Prevalence and detection of psychosocial problems in cancer genetic counseling.

W Eijzenga,G N Sidharta,E M A Bleiker,D E E Hahn,L E Van Der Kolk,N K Aaronson

doi:10.1007/s10689-015-9809-9

W Eijzenga, G N Sidharta + Show 4 more

Open Access

https://doi.org/10.1007/s10689-015-9809-9

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Abstract

Only a minority of individuals who undergo cancer genetic counseling experience heightened levels of psychological distress, but many more experience a range of cancer genetic-specific psychosocial problems. The aim of this study was to estimate the prevalence of such psychosocial problems, and to identify possible demographic and clinical variables associated significantly with them. Consenting individuals scheduled to undergo cancer genetic counseling completed the Psychosocial Aspects of Hereditary Cancer (PAHC) questionnaire, the Hospital Anxiety and Depression Scale (HADS) and the Distress Thermometer (DT) prior to or immediately following their counseling session. More than half of the 137 participants reported problems on three or more domains of the PAHC, most often in the domains ‘living with cancer’ (84 %), ‘family issues’ (46 %), ‘hereditary predisposition’ (45 %), and ‘child-related issues’ (42 %). Correlations between the PAHC, the HADS and the DT were low. Previous contact with a psychosocial worker, and having a personal history of cancer were associated significantly with HADS scores, but explained little variance (9 %). No background variables were associated significantly with the DT. Previous contact with a psychosocial worker, and having children were significantly associated with several PAHC domains, again explaining only a small percentage of the variance (2–14 %). The majority of counselees experience specific cancer genetic counseling-related psychosocial problems. Only a few background variables are associated significantly with distress or psychosocial problems. Thus we recommend using the PAHC or a similar problem-oriented questionnaire routinely in cancer genetic counseling to identify individuals with such problems.

Highlights

One of the main messages of studies on the psychosocial impact of genetic counseling for cancer is that, after the process of genetic counseling and risk assessment has been completed, distress levels for the majority of counselees return to or are even lower than baseline levels [1,2,3]
We report on a study of the prevalence of cancer genetic counseling-specific psychosocial problems and their association with more generalized distress as assessed by the Hospital Anxiety and Depression Scale (HADS) and the Distress Thermometer (DT)
We investigated whether sociodemographic and clinical variables are associated significantly with psychosocial problems and psychological distress experienced during cancer genetic counseling

Summary

Introduction

One of the main messages of studies on the psychosocial impact of genetic counseling for cancer is that, after the process of genetic counseling and risk assessment has been completed, distress levels for the majority of counselees return to or are even lower than baseline levels [1,2,3]. The psychosocial impact of genetic counseling is most frequently measured with the Hospital Anxiety and Depression scale (HADS), the State Trait Anxiety Inventory, the Impact of Event Scale, or the Center for Epidemiological Studies Depression Scale [5,6,7]. These questionnaires may be too generic to capture the entire spectrum of psychosocial issues relevant to the cancer genetic setting [8]. Vadaparampil et al [7] recommend inquiring routinely about previous contacts with psychosocial caregivers as a means of identifying counselees potentially in need of such services

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