“Left in limbo”: Exploring how patients with colorectal cancer interpret and respond to a suspected Lynch syndrome diagnosis

Table 1 Participant characteristics (n = 15)

Characteristic	Categories	n (%)
Gender	Male	8 (53)
Gender	Female	7 (47)
Age at CRC diagnosis^a	25–34	3 (20)
	35–44	6 (40)
	45–54	2 (13)
	55–64	1 (7)
	65 or older	3 (20)
Education level	High school	2 (13)
	Professional certificate/diploma	4 (27)
	Bachelor degree and above	9 (60)
Ethnicity	Caucasian	12 (80)
Ethnicity	Non-Caucasian	3 (20)
Occupation^b	Non-health-related	9 (60)
Occupation^b	Health-related	6 (40)
Pathological stage of CRC^c	Stage I	6 (40)
	Stage II	7 (47)
	Stage III	2 (13)
	Stage IV	0 (0)
Tumour MMR immunohistochemistry	LOE MLH1 and PMS2	7 (47)
	LOE MSH2 and MSH6	4 (27)
	LOE MSH6	2 (13)
	LOE MSH6 and PMS2	1 (7)
	LOE PMS2	1 (7)
Number of LS-associated primary cancers^d	1	14 (93)
Number of LS-associated primary cancers^d	2	1 (7)
Number of first- and second-degree relatives with LS-associated cancers^d	0	7 (47)
	1	4 (27)
	≥2	4 (27)
Australian state/territory	Victoria	8 (53)
	New South Wales	2 (13)
	Australian Capital Territory	2 (13)
	Western Australia	2 (13)
	Queensland	1 (7)
Geographic location	Metropolitan	10 (67)
Geographic location	Regional	5 (33)

^a For the one participant with multiple LS-associated cancers, age at their earliest cancer diagnosis was used
^b Health-related occupations included a clinician, medical imager, medical receptionist, medical researcher, nurse and psychologist. Non-health-related occupations included the areas of teaching, information technology, aviation, meteorology, hairdressing/beauty therapy, trades, project management and administration
^c Cancer stage was based on the American Joint Committee on Cancer (AJCC) tumour-node-metastasis (TNM) system (7th or 8th edition) [33, 34]
^d LS-associated cancers include CRC, endometrial carcinoma, small bowel adenocarcinoma and ureter or renal pelvis cancer as per Amsterdam II criteria [35]. Cases of kidney cancer where further details of the type of kidney cancer were not available were included

ISSN: 1897-4287