Palliative care outcome measures in ILD

Name of instrumentDescriptionNumber of itemsDomains assessed with instrumentPopulation in which validated
SRPC EOL Questionnaire [5]National quality register of the care of patients with ILD collected through an EOL questionnaire completed retrospectively by a care provider within a week of a patient's deathN/APhysical
Wakefield-SADI [13]Screening tool for major depression12 items on symptoms of depressionMental healthGeneral populations
MRC [16, 35]Dyspnoea scale used to quantify disability associated with breathlessness, with higher scores indicating greater impairment5 items on impact of breathlessness on individual from a grade 1 to 5Physical healthRespiratory diseases, particularly COPD
mMRC [35]Similar to original MRC but with breathlessness scales ranging from grade 0 to 45 items on impact of breathlessness on individual from a grade 0 to 4Physical healthRespiratory diseases, particularly COPD
SDI [36]Factor score based on Canadian census data to reflect the deprivation of relationships among individuals in the family, the workplace and the communityN/ASocial healthN/A
KB-ILD [37]Self-reported, ILD-specific, HRQoL questionnaire15 items on psychological, breathlessness and activities, and chest symptomsHRQoLILD
SGRQ [16, 38, 39]Measures impact on overall health, daily life, and perceived well-being, with higher scores indicating greater disability50 items on symptoms and activities and impactsHRQoLDesigned for obstructive airway disease
Also found to be valid in restrictive lung disease with modified version SGRQ specific for IPF (SGRQ-I) validated in IPF
D12 Scale [39]Provides overall score for breathlessness severity12 physical and affective items on a scale of none (0), mild (1), moderate (2), severe (3)Physical healthN/A
POS [40]Group of tools used to measure PC needs of patients and their families10 items on physical symptoms, emotional, psychological and spiritual needs, and provision of information and supportHRQoL
Physical health
Wide spectrum of cancer and non-cancer diseases
POS-S [40, 41]POS version specific to measuring a number of different symptoms10 symptoms and two open questions about the symptom that affected the patient the most and that has improved the mostPhysical healthWide spectrum of cancer and non-cancer diseases
HADS [42]Assess for depression and anxiety14 items on depression and anxietyMental healthGeneral populations
CRQ [19]Interviewer-administered questionnaire measuring physical and emotional aspects, with higher scores indicating better HRQoL20 items on dyspnoea, fatigue, emotional function and masteryHRQoL
Physical health
Mental health
Chronic respiratory disease including mild-to-moderate non-cystic fibrosis, bronchiectasis and COPD
EQ-5D [19, 43]Self-reported questionnaire used to characterise current health states15 items on mobility, self-care, usual activities, pain/discomfort and anxiety/depressionHRQoLN/A; generic measure of health conditions
EQ-5D-HRQoL-VAS [19, 43]EQ-5D questionnaire as above, plus a VAS that allows respondents to score a characteristic or attitude across a continuum of values15 items as above and VASHRQoLN/A
LCADL [19, 27]Assesses dyspnoea-related impairment in ADL15 items on self-care, and domestic, physical and social activitiesPhysical health
Social health
COPD may also be valid in ILD and cancer
0 to 10 NRSA scale used to quantify an attribute0 to 10 scalePhysical health
Mental health
CSRI [19]Collects information on range of servicesVariable items on health, voluntary and social care servicesSocial healthN/A
Japanese version of Support Team Assessment Schedule (STAS-J) [21, 44]Adapted from STAS, which assesses outcomes of PC9 core items or up to 20 optional items on physical, psychosocial, spiritual, communication, planning, family concerns and service aspectsPhysical healthGeneral populations
RAND-36 [45]General HRQoL survey36 items on physical functioning, role limitations cause by physical health problems, role limitations caused by emotional problems, social functioning, emotional well-being energy/fatigue, pain and general health perceptionsHRQoL
Physical health
Mental health
Social health
General populations
mESAS [25]Self-rated, numerical-rating, symptom-based scale developed to assess symptoms12 items on symptoms, one of general well-being, and standardised body diagram where areas of pain can be markedPhysical health
Mental health
SPARC Questionnaire [46]Screening tool which provides a profile of needs to identify patients who may benefit from PC45 items on physical, psychological, social and spiritual needsPhysical healthCancer
Subjective clinical effectiveness rating [31]Subjective rating of good, moderate, poor, or unknown to measure symptom relief1 itemPhysical healthN/A
MQoLEvaluates QoL17 items on physical well-being, physical symptoms, psychological symptoms, existential well-being and support, and overall QoLHRQoLAdvanced diseases
MSDS [47]Symptom measurement tool13 items on symptomsPhysical health
Mental health
Chronic disease, primarily cancer
PPS [48]Uses five parameters to correlate with actual survival and median survival time1 scale with 5 parameters (ambulation, activity level evidence of disease, self-care, intake and level of consciousness)Physical healthVarious diseases, primarily cancer

ILD: interstitial lung disease; SRPC: Swedish Register of Palliative Care; EOL: end of life; N/A: not applicable; ACP: advance care planning; Wakefield-SADI: Wakefield Self-assessment of Depression Inventory; MRC: Medical Research Council Dyspnoea Scale; COPD: chronic obstructive pulmonary disease; mMRC: modified MRC; SDI: social deprivation index; KB-ILD: Kings Brief ILD Questionnaire; HRQoL: health-related quality of life; SGRQ: St George's Respiratory Questionnaire; IPF: idiopathic pulmonary fibrosis; SGRQ-I: IPF-specific version of St George's Respiratory Questionnaire; POS: Palliative Care Outcome Scale; PC: palliative care; POS-S: POS-Symptoms; HADS: Hospital Anxiety and Depression Scale; CRQ: Chronic Respiratory Disease Questionnaire; VAS: visual analogue scale; LCADL: London Chest Activity of Daily Living; ADL: activities of daily living; NRS: numeric rating scale; CSRI: Client Services Receipt Inventory; STAS: Support Team Assessment Schedule; mESAS: Modified Edmonton Symptom Assessment; SPARC: modified Sheffield Profile for Assessment and Referral to Care; MQOL: McGill Quality of Life Questionnaire; QoL: quality of life; MSDS: McCorkle Symptom Distress Scale; PPS: palliative performance scale.