Conflicts of Interest
All other authors have no competing financial or non-financial interests to declare.
Funding
AS reports financial support was provided by The University of Sydney Lambert Initiative for Cannabinoid Therapeutics, which is a philanthropically funded research program at the University of Sydney by Barry and Joy Lambert. AS has received consulting fees from the Medical Cannabis Industry Australia (MCIA) for a commissioned review and Haleon (consumer healthcare subsidiary of Glaxo Smith-Kline). ISM reports financial support was provided by The University of Sydney Lambert Initiative for Cannabinoid Therapeutics. He reports research grants and salary support from the Australian National Health and Medical Research Council (NHMRC) and from the Lambert Initiative for Cannabinoid Therapeutics. ISM also has patents WO2020102857A1 and WO2021042178A1 related to use of small molecules (non-cannabinoid) for treating weight gain and opioid withdrawal, as well as patents WO2019227167 and WO2019071302 issued, which relate to cannabinoid therapeutics.
N | PWE | N | Caregiver of a PWE | N | Total | |
---|---|---|---|---|---|---|
Age (years) | 102 | 40.9±12.3 | 24 | 14.1±8.9* | 126 | 35.7±15.7 |
Gender | 102 | 24 | 126 | |||
Male | 55 (53.9) | 14 (58.3)* | 69 (54.8) | |||
Female | 43 (42.2) | 10 (41.7)* | 53 (42.1) | |||
Non-binary/gender fluid | 1 (1.0) | 0 (0.0)* | 1 (0.7) | |||
Unspecified | 3 (2.9) | 0 (0.0)* | 3 (2.4) | |||
Relationship status | 102 | 24 | 126 | |||
Partnered (currently in relationship) | 42 (41.2) | 16 (66.7) | 58 (46.0) | |||
Single (not currently in relationship) | 60 (58.8) | 8 (33.3) | 68 (54.0) | |||
Indigenous status | 102 | 24 | 126 | |||
Aboriginal and/or torres strait Islander | 14 (13.7) | 3 (12.5) | 17 (13.5) | |||
State/territory | 102 | 24 | 126 | |||
New South Wales | 42 (41.2) | 10 (41.6) | 52 (41.3) | |||
Queensland | 29 (28.4) | 4 (16.7) | 33 (26.2) | |||
Victoria | 14 (13.7) | 4 (16.7) | 18 (14.3) | |||
Western Australia | 8 (7.8) | 3 (12.5) | 11 (8.7) | |||
South Australia | 7 (6.9) | 3 (12.5) | 10 (7.9) | |||
Tasmania | 2 (2.0) | 0 (0.0) | 2 (1.6) | |||
Australian Capital Territory | 0 (0.0) | 0 (0.0) | 0 (0.0) | |||
Northern Territory | 0 (0.0) | 0 (0.0) | 0 (0.0) | |||
Remote offshore territories | 0 (0.0) | 0 (0.0) | 0 (0.0) | |||
Employment status | 102 | 24 | 126 | |||
Full-time work | 31 (30.4) | 8 (33.3) | 39 (30.8) | |||
Part-time work | 13 (12.7) | 7 (29.2) | 20 (15.9) | |||
Home duties | 2 (2.0) | 2 (8.3) | 4 (3.2) | |||
Student | 5 (4.9) | 1 (4.2) | 6 (4.8) | |||
Unemployed | 17 (16.7) | 0 (0.0) | 17 (13.5) | |||
Retired | 3 (2.9) | 3 (12.5) | 6 (4.8) | |||
Disability pension | 27 (26.5) | 1 (4.2) | 28 (22.2) | |||
Other | 4 (3.9) | 2 (8.3) | 6 (4.8) | |||
Total household’s income per year | 102 | 24 | 126 | |||
$0 to $50,000 | 62 (60.9) | 5 (20.8) | 67 (53.2) | |||
$50,001 to $100,000 | 14 (13.7) | 2 (8.4) | 16 (12.6) | |||
$100,001 to $150,000 | 18 (17.6) | 5 (20.8) | 23 (18.3) | |||
>$150,000 | 8 (7.8) | 12 (50.0) | 20 (15.9) |
N | PWE | N | Caregiver of a PWE | N | Total | |
---|---|---|---|---|---|---|
Age at diagnosis | 102 | 24.5±13.9 | 24 | 4.5±4.6* | 126 | 126.0±100.0 |
Health provider who made epilepsy diagnosis | 102 | 24 | 126 | |||
General practitioner | 9 (8.8) | 2 (8.3) | 11 (8.7) | |||
Adult neurologist | 41 (40.2) | 2 (8.3) | 43 (34.1) | |||
Child neurologist | 16 (15.7) | 10 (41.8) | 26 (20.6) | |||
Paediatrician | 4 (3.9) | 5 (20.8) | 9 (7.1) | |||
Doctor in the hospital | 31 (30.4) | 5 (20.8) | 36 (28.7) | |||
Other | 1 (1.0) | 0 (0.0) | 1 (0.8) | |||
Episodes of status epilepticus | 102 | 24 | 126 | |||
Yes | 39 (38.2) | 14 (58.3) | 53 (42.1) | |||
No | 63 (61.8) | 10 (41.7) | 73 (57.9) | |||
Number of ASMs currently taking | 102 | 2.0±1.5 | 24 | 2.5±1.5 | 126 | 2.1±1.5 |
Number of ASMs tried and stopped | 102 | 3.5±4.0 | 24 | 7.6±8.2 | 126 | 4.5±5.5 |
Using cannabis as an adjunct to ASMs | 102 | 24 | 126 | |||
Yes | 81 (79.4) | 21 (87.5)† | 102 (81.0) | |||
No | 21 (20.6) | 3 (12.5) | 24 (19.0) | |||
Drug-resistant epilepsy | 102 | 42 (41.2) | 24 | 20 (83.3)† | 126 | 62 (49.2) |
Number of hospitalisations due to epilepsy | 102 | 24 | 126 | |||
0 time | 12 (11.9) | 3 (12.5) | 15 (11.9) | |||
1–3 times | 34 (33.3) | 3 (12.5) | 37 (29.4) | |||
4–6 times | 24 (23.5) | 3 (12.5) | 27 (21.4) | |||
6–10 times | 9 (8.8) | 6 (25.0) | 15 (11.9) | |||
>10 times | 23 (22.5) | 9 (37.5) | 32 (25.4) | |||
Medical conditions other than epilepsy | 102 | 24 | 126 | |||
Developmental | 15 (14.7) | 16 (66.7) | 31 (24.6) | |||
Mental health | 46 (45.1) | 6 (25.0) | 52 (40.5) | |||
Pain | 46 (45.1) | 6 (25.0) | 52 (41.3) | |||
Sleep | 58 (56.9) | 9 (37.5) | 67 (53.2) | |||
Gastrointestinal | 24 (23.5) | 3 (12.5) | 27 (21.4) | |||
Cardiovascular | 6 (5.9) | 2 (8.3) | 8 (6.3) | |||
Endocrine/metabolic | 8 (7.8) | 1 (4.2) | 9 (7.1) | |||
Neurological | 23 (22.5) | 8 (33.3) | 31 (24.6) | |||
Cancer | 5 (4.9) | 0 (0.0) | 5 (4.0) | |||
Other | 17 (16.7) | 2 (8.3) | 19 (15.1) | |||
No other medical conditions | 10 (9.8) | 3 (12.5) | 13 (10.3) |
Presence of seizure types* | Most frequent seizure type | Most impactful seizure type | |||||||
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PWE (n=102) | Caregiver of a PWE (n=24) | Total (n=126) | PWE (n=102) | Caregiver of a PWE (n=24) | Total (n=126) | PWE (n=102) | Caregiver of a PWE (n=24) | Total (n=126) | |
Focal aware | 41 (40.2) | 7 (29.2) | 48 (38.1) | 22 (21.6) | 2 (8.3) | 24 (19.0) | 7 (6.9) | 1 (4.2) | 8 (6.3) |
Focal unaware | 37 (36.3) | 10 (41.7) | 47 (37.3) | 13 (12.7) | 3 (12.5) | 16 (12.7) | 21 (20.6) | 5 (20.8) | 26 (20.6) |
Tonic clonic | 63 (61.8) | 15 (62.5) | 78 (61.9) | 27 (26.5) | 8 (33.3) | 35 (27.8) | 47 (46.1) | 12 (50.0) | 59 (46.8) |
Absence | 36 (35.3) | 12 (50.0) | 48 (38.1) | 11 (10.8) | 5 (13.9) | 16 (12.7) | 6 (5.9) | 1 (4.2) | 7 (5.6) |
Atonic | 11 (10.8) | 5 (20.8) | 16 (12.7) | 2 (2.0) | 0 (0.0) | 2 (1.6) | 1 (1.0) | 0 (0.0) | 1 (0.8) |
Tonic | 11 (10.8) | 8 (33.3) | 19 (15.1) | 4 (3.9) | 3 (12.5) | 7 (5.6) | 2 (2.0) | 1 (4.2) | 3 (2.4) |
Myoclonic | 19 (18.6) | 8 (33.3) | 27 (21.4) | 11 (10.8) | 3 (12.5) | 14 (11.1) | 4 (3.9) | 2 (8.3) | 6 (4.8) |
I do not know | 10 (9.8) | 3 (12.5) | 13 (10.3) | 8 (7.8) | 2 (8.3) | 10 (7.9) | 8 (7.8) | 2 (8.3) | 10 (7.9) |
Other | 4 (3.9) | 1 (4.2) | 5 (4.0) | 4 (3.9) | 0 (0.0) | 4 (3.2) | 6 (5.9) | 0 (0.0) | 6 (4.8) |