Categorisation of domains and outcome measures
| Domains | HRQoL | Physical health | Mental health | Social health | ACP |
| Outcomes measured | General HRQoL | ADL Dyspnoea Energy Fatigue GI symptoms Pain (including intensity, interference and quality) Physical function Pruritus Sexual function Sleep disturbance and sleep-related impairment Other (including cough, headache and weight loss) | Anxiety Depression Alcohol use Anger Cognitive function (including. altered mental status/delirium, level of consciousness, cognitive decline) Life satisfaction Meaning and purpose Positive effect Psychosocial illness impact Self-efficacy for managing chronic conditions Smoking Substance use | Ability to participate in social roles and activities Companionship Satisfaction with social roles and activities Social isolation Social support | ACP activities (code status, advance directives) Expected versus unexpected death GOC discussions (including prognosis and end-of-life care) LOC LOD Mechanical support Specialist palliative care |
| Instruments used to assess domain | KB-ILD SGRQ CRQ EQ-5D EQ-5D-HRQoL-VAS POS RAND-36 A single 11-point general QoL item from the McGill QoL Questionnaire | SRPC EOL questionnaire MRC mMRC D12 scale POS CRQ LCADL NRS STAS-J mESAS RAND-36 POS-S SPARC Subjective clinical effectiveness rating MSDS PPS | SRPC EOL questionnaire Wakefield-SADI HADS CRQ mESAS RAND-36 NRS MSDS | SDI CSRI RAND-36 LCADL | SRPC EOL Questionnaire |
| Examples | Self-reported overall QoL in patients with chronic respiratory disease assessed via CRQ | Symptoms of dyspnoea assessed via mMRC | Symptoms of anxiety/depression assessed via HADS or Wakefield-SADI | Retrospective review of patient records regarding ability of patient to communicate with family/caregivers at EOL | Retrospective review of patient records regarding presence of DNR order prior to patient death |
HRQoL: health-related quality of life; ACP: advance care planning; ADL: activities of daily living; GI: gastrointestinal; GOC: goals of care; LOC: location of care; LOD: location of death; KB-ILD: King's Brief ILD Questionnaire; SGRQ: St George's Respiratory Questionnaire; CRQ: Chronic Respiratory Disease Questionnaire; VAS: visual analogue scale; POS: Palliative Care Outcome Scale; QoL: quality of life; SRPC: Swedish Register of Palliative Care; EOL: end of life; MRC: Medical Research Council Dyspnoea Scale; mMRC: modified MRC; LCADL: London Chest Activity of Daily Living; NRS: Numerical Rating Scale; STAS-J: Japanese version of the Support Team Assessment Schedule; mESAS: modified Edmonton symptom assessment; POS-S: Palliative Care Outcome Scale-Symptoms; SPARC: modified Sheffield Profile for Assessment and Referral to Care Questionnaire; MSDS: McCorkle Symptom Distress Scale; PPS: palliative performance scale; Wakefield-SADI: Wakefield Self-Assessment Depression Inventory; HADS: Hospital Anxiety and Depression Scale; SDI: social deprivation index; CSRI: Client Services Receipt Inventory; DNR: do not resuscitate.