Counselees’ use and evaluation of a website providing computer-tailored information and a question prompt prior to breast cancer genetic counseling

Akke Albada, Sandra van Dulmen, Margreet Ausems, Jozien Bensing

Intervention objectivesIncrease in:

1 Realistic expectations of breast cancer genetic counseling

Counselee knowledge

2 Counselee participation within the consultation

Website prompts counselees to prepare questions

Intervention:

Website for counselees to access prior to their first visit:

- tailored information - question prompt (Invitation to

write down 5 questions)

E-info geneca

Website for counselees (password access)

With information about: – Procedure of genetic counselling– criteria for DNA testing– bc population risks – screening options– Emotional consequences – Communication with family members– How to participate in the consultation

Respondent characteristics (N=90)

%Range

Mean (SD)

Age - 21-70 42.8 (11.4)

Personal history of breast cancer (affected) 49.4 - -

Children (having children) 73

Education: < High school levelHigh school/ vocational coursesUniversity (MSc/BSc)/ higher vocational education (BSc)

8.951.639.3

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Probability of indication for DNA-test (high)

50.6

Information preference (extensive) 89.9

Counselees’ ratings of E-info geneca (N=75)

(totally) agree

The website was … n %

Clearly structured 74 100

Neatly arranged 75 100

Nicely designed 68 94.4

The information on the website was …

Useful 76 100

Easy to understand 74 98.7

Reliable 74 98.7

Helpful 72 96.0

Timely 70 94.6

Helpful to family and friends 67 89.3

Personally relevant 59 78.7

Reassuring 52 70.3

Upsetting 13 17.6

Confusing 8 10.9

Too much 9 12.2

Log file data

Web page requests by date and time with respondent id

Advantage: dosage of intervention as process measure

- Content analysis on QPS

QPS

Results

- Mean visited pages 11 of all 19 web pages (SD 8)

- Each page was viewed 2.2 times on average

- Mean of 10:22 minutes spend on the website (SD 8:40 min.)

Number of page views

Duration of site visit

Results: most viewed topics

• Expectations of genetic counselling (97%)• DNA-testing (97%)• Screening (94%)• Hereditary breast cancer (90%)• Emotional consequences (87%)• Procedure of genetic counselling (45%)• Analysis of family history (36%)

Results: Sequence of page views

- The sequence of items in the menu bar influenced sequence of page views

- On average 48% (SD 30%) of the page requests were in accordance with the provided random menu sequence.

- 6.9 of the 19.7 page views

Factors influencing total duration of website visit

Bivariate:• Affected counselees spent more time

(11:35 vs. 8:03 min for unaffected counselees (t=3.25 α=.02))

• Anxious counselees spent more time (r=.27 α=.01)

Multivariate• Anxiety B=.45 α=.002Controlling for age, education, knowledge, info

needs, worry, having children and being affected

Questions posed

• 42.2% of counselees posed questions

• On average 3.2 questions

(SD 1.2)

Content of questions

• DNA-testing (18)

• Screening options for self or children (16)

• My risk for breast cancer (15)

• Family members’ risk (14)

• Indications for hereditary breast cancer (14)

• Inheritance (9)

Examples of questions

“Can a DNA test result tell whether I will have breast cancer again?”

“My daughter just started taking birth control pils, does that increase her risk?”

“What is the chance that I have this hereditary gene?”

“Should I have regular breast screening?”“If it is hereditary till which generation will

it last?”

Site visit not predictive for questions on QPS

• Counselees using QPS did not spend more time on the site than others

• No significant correlation between number of questions and duration of site view

• No relation between question content and topics of viewed pages

Recap

E-info geneca = website for breast cancer genetic counselees to better prepare for their first visit

- Counselees visited most pages- In the provided sequence- Posed questions unrelated to page

views

a.albada@nivel.nl

Questions and discussion

Funded by Dutch Cancer Society