The counselees' self‐reported request for psychological help in genetic counseling for hereditary breast/ovarian cancer: not only psychopathology matters

Abstract

Background Several studies have shown that counselees do not experience psychopathological levels of distress after DNA test result disclosure. However, it has not systematically been studied whether the absence of psychopathology also means that counselees do not want to receive help. Their self‐reported request for help may be related not only with psychopathology/distress but also with other psychological needs (e.g., surgery decisions), genetics‐specific needs (e.g., feeling vulnerable/stigmatized), and existential concerns (e.g., meaning in life). Methods Questionnaires were filled in by Dutch cancer patients, before and after disclosure of BRCA1/2 test results for hereditary breast/ovarian cancer: pathogenic mutation results (n = 30), uninformative results (n = 202), or unclassified variants (n = 16). Newly developed questions measured request for help, psychopathology was estimated with factor analyses on distress/psychopathology instruments, and several validated questionnaires measured other needs/concerns. Results One‐third of all counselees who reported a request for psychological help had actually received help. The level of psychopathology correlated between 0.34 and 0.44 with this self‐reported need‐for‐help. Other needs, genetics‐specific distress, and existential concerns correlated strongly/moderately with the counselees' self‐reported need‐for‐help. Examples of other needs were intention to undergo surgery, inaccuracy of their interpretation, the impact of cancer, and family communication difficulties. Genetics‐specific distress was for instance feeling vulnerable to develop cancer, stigma, and lack of mastery. Existential concerns were, among others, lack of purpose in life, low self‐acceptance, and an unfulfilled wish for certainty. Conclusions The request for help is related to multiple factors. Referral to psychosocial professionals may be improved by not only discussing psychopathology during genetic‐counseling sessions but also by other needs and existential concerns. Questions about other needs and existential issues may be added to psychological screening instruments. Copyright © 2012 John Wiley & Sons, Ltd.

Perceived influence of psychological consultation on psychological well‐being, body image, and intimacy following bilateral prophylactic mastectomy: A qualitative analysis

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Psychiatric implications of cancer genetic testing

“…[84][85][86][87] If concerns are noted, then the genetic counselor could ask patients, "Would you like to speak with a social worker or psychologist?" 124 Several screening instruments also are available, offering another option to assess psychosocial needs. The Genetic Psychosocial Risk Instrument (GPRI) 125 is a validated, brief, and reliable 20-item instrument that screens for psychological risk among adults who are undergoing genetic testing for cancer and other adultonset hereditary diseases, but it is not specific to cancer.…”

Factors affecting breast cancer patients' need for genetic risk information: From information insufficiency to information need

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