-specific risk stratification tools have been 
developed for readmission and death,(3, 16-19) whilst other non-COPD specific tools may be applicable in 
this setting.(20, 21) 
Due to time pressures during hospitalisation,(22) the provision of acute care takes precedence over 
anticipatory planning. Acute, general and respiratory physicians must feel empowered to, and capable 
of, incorporating palliative care and advance care planning into their own practice,(8, 12) and a simple 
prognostic tool should assist with this. Integrating these aspects of care into routine COPD 
management would be supported by patients.(6, 8, 23, 24) 
Aims:  
1. 
Determine which clinical tool is most appropriate to identify patients at risk of death within 
one year, in terms of performance and ease of completion, following hospitalisation with 
ECOPD. 
2. 
Patients surviving beyond one year may have palliative care needs. We will assess quality of 
life, symptom burden and utilisation of healthcare services in this patient group over one year, 
and compare to risk groups within the prognostic tool.   
 
There is a pressing need to more accurately identify which patients with ECOPD surviving to discharge 
are most at risk of adverse outcome, and likely to benefit from advance care planning and palliative 
care. The findings will be presented nationally and published in an international journal.  The project is 
supervised by two consultant respiratory physicians and a consultant in palliative medicine, and will be 
primarily conducted by a respiratory palliative care fellow.   
Methods:   
Comparison of prognostic tools:  
The PEARL score predicts readmission or death within 90 days of discharge following ECOPD, and was 
developed by the lead supervisor’s research team.(3) Within the PEARL derivation cohort (2 hospitals, 
824 patients), they have developed a novel tool to predict one year survival. The performance of this 
novel tool and existing COPD prognostic tools (BODEX,(17) PEARL,(3) COPD PIG,(20) CODEX,(16) ADO,(19) 
DOSE,(18) the non COPD specific SPICT(21) and the new BARC(25)) will be compared in the PEARL 
validation cohort (6 hospitals, 1,593 patients). 
Performance of all tools will also be further prospectively assessed in a minimum of 310 patients across 
two sites. The COPD-PIG is intended to only be scored in patients who the clinician “would not be 
surprised” if they died within one year; the performance of this tool cannot be fully assessed 

MoSHCOPD: Mortality and symptom burden post hospitalisation with COPD 
Protocol version 2.0 
IRAS Project ID: 244285 
 
2nd January 2019 
 
3 
retrospectively. Prospective validation will also allow an assessment of the ease of data collection; this 
is not available for the existing PEARL cohort but is a key consideration in selection of the final tool to 
ensure it is appropriate for widespread use on hospital wards. Consecutive, unique patients admitted 
to Northumbria Healthcare NHS Foundation Trust and Newcastle Upon Tyne Hospitals NHS Foundation 
Trust with ECOPD will be identified. Demographic and clinical indices, including the components of the 
nine prognostic tools, will be collected. Caldicott and Research and Ethics Committee approval are in 
place. Hospital readmissions, utilisation of other healthcare services such as the local palliative care 
teams and Hospice and survival will be assessed over one year. In common with similar studies,(3, 26-29) 
this validation study will be non-consenting. 
Patients identified as high-risk by the selected tool who survive beyond one year may still warrant 
palliative care input if their symptom burden is high. The patients enrolled in the validation study will 
be invited to participate in a consenting longitudinal outcomes study, aiming for at least 50% 
participation. Symptom burden and functional status will be assessed using the St George’s Respiratory 
Questionnaire (SGRQ),(30) Hospital Anxiety and Depression Score (HADS),(31) Australian modified 
Karnofsky Score (AKPS),(32) eMRCD score,(33) and modified Borg scale at baseline,(34) and 1, 3, 6 and 12 
months. The intention is for the baseline and 3 month assessments to be conducted via face to face 
meetings, and the additional 1, 6 and 12 month assessments to be conducted over the phone; 
however, in order to maximise the number of participants we will be flexible with home/hospital visits 
versus telephone interviews according to patient preference. This data will be used both to calculate 
the relationship between symptom burden and death, and to identify the characteristics of patients 
who are especially symptomatic. 
Inclusion and Exclusion Criteria:  
All patients consecutively admitted with ECOPD will be screened.  
Inclusion Criteria:  
1. Age 35 years or older.  
2. Smoking history greater than or equal to 10 pack years.  
3. Obstructive spirometry (FEV1/FVC < 0.7).  
4. ECOPD primary diagnosis.  
5. Survival to discharge. 
Exclusion Criteria:  
1. Previous inclusion in the study.  
2. Malignant neoplasm or other pathology likely to limit survival to less than 1 year. 
3. For the longitudinal study only, inability to give informed consent. 
Statistical analysis: 
The primary outcome of interest is prediction of one year mortality. Assuming a one year mortality 
rate of 23.2%,(PEARL)(3) an area under the receiver operating characteristic (AUROC) curve of 0.70, 
with a standard error for the AUROC curve of 4%, a minimum sample size of 310 subjects is required 
(validation cohort).   
The characteristics of the cohort will be summarised using standard descriptive statistics appropriate 
to the level and distribution of the data. Groups will be compared (including by mortality outcome) 
using standard tests of statistical inference (e.g. t-test, Mann-Whitney U test, Fishers exact test). The 
performance of candidate prognostic tools will be compared by 1) assessing the positive and negative 
predictive value within the high-risk groups; and 2) AUROC curve analysis, with performance compared 
using the method of DeLong et al. Where data imputation is required, this will be done using multiple 
imputation methods. Statistical significance will be set at 5% throughout. The statistical analysis plan 
will be finalised prior to end of recruitment to avoid potential bias. 
 

MoSHCOPD: Mortality and symptom burden post hospitalisation with COPD 
Protocol version 2.0 
IRAS Project ID: 244285 
 
2nd January 2019 
 
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Outcome Measures: 
 
Validation Study: 
Primary outcome: 
Positive predictive value and sensitivity of the prognostic tools listed for prediction of one year 
mortality.* 
 
Secondary Outcomes: 
1. Ease of completion of prognostic tools assessed by: a) Likert scale; b) missing data. 
2. Area under the receiver operating characteristic curve for each prognostic tool. 
3. Negative predictive value of the prognostic tools for prediction of one year mortality. 
4. Hospital readmission rates at 30, 90 and 365 days. 
5. Proportion of patients on the palliative care register and relation to mortality. 
6. Utilisation of palliative care services: hospice; community palliative care team. 
7. Inter-observer agreement on scoring.  
 
*This is an exploratory study. The optimal tool to identify patients for advance care planning needs 
to offer high PPV (i.e. the substantial majority of those identified at high risk of dying should not 
survive beyond one year) and reasonably high sensitivity (i.e. most deaths within one year should be 
identified). Ease of completion must also be considered as this will strongly influence engagement. 
Longitudinal cohort: 
In the whole cohort and individual risk groups within the prognostic tools, assess: 
1. Baseline SGRQ, HADS, modified BORG, AKPS. 
2. Mean change in SGRQ, HADS, modified BORG, AKPS compared to MCID. 
3. Duration SGRQ, HADS, modified BORG, AKPS maintained above baseline. 
4. Relation between clinically significant anxiety and depression on discharge and survival, QoL, 
functional status and readmissions.  
5. Best prognostic tool to predict poor QoL and/or death within one year, as per positive 
predictive value and sensitivity. 
 
Patients in a high mortality risk group identified for advance care planning who do not die are not 
“false positives” if they have a high symptom burden. The proportion of patients with high symptom 
burden not identified is also clinically relevant. 
Ethical Considerations: 
To validate a meaningful predictive tool it is essential that patients at the extremes of mortality risk 
are not selectively excluded. The most unwell patients would be unlikely to be able to consent, 
introducing a significant selection bias were they to be excluded. In common with previous 
prognostic tools developed by this group and others,(3, 26-29) the validation study will not require 
individual patient consent.  All included indices are routinely available and participation will not 
influence normal clinical care. Mortality and readmission data is tracked electronically in all patients. 
All records will be anonymised.  
All patients surviving to discharge will be invited to partake in a follow up study assessing patient 
reported QOL. Participation in this part of the study will require written informed patient consent. 
IRAS approval is in place for the existing cohort (REC: 08/H0905/88 & 12/NE/0379) and for the 
prospective validation and longitudinal cohorts (REC: 18/NE/0226).  
Data Handling: 
Caldicott and Research and Ethics Committee approval are in place (REC: 18/NE/0226). Patients in all 
arms of the study will be identified by the usual care team. Patients must be identifiable to follow up 

MoSHCOPD: Mortality and symptom burden post hospitalisation with COPD 
Protocol version 2.0 
IRAS Project ID: 244285 
 
2nd January 2019 
 
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data queries or insert readmission data. Clinical data will be kept on a password protected server, on a 
secure database with no patient identifiable information; a separate secure database will contain 
patients’ identifiable information but no clinical details, with ID codes to link patients to their clinical 
data. Patients' notes will only be reviewed in usual clinical areas or the office of the research fellow. 
Case Report Forms will be kept in a locked filing cabinet in a locked office accessible by research staff 
only. Access to patient identifying information will be via trust servers only. Staff will all be NHS 
employees. 
Research Timetable and Management: 
Ethical approval is in place (REC: 18/NE/0226).  Data collection for the prospective cohort is 
expected to begin in January 2019.  As the prospective prognostic study will be non-consenting, 
recruiting 310 patients is expected to be fully achieved by summer 2019.  
Prof Stephen Bourke will act as chief investigator. He, Dr Katie Frew and Dr Carlos Echevarria will co-
supervise the Respiratory Palliative Care Fellow Dr Sarah Gillespie. William Keith Gray undertook the 
power calculation and will provide on-going statistical support. Financial management, study 
sponsorship and data monitoring will be provided by Northumbria Healthcare NHS Foundation Trust 
Medicine department for the first year and Education department for the continuation of the 
project. 
Benefits: 
This study will identify which prognostic tool is most appropriate for use in patients hospitalised with 
ECOPD for 1 year mortality outcome, balancing performance with ease of completion.  
Reliable prognostication in ECOPD, based on objective criteria should lead to more frequent and 
appropriate engagement with palliative care and advance care planning. Timely discussions about end 
of life planning will be facilitated. Patients will ultimately benefit from informed discussions about their 
future care, and avoiding future hospital admission when no longer appropriate to their condition and 
wishes. Such practice is commonplace in incurable cancer, but hitherto often denied to patients with 
end stage COPD, to their detriment.(4, 6)  
Dissemination of results: 
The findings will be disseminated to a broad regional, national and international audience, including 
respiratory specialists, general physicians and palliative medicine physicians, through presentations 
at local, national and international conferences, and publication in high ranking, peer-reviewed, 
journals.  
Locally, we will keep patients, carers, primary and secondary care clinicians, healthcare managers, 
commissioners and neighbouring healthcare providers informed by publications in existing 
newsletters and presentations at local and regional meetings, conducted within both NHS 
organisations and the University.  
The Chief Investigator (CI) is Chair of the British Thoracic Society COPD Speciality Advisory Group 
(SAG), which will aid dissemination of the results.  
This is part of a very successful COPD research programme led by the CI, which includes 
development of the DECAF and PEARL prognostic scores,(3, 26, 27) with several publications in Thorax 
and two international prizes recognising the importance and impact of this work.(33, 35-37) The latest 
UK National COPD Audit report recommends that DECAF should be scored in all patients admitted 
with ECOPD.(2) We will be aiming for similar success in the dissemination and clinical implementation 
of the results of the proposed study. 

MoSHCOPD: Mortality and symptom burden post hospitalisation with COPD 
Protocol version 2.0 
IRAS Project ID: 244285 
 
2nd January 2019 
 
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Research Team: 
Prof Stephen Bourke, MBBCh (hons), PhD, FRCP. Consultant Respiratory Physician and Professor of 
Respiratory Medicine. 
Contact: North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, NE29 8NH. 
Stephen.bourke@nhct.nhs.uk  
Role: Chief investigator, trial design and supervision, data analysis and interpretation.  
Relevant Expertise: Conception, design and delivery of the programme of research leading to 
development of the “DECAF” prognostic score, including derivation, external and internal validation 
and on-going implementation studies.(26, 27) The latest National UK COPD Audit Report (Who Cares 
Matters; Feb 2015) recommends that the DECAF score should be performed in all patients admitted 
with AECOPD to inform clinical management.(2) He was also CI on the PEARL derivation and 
validation study, developing the PEARL tool for 90 day mortality and readmission following 
admission with ECOPD.(3)  Stephen is currently Chair of the British Thoracic Society COPD Speciality 
Advisory Group.   
 
Dr Katie Frew, MBChB, MRCP, PhD. Consultant in Palliative Medicine 
Contact: North Tyneside General Hospital, Rake Lane North Shields, Tyne and Wear, NE29 8NH. 
Katie.Frew@nhct.nhs.uk 
Role: Co-investigator, input into trial design and supervision, data analysis and interpretation. 
Relevant Expertise: During her PhD studies, Katie conducted qualitative research into the use of 
sedation in palliative care.(38-40) She currently leads Northumbria NHS Trusts’ hospital palliative care 
team, providing palliative care to all appropriate inpatients regardless of underlying diagnosis.   
 
Dr Carlos Echevarria, MBBS, MRCP, PGDip, PhD.  Consultant Respiratory Physician 
Contact: Dept of Respiratory Medicine, Level 6, Leazes Wing, Royal Victoria Infirmary, Queen Victoria 
Road, Newcastle Upon Tyne, NE1 4LP. Carlos.echevarria@nuth.nhs.uk 
Role: Co-investigator, input into trial design and supervision, data analysis and interpretation. 
Relevant Expertise: Carlos was the principal investigator in the DECAF validation and PEARL studies 
during his PhD,(3, 27) and as such has an in-depth understanding of the issues involved in this project. 
 
Dr Sarah Gillespie, BMSc (Hons), MBChB, MRCP.  Respiratory Palliative Care Fellow 
Contact: North Tyneside General Hospital, Rake Lane North Shields, Tyne and Wear, NE29 8NH. 
Sarah.gillespie@nhct.nhs.uk 
Role: PI on the study, data collection, data analysis and interpretation 
Relevant Expertise: Sarah is a junior doctor with 14 months pre-specialist respiratory and 4 months 
pre-specialist palliative care experience, who intends to pursue a career in palliative medicine.  She 
strongly feels that palliative care should be available to all who need it and is delivering this research to 
help further the evidence base in this area. 
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2017. 

MoSHCOPD: Mortality and symptom burden post hospitalisation with COPD 
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IRAS Project ID: 244285 
 
2nd January 2019 
 
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