Table 1. Outcomes assessed and characteristics, scoring, and details of use for patient-reported outcome measures (PROMs) administered to QUEST participants.

Outcome PROM		Number of items	Domains	Rating	Recall period	Scoring	Details
HRQL
	EQ-5D-5L Health status questionnaire developed by the EuroQoL Group [21].	5	Mobility, self-care, usual activities, pain/discomfort, and anxiety/depression.	Items rated 1 (no problem) to 5 (extreme problem or inability)	‘today’	EQ-5D responses were transformed using Australian population utility weights [22] and combined to produce a health index ranging from 0 (death) to 1 (perfect health). Negative values reflect a perceived health state worse than being dead. Higher scores indicate better HRQL.	EQ-5D has been used in published cannabis studies of HRQL in people with neuropathic pain [23,24], and irritable bowel disease [25].
	QLQ-C30 The European Organization for Research & Treatment of Cancer (EORTC) core quality of life questionnaire (QLQ-C30) [26].	30	Functioning (physical, role, emotional, cognitive and social), global health status quality of life, and symptoms (fatigue, nausea/vomiting, pain, dyspnea, insomnia, appetite loss, constipation, diarrhea) and financial impact.	Items rated 1 (not at all) to 4 (very much), except global health items rated 1 (very poor) to 7 (excellent)	past week	A QLQ-C30 summary score [27] was generated from 27 of the 30 items, excluding the global health and financial impact items, to produce a score between 0 and 100. Higher scores indicate better HRQL.	QLQ-C30 was designed for assessing patients in cancer clinical trials, however it has also been used in other health conditions [28–32], the Australian general population [33], and medical cannabis studies in people with cancer pain. [34,35]
	QLQ-C15-PAL† EORTC quality of life questionnaire for use in Palliative care setting [36].	15	Functioning (physical, emotional), global quality of life, and symptoms (fatigue, nausea/vomiting, pain, dyspnea, insomnia, appetite loss, constipation).	Same as QLQ-C30	past week		QLQ-C15-PAL has also been used in other palliative care settings [37,38], and chosen because the subscales correspond with, and can be analyzed alongside, the QLQ-C30.
Pain
	QLQ-C30 Pain subscale (and QLQ-C15-PAL Pain subscale)	2	Pain: Have you had pain? and Did pain interfere with your daily activities?	Items rated 1 (not at all) to 4 (very much).	past week	Pain scale produces a score between 0 and 100, with a higher score representing greater pain. The QLQ-C15-PAL and QLQ-C30 pain scales are the same, providing pain scores for all participants.	This pain scale has previously been used in studies of palliative care patients [39], diabetes [40], chronic pain [41], and medical cannabis studies in people with cancer pain.[35]
Sleep disturbance
	PROMIS Sleep Disturbance 8b The Patient-Reported Outcomes Measurement Information System (PROMIS) Short Form v1.0 Sleep Disturbance 8b [42].	8	Sleep quality, sleep depth, and restoration.	Items rated 1 (not at all) to 5 (very much so).	past 7 days	PROMIS sleep measure generates a T-score with a mean of 50 and standard deviation of 10 in a reference population of the US general population (US 2000 Census) in combination with a clinical sample [43]. Higher scores reflect greater sleep disturbance.‡	PROMIS Sleep disturbance has been shown to be valid and sensitive to changes in sleep in women with fibromyalgia, a condition associated with widespread pain, fatigue, and poor sleep quality [44].
Fatigue
	PROMIS Fatigue 13a PROMIS Short Form v1.0 Fatigue 13a, also known as Functional Assessment of Chronic Illness Therapy–Fatigue Scale (FACIT-Fatigue) [45].	5	Experience of fatigue, and the impact of fatigue on daily activities.	Items rated 1 (not at all) to 5 (very much so).	past 7 days	PROMIS fatigue measure generates a T-score with a mean of 50 and standard deviation of 10 in a reference population of US general population (US 2000 Census) [43]. Higher scores reflect greater fatigue.‡	FACIT-Fatigue has been validated in the general population as well as in patients with cancer, anemia, and arthritis [46,47].
	DASS-21 Depression, Anxiety, Stress Scale -21 [48] is a short version of the DASS-42 [49].	21	Three subscales assessing depression, anxiety, and stress.	Items rated 1 (not at all) to 5 (very much so or most of the time).	past week	For consistent interpretation, DASS-21 scores between 0 and 42 were generated by summing the responses and multiplying by 2 to align with the DASS-42 [50]. Higher scores reflect greater symptom burden	DASS-21 is a validated PROM of depression and anxiety used in routine assessment of in-patients [48], patients with multiple sclerosis [51], pain [52], and in the general population [53].
Depression
	DASS-21 Depression subscale	7	Dysphoria, hopelessness, devaluation of life, self-deprecation, lack of interest/involvement, anhedonia, and inertia.	Items rated 0 (not at all) to 3 (very much or most of the time)	past week	DASS-depression scores were categorized into severity levels at each timepoint as follows: 0–9 normal, 10–13 mild, 14–20 moderate, 21–27 severe, 28+ extremely severe [50].
Anxiety
	DASS-21 Anxiety subscale	7	Autonomic arousal, skeletal muscle effects, situational anxiety, and subjective experience of anxious affect.	Items rated 0 (not at all) to 3 (very much or most of the time)	past week	DASS-anxiety scores were categorized into severity levels at each timepoint as follows: 0–7 normal, 8–9 mild, 10–14 moderate, 15–19 severe, 20+ extremely severe [50].

DASS Depression, Anxiety, Stress Scale; HRQL health-related quality of life; PROM patient-reported outcome measure.

^†To reduce burden, palliative care patients with advanced, symptomatic, incurable conditions, only completed two PROMs at each timepoint (QLQ-C15-PAL and EQ-5D-5L). Non-palliative care participants completed all PROMs at each timepoint (except QLQ-C15-PAL).

^‡The HealthMeasures Scoring Service recommended for PROMIS instruments was used to calculate T-scores because it uses item level calibrations more accurately than manually transforming total raw scores [54].