TABLE 1

Description of all 23 included studies

First author [ref.], study locationIntervention typeStudy population sample sizeAims of studyOutcomes measuredMethod of data collection used to assess outcomes
Ahmadi [5], SwedenRetrospectivePatients dying with oxygen- dependent ILD versus lung cancer, 285 patients with ILD versus 10 822 patients with lung cancerTo compare prevalence of symptoms and treatments between two groupsPhysical:
Dyspnoea
GI symptoms (nausea)
Pain
Mental:
Anxiety
Cognitive function (confusion)
ACP:
Expected versus unexpected death
GOC discussions
LOD
Specialist PC (consultation)		SRPC EOL Questionnaire



SRPC EOL Questionnaire



SRPC EOL Questionnaire
Akhtar [13], UKProspectiveIPF patients who attended ILD clinic
(n=118)		Determine prevalence of depressive symptomsMental:
Depression		Wakefield-SADI
Archibald [14], CanadaRetrospectiveILD patients seen in MDC clinic (n=92)Explore effects of PC bundle on LODPhysical:
Dyspnoea
Other (cough)
Social:
Social isolation
ACP:
Specialist PC
ACP activities
LOD		mMRC


SDI

Retrospective data
Bajwah [15], UKRetrospectivePIF-ILD in two London ILD centres (n=45)To assess PC needs, use of PC treatments, and whether EOL preferences were documented and achievedPhysical:
Dyspnoea
Fatigue
GI symptoms (dyspepsia, dysphagia and diarrhoea)
Pain
Sleep disturbance
Other (cough, weight loss, chest pain, polyuria/ polydipsia and headache)
Mental:
Depression/anxiety
ACP:
LOC (preferred)
LOD (preferred and actual)
Specialist PC		Retrospective data









Retrospective data

Retrospective data
Bajwah [16], UKRCT53 patients with advanced fibrotic ILD and their carers (26 patients randomised to intervention in 4 weeks, 27 later randomised to intervention)Impact of case conference intervention delivered in home on PC concerns of patients and their carersHRQoL:
Patient QoL
Physical:
Dyspnoea
Fatigue
Physical function
Sleep disturbance
Other (cough)
Mental:
Anxiety
Depression
ACP:
LOC (preferred)
LOD (preferred)		KB-ILD
SGRQ
D12 Scale
MRC
POS



HADS


Retrospective data
Barratt [17], UKRetrospective72 patients with PIF-ILD (46 patients under care of MDT and 26 patients pre-MDT care)To assess effectiveness of multi-disciplinary team meeting on patients’ PC needsACP:
ACP activities (CPR discussions)
Specialist PC		Retrospective data
Brown [18], USASecondary analysis of cluster RCT829 patients with chronic lung disease (COPD, ILD) and metastatic cancer (79 patients with ILD, 592 patients with COPD, 158 patients with metastatic cancer)To explore differences in receipt of PC among patients with chronic lung disease who die in ICUs compared with cancer patientsPhysical:
Pain (pain assessment prior to death)
ACP:
ACP activities (presence of advance directive, presence of DNR, avoidance of CPR)
GOC discussions (prognosis)
Mechanical support (withdrawal of life-sustaining measures)
Specialist PC		Retrospective data


Retrospective data
Higginson [19], UKRCT105 adults with refractory breathlessness and advanced disease (cancer, COPD, CHF, ILD, MND) (53 patients received breathlessness support service and 52 patients received usual care)To assess effectiveness of early PC with respiratory services for patients with advanced disease and refractory breathlessnessHRQoL:
(At 6 weeks)


Physical:
Dyspnoea (patient reported breathlessness mastery)
Fatigue
Physical function
Mental:
Anxiety
Depression
Social:
Other (receipt of health, voluntary or social care services)		CRQ
EQ-5D
EQ-5D-HRQOL-VAS
POS
CRQ
LCADL
NRS


CRQ
HADS

CSRI
Kalluri [20], CanadaRetrospective32 deceased IPF patients before and after MDC model (22 patients in MDC care and 10 in non-MDC care)MDC model's association with acute care utilisation in last year of life and LODACP:
LOC (preferred)
LOD (preferred and actual)		Retrospective data
Koyauchi [21], JapanRetrospective84 ILD patients with DNI (54 patients on HFNC and 30 patients on NPPV)To assess efficacy and tolerability of HFNCPhysical:
Dyspnoea
Social:
Ability to participate in social roles and activities (communication ability with family/ caregivers at the EOL)		STAS-J

Retrospective data
Liang [22], USARetrospectiveTo describe characteristics of IPF patients referred to specialty lung centre (n=106)To describe characteristics of these patients who experienced ICU admission, including frequency and timing of referral to PCACP:
Specialist PC (% referred to PC before and during admission)		Retrospective data
Lindell [23], USARetrospectiveTo describe events prior to death in IPF patients managed at specialty centre (n=404)To describe time course of events prior to death with a focus on location of death and timing of PC referralACP:
LOD
Specialist PC (% referred and timing of referral)		Retrospective data
Matsunuma [7], JapanRetrospective82 patients with ILD and lung cancer (23 patients with ILD and 59 patients with lung cancer)To evaluate signs, symptoms, and treatment before deathPhysical:
Dyspnoea
Fatigue
Pain
Sleep disturbance (insomnia)
Other (cough, sputum, anorexia)
Mental:
Cognitive function (loss of consciousness and delirium)
ACP:
ACP activities (advance directive)
Mechanical support (intubation)		Retrospective data







Retrospective data




Retrospective data
Rajala [24], FinlandRetrospectiveDeceased IPF patients in IPF cohort study (n=59)To describe treatment practices, decision-making and symptoms during EOL carePhysical:
Dyspnoea
GI symptoms (nausea and constipation)
Pain
Other (cough)
Mental:
Anxiety/depression
Cognitive function (delirium)
ACP:
ACP activities (DNR orders)
GOC discussions (EOL discussions)
LOD		Retrospective data





Retrospective data


Retrospective data
Rajala [25], FinlandCross-sectionalIPF patients (n=252)Primary aim: to investigate HRQoL and symptoms Secondary aim: to identify PC needs by studying relationship between mMRC, HRQoL and symptomsHRQoL
physical:
Dyspnoea
Energy
Fatigue
GI symptoms (loss of appetite, nausea and constipation)
Pain
Physical function
Sleep disturbance (insomnia)
Other (cough and dry mouth)
Mental:
Anxiety
Depression
Social:
Ability to participate in social roles and activities (social functioning)		RAND-36
mMRC
mESAS
RAND-36










mESAS
RAND-36

RAND-36
Rajala [26], FinlandRetrospectiveDeceased IPF patients (n=92)To evaluate IPF patients' symptoms and HRQoL in last 2 years of lifeHRQoL
physical:
Dyspnoea
Fatigue
GI symptoms (loss of appetite)
Pain
Sleep disturbance (insomnia)
Other (cough and dry mouth)
Mental:
Anxiety
Depression
Social:
Social function
ACP:
LOD		RAND-36
mMRC
mESAS
NRS
RAND-36






mESAS
NRS
RAND-36
RAND-36

Retrospective data
Reilly [27], UKSecondary analysis of cross-sectional88 COPD, ILD and cancer patients with refractory breathlessness (53 patients with COPD, 17 patients with ILD, 18 patients with cancer)To assess properties of LCADL in patients with refractory breathlessness due to advanced diseaseHRQoL
Physical:
Dyspnoea
Other (other symptoms)
Mental:
Anxiety
Depression
Social:
Ability to participate in social roles and activities		CRQ
LCADL
NRS
POS
POS-S
HADS


LCADL
Rush [28], CanadaRetrospectiveMechanically ventilated IPF patients (3166)To examine the use of PC in mechanically ventilated IPF patientsACP:
ACP activities (DNR status)
Mechanical support (ventilation)
Specialist PC		Retrospective data
Smallwood [29], AustraliaRetrospectivePatients with fibrotic ILD (n=67)To examine care at terminal hospital admission and the past 2 years of lifePhysical:
Dyspnoea
ACP:
ACP activities (including code status)
Mechanical support
Specialist PC		mMRC

Retrospective data
Stewart [30], UKCross-sectional243 patients with IPF (140 patients without disease progression and 103 patients with disease progression)To determine if patient response to a palliative assessment survey could predict disease progression or deathPhysical:
ADL
Dyspnoea
Fatigue
GI symptoms (loss of appetite)
Other (restless, agitated)		SPARC EOL Questionnaire
Takeyasu [31] JapanRetrospectiveAcute exacerbation of end-stage interstitial pneumonia (n=22)To evaluate the efficacy and safety of continuous morphine infusionPhysical:
Dyspnoea		Subjective clinical effectiveness rating
Wysham [32], USARetrospective152 patients with lung cancer and 86 patients with CLD (71 patients with COPD and 15 patients with pulmonary fibrosis)To compare symptoms burden of CLD with that of lung cancer at time of initial PC consultHRQoL


Physical:
Dyspnoea
Fatigue
GI symptoms (anorexia, nausea, constipation and dysphagia)
Pain
Sleep disturbance (insomnia)
Mental:
Anxiety
Depression
ACP:
ACP activities (DNR order, living will, surrogate)
Specialist PC (location of consult)		A single 11-point general QOL item from the McGill QOL Questionnaire
MSDS
PPS







MSDS


Retrospective data
Zou [33], USARetrospectiveIPF (n=112)To describe factors associated with PC referral and impact on mortality and LODACP:
LOD
Specialist PC		Retrospective data

ILD: interstitial lung disease; GI: gastrointestinal; ACP: advance care planning; GOC: goals of care; LOD: location of death; PC: palliative care; SRPC: Swedish Register of Palliative Care; EOL: end of life; IPF: idiopathic pulmonary fibrosis; Wakefield-SADI: Wakefield Self-Assessment Depression Inventory; MDC: multidisciplinary care; mMRC: modified Medical Research Council Dyspnoea Scale; SDI: social deprivation index; PIF-ILD: progressive idiopathic fibrotic ILD; LOC: location of care; RCT: randomised controlled trial; HRQoL: health-related quality of life; QoL: quality of life; KB-ILD: Kings Brief ILD Questionnaire; SGRQ: St George's Respiratory Questionnaire; MRC: Medical Research Council Dyspnoea Scale; POS: Palliative Care Outcome Scale; HADS: Hospital Anxiety and Depression Scale; MDT: multidisciplinary team; CPR: cardiopulmonary resuscitation; ICU: intensive care unit; DNR: do not resuscitate; CHF: congestive heart failure; MND: motor neurone disease; CRQ: Chronic Respiratory Disease Questionnaire; LCADL: London Chest Activity of Daily Living; NRS: numeric rating scale; CSRI: Client Services Receipt Inventory; DNI: do not intubate; HFNC: high flow nasal cannula; NPPV: noninvasive positive pressure ventilation; STAS-J: Japanese version of the Support Team Assessment Schedule; mESAS: modified Edmonton symptom assessment; POS-S: Palliative Care Outcome Scale-Symptoms; ADL: activities of daily living; SPARC: modified Sheffield Profile for Assessment and Referral to Care; CLD: chronic lung disease; MSDS: McCorkle Symptom Distress Scale; PPS: palliative performance scale.