Few studies have reported prospective data on psychosocial outcomes after genetic counselling in families with suspected hereditary non-polyposis colorectal cancer (HNPCC). This prospective study examines the impact of multidisciplinary risk counselling on the psychosocial outcome of 139 affected cancer patients and 233 family members without cancer at risk for HNPCC. Participants completed questionnaires specific to HNPCC before and 8 weeks after attending the familial cancer clinic. Affected patients' levels of distress were closely related to their health status and exceeded that of unaffected individuals, as did worry regarding their relatives' risk. A significant reduction in general anxiety (Hospital Anxiety and Depression Scale), distress specific to familial CRC (Impact of Events Scale) and general cancer worry (Distress Hereditary Disorder) was demonstrated after counselling in both affected patients and unaffected individuals. Reduction in distress was more pronounced in affected patients given a high risk of HNPCC compared with those at intermediate risk. Among unaffected individuals, distress declined regardless of what clinical risk they were assigned. Their perceptions of risk and cancer-related threat declined, while confidence in effective surveillance increased. These results suggest the beneficial effects of multidisciplinary counselling even when high-risk information is conveyed. A patient's previous cancer experience is likely to contribute to clinically relevant distress (15% of those patients), indicating the need for appropriate counselling.

PURPOSE: Data on the actual uptake of genetic testing forhereditary nonpolyposis colorectal cancer (HNPCC) in aclinical sample is still inconclusive. The present study aimedto define the actual uptake of genetic counseling and testingoffered to an unselected sample of 140 patients with colorectalcancer, fulfilling clinical criteria (Amsterdam orBethesda) suggestive of HNPCC, and to identify demographicand psychosocial factors associated with the decisionto participate in counseling. METHODS: Crosssectionalsurvey. Eligible subjects had been consecutivelyenrolled in a regional tumor registry between 1994 and1998, and were invited to attend an information session forHNPCC at the time genetic testing for HNPCC became available.Participants and nonparticipants in the informationsession completed a short questionnaire. RESULTS: The actualuptake rate of the information session in this samplewas 26 percent. Participants and nonparticipants were comparablewith regard to clinical criteria suggestive of HNPCC,awareness of the potential hereditary predisposition, andprevious history of cancer in the family. Some 60 percent ofparticipants experienced pronounced distress related totheir potential inheritance of the disorder, compared to 35percent among nonparticipants. Distress reached a clinicallysignificant level in 28 percent of participants. Restrictedcommunication within the family was observed frequently.Irrespective of groups, a positive attitude towardobtaining a gene test result predominated. CONCLUSIONS:Results suggest that expressed intention and attitude towardgenetic testing do not reliably predict actual uptake ofcounseling or testing. Thorough interdisciplinary counselingshould be provided to every patient with clinical criteriasuggestive of HNPCC. The considerable distress related tothe hereditary disorder should be adequately addressed, asshould be communication issues.

In einer explorativen Studie wird untersucht, ob sich im Verlauf einer interdisziplinären Beratung psychische Belastung und gesundheitsbezogene Einstellungen von Ratsuchenden mit Verdacht auf erbliche Disposition für Darmkrebs (Hereditary Non-Polyposis-Colorectal Cancer, HNPCC) verändern. Die konsekutiv erhobene Stichprobe umfasst 65 Ratsuchende (31 an Darmkrebs erkrankte Patienten (Pat) und 34 gesunde Risikopersonen (RP)), die an einer interdisziplinären Beratung teilnahmen. Die Datenerhebung erfolgte vor (T0) und 46 Wochen nach Beratung (T1). Globale und HNPCC-spezifische Belastung sowie Einstellungen wurden zu T0 und T1 identisch mit standardisierten und selbstentwickelten Instrumenten erfasst. Zu T1 fand sich ein Rückgang der globalen und spezifischen Belastung, die Überzeugung hinsichtlich der Wirksamkeit von Früherkennung nahm zu. Subjektives Erkrankungsrisiko und Bedrohlichkeit von Darmkrebs blieben weitgehend unverändert. Tendenziell schätzten Ratsuchende ihre Fähigkeit, mit einem Mutationsnachweis zurecht zu kommen, höher ein als vor Beratung. Alle Veränderungen waren bei RP stärker ausgeprägt als bei Pat. Die Abnahme der Belastung nach Beratung stand in diskretem Zusammenhang mit veränderten Einstellungen. Die meisten Ratsuchenden beurteilten die Beratung als hilfreich und informativ, ein Drittel berichtete über intensivere Kommunikation in der Familie. Ein Drittel berichtete jedoch über vermehrte Sorgen um die familiäre Tumordisposition und erhöhte Wachsamkeit gegenüber körperlichen Symptomen. Weitere Untersuchungen sind notwendig, um hochbelastete Ratsuchende besser identifizieren zu können.

The aim of the study was to explore distress and health beliefs before and after comprehensive interdisciplinary counseling in families at risk for hereditary non-polyposis colorectal cancer (HNPCC). Results reported here were derived from a consecutive sample of 65 counselees [31 patients with colorectal cancer (CRC) and 34 unaffected at-risk persons] who participated in interdisciplinary counseling provided by human geneticists, surgeons, and psycho-oncologists before genetic testing. Data were collected from self-administered questionnaires before, as well as 4-6 weeks after, counseling. Distress and perceptions specific to HNPCC were assessed at both timepoints using standardized as well as author-derived instruments. Distress declined after counseling, as did worries related to HNPCC. An increase was found in personal belief in control of cancer risk, for instance, in the perceived efficacy of early detection of CRC. We also observed a trend toward greater anticipated ability to cope with a positive gene test after counseling. Changes after counseling were generally more pronounced for persons at risk, as compared to patients with cancer. The decrease in distress was partly attributable to an increase in personal self-confidence. One-third of the sample reported enhanced communication specific to hereditary disease within the family after counseling. A substantial minority, however, said they experienced increased worry and physical symptoms after counseling. Overall, counselees demonstrated less stress and perceived cancer threat as well as enhanced beliefs regarding personal control over cancer, suggesting an overall beneficial impact of comprehensive counseling. Further research is needed to identify those individuals most at risk for increased fear and worry related to HNPCC so that they may be most appropriately counseled.