Psychosocial aspects of hereditary cancer (PAHC) questionnaire: development and testing of a screening questionnaire for use in clinical cancer genetics.
BACKGROUND
Up to three-quarters of individuals who undergo cancer genetic counseling and testing report psychosocial problems specifically related to that setting. The objectives of this study were to develop and evaluate the screening properties of a questionnaire designed to assess specific psychosocial problems related to cancer genetic counseling.


METHODS
We adopted the European Organisation for Research and Treatment of Cancer Quality of Life Group guidelines to develop the Psychosocial Aspects of Hereditary Cancer (PAHC) questionnaire, a 26-item questionnaire organized into six problem domains: genetics, practical issues, family, living with cancer, emotions, and children. The Distress Thermometer and a question per domain on the perceived need for extra psychosocial services were included as well. We administered the questionnaire and the Hospital Anxiety and Depression Scale to 127 counselees at the time of genetic counseling and 3 weeks after DNA test disclosure. As a gold standard to evaluate the screening properties of the questionnaire, participants underwent a semi-structured interview with an experienced social worker who assessed the presence and severity of problems per domain.


RESULTS
A cutoff score representing responses of 'quite a bit' or 'very much' to one or more items within a given problem domain yielded moderate to high sensitivity across domains. A cutoff of 4 on the Distress Thermometer yielded high sensitivity. The questions regarding the perceived need for extra psychosocial services yielded high specificity and negative predictive values.


CONCLUSIONS
The Psychosocial Aspects of Hereditary Cancer questionnaire in combination with the Distress Thermometer can be used as a first-line screener for psychosocial problems within the cancer genetic counseling setting.
Department of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands.
W
W
Eijzenga
E M A
EM
Bleiker
D E E
DE
Hahn
I
I
Kluijt
G N
GN
Sidharta
C
C
Gundy
N K
NK
Aaronson
D000293:Adolescent; D000328:Adult; D000368:Aged; D001007:Anxiety / Q000175:diagnosis* / Q000523:psychology; D003863:Depression / Q000175:diagnosis* / Q000523:psychology; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing; D006801:Humans; D008297:Male; D008403:Mass Screening; D008875:Middle Aged; D009386:Neoplastic Syndromes, Hereditary / Q000235:genetics / Q000523:psychology*; D009426:Netherlands; D013315:Stress, Psychological / Q000175:diagnosis* / Q000523:psychology; D011795:Surveys and Questionnaires; D055815:Young Adult
hereditary cancer; oncology; psychosocial problems; questionnaire development; screening properties