title: 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.
authors: Department of Clinical Genetics, Center for Human and Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands.
authors: Joël
authors: J
authors: Vos
authors: Christi J
authors: CJ
authors: van Asperen
authors: Jan C
authors: JC
authors: Oosterwijk
authors: Fred H
authors: FH
authors: Menko
authors: Margriet J
authors: MJ
authors: Collee
authors: Encarna
authors: E
authors: Gomez Garcia
authors: Aad
authors: A
authors: Tibben
mesh_terms: D019313:BRCA1 Protein / Q000235:genetics; D024682:BRCA2 Protein / Q000235:genetics; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology*; D003142:Communication; D005163:Factor Analysis, Statistical; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand; D006801:Humans; D009426:Netherlands; D010051:Ovarian Neoplasms / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D010353:Patient Education as Topic; D011599:Psychopathology; D057566:Self Report; D013315:Stress, Psychological; D011795:Surveys and Questionnaires
chemical_list: D019313:BRCA1 Protein; D024682:BRCA2 Protein