Table 1.

Participants’ Demographic Information

Characteristic	Range	Mean	SD
Age (years)	17–80	41.61	$\pm$ 14.42
Male	17–74	43.03	$\pm$ 15.53
Female	18–80	40.59	$\pm$ 12.87
Age at diagnosis (years)	2–74	36.89	17.12
Male	2–74	37.04	18.67
Female	3–69	37.76	14.50

	N	%
Gender
Male	199	53.8
Female	158	42.7
Other/Rather not say/not reported a	13	3.5
Capacity to self‐report
Capable of self‐report	352	95.1
Lacking capacity	18	4.9
Current relationship status
Currently in a relationship	151	40.8
Currently single	196	53.0
Other/not reported	23	6.2
Current living status
Live with a family member	122	33.0
Do not live with a family member	241	65.1
Other/not reported	7	1.9
Supportb received
Yes	186	50.3
No	159	43.0
Not reported	25	6.8
Current employment status
Employed (inc. self‐employed)	135	36.5
Otherc/not reported	235	63.5
Educational qualifications
Higherd education qualifications	154	41.6
Other/not reported	216	58.4
Current mental health condition diagnosis
Yes	262	70.8%
No	81	21.9%
Not reported	27	7.3%
Current physical health condition diagnosis
Yes	260	70.3%
No	84	22.7%
Not reported	26	7.0%

^aNote that these participants are excluded from all subsequent analyses which include gender; ^bdata are collected about support in the home with daily living tasks, help at work, that is interacting with co‐workers, managing money, organizing a diary or planning daily activities; ^c‘other’ includes being a career for a relative, long‐term illness, being a full time student, or unable to work; ^d‘higher education' is first‐degree level qualification or above.