Does enhanced information at cancer genetic counseling improve counselees’ knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives? – a randomized study

Figures & data

Figure 1.  Profile of the randomization and participant flow.

Table I.  Socio-demographic characteristics of participants

	Intervention (n = 73)	Control (n = 74)
Gender
Male	6	8
Female	67	66
Health status
Cancer patients	28	26
Non-affected counselees	45	48
Referred due to cancer/family history of
Breast cancer	45	49
Breast/ovarian cancer	17	18
Colorectal cancer	11	7
Level of the risk estimated by the geneticist
Non-affected counselees	n (%)	n (%)
≤ 20%	8 (20)	9 (19)
21–40%	29 (72.5)	37 (77)
> 40%	2 (5)	2 (4)
Affected counselees’ relatives
≤ 20%	5 (15)	6 (23)
21–40%	23 (70)	17 (65.5)
> 40%	3 (9)	1 (4)

Figure 2.  An overview of design and used questionnaires.

Table II.  Counselees’ knowledge about hereditary cancer and genetics

					Two-way ANOVA
		Pre-counseling	2-week	8-month	Effects
Knowledge	n^a	Mean (CI^b)	Mean (CI)	Mean (CI)	Group	Time	Group x Time
“Breast cancer group” (Scale range 0–11)
Intervention	35	8.6 (8.29, 9.02)	9.6 (9.45, 10.06)	9.5 (8.98, 9.88)
Control	38	8.5 (8.09, 8.83)	9.1 (8.49, 9.39)	9.3 (8.83, 9.63)	N.S	p < 0.001	N.S
“Breast/ovarian cancer group” (Scale range 0–13)
Intervention	16	9.9 (9.23, 10.52)	10.7 (9.92, 11,46)	10.9(9.99, 11.76)
Control	16	10.2 (9.48, 11.02)	10.5(10.06, 10.93)	10.4 (9.70, 11,04)	N.S	N.S	N.S
“Colorectal cancer group” (Scale range 0–12)
Intervention	7	9.7 (8.05, 11.38)	10.1(8.59, 11.69)	10.1 (7.85, 12.43)
Control	5	10.6 (9.18, 12.01)	9.0 (6.68, 11.32)	10.0 (7.68, 12.32)	N.S	N.S	N.S

^a Data is missing for some counselees.

^b Confidence Interval 95%.

Table III.  Counselees’ risk estimation expressed in percentage

	Intervention		Control
	Total n	n (%)	Total n	n (%)
Number of non-affected counselees who estimated their own risk correctly
Pre-counseling	39	18 (47)^a	47	22 (47)^a
Post-counseling	38	21 (55) *	47	42 (89) ^*,^a
Two-week	34	28 (82)^a	38	35 (92)^a
Eight-month	35	21 (60)	36	22 (61)
Number of affected counselees who estimated their relatives’ risk correctly
Pre-counseling	34	10 (29)^a	29	9 (35)^a
Post-counseling	33	22 (67)^a	26	12 (46)
Two-week	30	22 (73)^a	29	17 (59)
Eight-month	26	19 (73)^a	26	19 (73)^a

^aSignificant difference within subjects over time.

*Significant difference between groups.

Table IV.  Counselees’ risk estimation compared to their peers

	Intervention		Control
	Total n	n^1(%)	Total n	n (%)
Number of non-affected counselees who correctly estimated their own risk compared with others
Pre-counseling	41	8 (19.5)^a	46	13 (28)^a
Post-counseling	41	16 (39)^a	46	16 (35)
Two-week	37	13 (35)*	38	22 (58)^*,^a
Eight-month	35	11 (31)	35	7 (20)
Number of affected counselees who estimated the risk of a specific relative correctly compared with others
Pre-counseling	33	8 (24)	23	7 (30)
Post-counseling	34	14 (42)	25	11 (48)
Two-week	29	11 (39)	26	10 (43.5)
Eight-month	25	5 (20)	22	4 (20)

¹Data is missing for some participants.

* Significant difference between groups.

^a Significant difference within subjects over time.

Table V.  Counselees’ satisfaction with genetic counseling

	Intervention(n = 73)		Control (n = 73)^a
Satisfaction with Genetic Counseling Scales (SCS)	Mean	Sd	Mean	Sd	t
Dimensions(Min–Max =0–9)
Instrumental satisfaction	7.07	1.48	6.77	1.60	−1.18
Affective satisfaction	8.33	1.13	8.40	0.93	0.43
Procedural satisfaction	8.36	1.00	8.25	0.92	−0.69
Items(Min–Max =0–3)
Fulfillment of expectation	2.78	0.45	2.67	0.53	−1.35
Content of information	2.78	0.42	2.62	0.59	−1.94*
Direct level of satisfaction	2.84	0.37	2.83	0.44	−0.03
Satisfaction with Onco-genetic Information Scale (SOIS) Scales (1 = low 4 = high)		Intervention (n = 73)		Control (n = 72)
I have received satisfactory information about
How disease inherits	3.8	0.46	3.6	0.57	-1.53
My risk for developing …	3.7	0.51	3.5	0.63	-1.86
Which relatives are involved with the information I have received	3.8	0.56	3.7	0.62	-1.12
How shall I inform my relatives	3.6	0.72	3.1	0.94	-3.63**
Which preventive measures should I take	3.5	0.72	3.3	0.84	-1.54
Where shall I turn to for receiving the information I need	3.9	0.37	3.8	0.56	-0.72

^a Data is missing for some participants

*p <0.05

** p <0.01

Table VI.  The result of anxiety and depression

				Two-way ANOVA
	Pre-counseling	2-week	8-month	Effects
N = 126^a	Mean (CI^b)	Mean (CI^b)	Mean (CI^b)	Group	Time	Group X Time
Anxiety
Intervention	6.3 (5.21, 7.33)	5.7 (4.64, 6.76)	5.3 (2.28, 6.26)
Control	5.6 (4.57, 6.57)	5.4 (4.30, 6.49)	4.8 (3.78, 5.84)	N.S	P < 0.01	N.S
Depression
Intervention	3.1 (2.32, 3.83)	2.6 (1.97, 3.23)	2.7 (1.95, 3.38)
Control	3.4 (2.56, 4.17)	2.9 (2.19, 3.72)	2.5 (1.86, 3.24)	N.S	P < 0.01	N.S

^aData is missing for some counselees.

^bConfidence Interval 95%.