Hereditary colorectal cancer syndrome, such as FAP or LS, is actually a family disease. The identification of a family-specific genetic defect can affect the entire family identity. The passing of the diseased gene from one generation to another is a devastating event for most families. This occurrence can drastically change the lives of an individual as well as his/her extended family.
In addition, family dynamics play a major role in how at-risk individuals cope with the threat of an inherited cancer condition. The diagnosis of hereditary colorectal cancer can create a crisis in a family. An individual’s perception of the threat of genetic defect can precipitate denial, anxiety, anger, guilt and profound depression. These reactions may impede successful resolution and adaptation to the genetic disorder.
Scientific advances in the past two decades have offered high-risk members of hereditary colorectal cancer families the chance to discover whether they carry a disease-causing genetic mutation well before they develop any symptom. Individuals found to have a cancer-predisposing mutation can reduce their cancer risk by available medical measures including regular surveillance and, in suitable case, preventive surgeries. Despite the potential medical benefits, the availability of genetic testing for cancer susceptibility raises the concerns about the psychological and behavioral impact following disclosure of cancer risk information.
With the help of academics from the University of Hong Kong, the Registry had conducted a number of studies over the years to shed light on the psychosocial reaction of our recruits to their hereditary predisposition, factors affecting their decision regarding genetic testing and their adaptation to their genetic testing results.
Published studies to date include:
From our qualitative study, we found that Chinese culture has important influence on our recruits’ adjustment to hereditary colorectal cancer.
All along, the Chinese consider cancer as a curse. The inheritance of cancer from one generation to another has been regarded as a family curse. In our qualitative interview with the four syndrome patients, we detected a strong influence of this concept in the initial phase of these individuals’ illness experience. For example, hereditary colorectal cancer was regarded by one recruit as a curse due to improper burial of the ancestors.
However, with time, these recruits were able to dispel such “family curse” and turned the curse into a more welcomed “blessing” with the help of Buddhist philosophical ideas including: accepting and finding meaning in suffering; accepting the unpredictability of life; embracing the virtue of perseverance; being virtuous and helping others; letting go; and growth through pain. Using these philosophical ideas, our recruits were transformed and were able to change their views on life and death toward more positive ways.
Although hereditary colorectal cancer is a family issue, there may be a tendency for our recruits to avoid sharing their emotional turmoil with their family members, not because they think that the other family members are unsupportive, but because they do not want to impose burdens and sufferings on their loved ones. The opportunity to share one’s emotional reactions towards hereditary colorectal cancer genetic screening without having to worry about burdening the other family members is especially important among the Chinese.
Moreover, Chinese culture plays an important role in decisions relating to genetic testing. In our cross-section questionnaire survey, we found that our Chinese recruits were relationally and interdependently orientated in their decisional consideration process; that is, our recruits were concerned about the well-being and reaction of their significant others even more than their own well-being when they decide whether to receive genetic testing or not.
In our qualitative interview, our subjects expressed anticipatory anxiety before disclosure of genetic testing results. They also expressed their concern regarding informing relatives about their genetic testing results. It was because they regarded hereditary cancer as a family curse and hence disclosure of this condition equated to bringing bad news to the family members.
In our cross-sectional study, we found that subjects with higher perceived cancer risk tended to emphasize more on the negative consequence of learning their test results. We recommend that psychological counseling would help these individuals to cope with their anticipatory anxiety and the subsequent distress if proven to be mutated gene carriers.
Beside, subjects with higher depression level focused more on the harmful consequence of sharing their test results with relatives. Therefore, psychological services to reduce distress among individuals going through genetic testing might be beneficial. Furthermore, we found that subjects who believed that cancer was due to bad luck or fate (uncontrollable factors) rather than personal factors (such as stress) tended to focus more on the positive aspects of sharing their results with relatives.
In our longitudinal study of psychological outcome of genetic testing recipients up to 12 months after result disclosure, we found that majority (more than 65%) of tested individuals were psychologically resilient; that is, these individuals exhibited little or no depression and anxiety from pre-disclosure baseline up to one year after result disclosure.
More importantly, we found that baseline level of hope was a significant predictor of resilient outcome for both anxiety and depression. This result remained the same after controlling for demographic data, medical information and baseline level of mood status of the study participants.
We believe that high-hope individuals, when confronted with an adverse event such as a family diagnosis of hereditary colorectal cancer, are better able to reprioritize their goals in life, better able to generate alternative ideas about how to achieve their goals and have higher levels of motivation to actualize alternative pathways to their goals.
The good news is that hope-based training is now available to increase an individual’s level of hopefulness. Hope-based training can be incorporated into genetic counseling programmes and such training would be beneficial to the psychological adjustment of hereditary colorectal cancer genetic testing recipients.
Based on the findings of our research, the Registry has developed the following psychosocial support initiatives for our recruits: