The counselees’ self-reported wish for

psychological help in genetic-counseling

for hereditary breast/ovarian cancer:

Not only psychopathology matters

Dr. Joël Vos

Prof. Irma Verdonck-de Leeuw
Prof. Aad Tibben

Sponsor:
 Overview

1. Background: clinical and literature

2. Methods
3. Results
4. Discussion

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 1. Background
Genetic counseling
• Guidelines suggest offering adequate psychological counseling
next to help and explanation by the genetic-counselor
• Netherlands:
-until recently : psychosocial counseling standard
-recently: psychosocial counseling nonstandard,
• Reasons of policy change
-little psychopathology and distress observed
-small raise of psychopathology, often decreases quickly
• Practice of referral to psychologist or social worker:
-option of referral is generally mentioned
-obvious presence of psychopathology

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 1. Background
Questions about psychopathology as basis of referral: literature

1. Needs other than psychopathology

- psychological issues may exist without distress or pathology
e.g. decisions mastectomy, tell the family
- general cancer population:
low correlation distress level and need for psychological help

2. Genetic counseling-specific distress

- general instruments to measure distress:e.g. depression, anxiety
- genetic counseling-specific distress: e.g. vulnerability, stigma, uncertainty

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 1. Background
Questions about psychopathology as basis of referral: literature

3. Existential needs
- Genetic-counseling may be regarded inherently as an existential
process: who am I? how long will I live?
- examples: identity, purpose in life, future, need for certainty,
accepting life as including many uncertainties
- little research

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 1. Background
Aim : explorative study on reasons to ask for psychological help, to
develop better (?) referral guidelines next to pathology

Research questions

1. How many counselees report a psychological need for help?

2. Why do counselees want to receive help?

Possible correlations:
1. psychopathology
2. non-psychopathology:
a. other needs,
b. genetic counseling-specific distress,
c. existential concerns

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 2. Method
Procedure

2004-2009 VUMC Amsterdam, LUMC Leiden, Maastricht UMC,

UMCG Groningen, Erasmus MC

BRCA1/2 hereditary breast/ovarian cancer

Measurement after intake/before result (T0), 3 months after (T1)

Communicated DNA-test result: pathogenic mutation

uninformative, unclassified-variant
consequences: cancer-risks, medical options,
etc.

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 2. Method
Instruments: short overview
1. Counselees’ wish for psychological help
-Recent studies cancer-patients: 1 question (eg Van Scheppingen)
-‘Would you like to receive help from psychologist or social worker?’
1-7 Likert-scale (no need – strong need)
2. Psychopathology
-Several instruments: HADS, LCW, PANAS, IES
-PCA showed 2 factors: negativity, worries
3. Non-psychopathology : similar to previous studies: e.g.
-other needs: surgery intentions; N affected relatives, familial openness
-genetics-specific: Esplen’s self-concept scale (vulnerability, stigma, mastery over
cancer); Vos’ life changes questionaire
-existential: Ryff’s wellbeing; Vos’ Unfulfilled Need for Certainty Scale

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 3. Results
Population

N: 467 T0, 248 T1

Cancer type:
94% breast cancer, 6% ovarian (and breast) cancer
Time since cancer diagnosis:
M=5 years
Surgery before DNA-testt
56% symptomatic mastectomy
6% symptomatic bilateral salpingo oophorectomy
Other m=56 yrs, 42% high school or higher, 84%married, 87%
kids

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 3. Results
Self-reported need for help

After intake, before DNA-test result (T0)

M=3.6, sd=1.5 27% strong need for help (M>5)
20% actually received help

Three months after DNA-test result (T1)

M=3.2, sd=1.3 20% strong need for help (M>5)
4% actually received help

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 3. Results
Correlations with need for help

1. Psychopathology T0 T1
negativity .34 .34
worries .44 .38

NB: As we will see: similar correlation sizes as the effects of other

needs, genetic counseling-specific distress and existential
concerns.

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 3. Results
Correlations with need for help : non-psychopathology

2. Other needs:
intention to undergo surgery <.24-.44>
family: number children, open communication <.20-.36>
level of misinterpretation of DNA-test result <.20-.28>
perception of cancer: influence on life + mood <.21-.26>

3. genetics-specific distress
BRCA-self concept: vulnerability, stigma, mastery <.24-.43>
Life changes: emotional, physical, existential <.-25-.27>

4. existential concerns
Ryff: mastery, purpose, self-acceptance, vitality, growth <.20-.30>
Unfulfilled need for certainty: DNA, heredity, cancer,self <.20-.37>

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 3. Results
Possible concrete examples of non-psychopathology

Shall I undergo surgery or not?

What does the result imply for my family? how can I tell them?

How can I deal with the influence of cancer –and the possibility of
its recurrence- on my life and how does this DNAresult change this?

Who am I, and how did the cancer and DNA-test result change this answer? How
can I live a meaningful life as being a cancer-patient or mutation-carier?

How can I live with uncertainty about the recurrence of cancer, and the
possibility that my relatives develop cancer?

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 4. Discussion
Conclusion
• 25% strong need for help
• Current referral inadequate: 30% of all who want help received help
• Reason to ask for help seemed to be:
psychopathology AND many other possible reasons
• A simple question –’would you like to receive help?’- correlates with
many other clinically relevant variables

Limitations
• No questionnaire BEFORE intake
• Simplification: datareduction, simple statistics
• Explorative nature
• Only one need for help question was presented
 future studies

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 4. Discussion
Clinical implications
• Good referral may require sensitivity to several topics:
not only obvious psychopathology/distress
other possible reasons for referral
open, reciprocal dialogue about meaning of DNA-test result
sensitivity for existential topics
• Always introduce what a psychosocial worker may offer + subsequently ask: ‘would
you like to receive help?’
• Develop and implement new screening instruments about several life domains
• Develop several ways to psychologically counsel counselees:
- psychological counseling by genetic-counselor
- flyers with information about medical and psychological aspects
- information meetings
- psychological interventions
- existential and spiritual interventions

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 Questions?

Email:
j.vos@vu.nl

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