PTSD from Familial Adenomatous Polyposis Calls for Trauma Counseling

Achieving renown in your surgical field and practicing at a world-class medical center can be a two-edged sword.

Benefits and rewards hardly need enumerating, but on the other side, you tend to get the most complex cases, sometimes at the tail end of a long line of unsuccessful surgical attempts. This often leaves limited options when an earlier, more effective intervention would have spared the patient considerable suffering. In few subspecialties is this as common as in colorectal surgery.

James Church, MD, a colorectal surgeon with Cleveland Clinic for 30 years, sees a particularly heartbreaking example of this in patients with familial adenomatous polyposis (FAP).

Exploring the psychological impact

FAP is rare. Yet rare cases converge on centers such as Cleveland Clinic. Dr. Church has seen many patients with this disease, giving him a unique perspective on the psychological impact of FAP. Dr. Church and Waco psychologist Emma Wood, PhD, decided to investigate the nature of this suffering to anchor their advocacy for providing FAP patients with support beyond surgery.

They constructed an anonymized online survey, which they sent to FAP patients listed in the Familial Adenomatous Polyposis Registry. Among other experiential questions, the survey targeted specific criteria for post traumatic stress disorder (PTSD) identified by the American Psychiatric Association:

1. Re-experiencing symptoms characterizing the original trauma
2. Avoiding trauma-related stimuli after the trauma
3. Negative changes in beliefs and feelings
4. Hyperarousal symptoms

Survey design

Seventy-nine patients completed the survey. Fifty-seven (72.2%) reported some adverse psychosocial impact from FAP, with nine (11.4%) meeting study criteria for PTSD and another eight (10.1%) reporting symptoms indicative of partial PTSD (defined as three out of four responses positive for PTSD). Six of the patients in these latter two groups had considered suicide.

Dr. Wood and Dr. Church presented their results at the 2017 Tripartite Colorectal Surgery Meeting, as a poster of distinction.

Key takeaway

The takeaway is clear: the mental health of patients with FAP needs to be assessed routinely in the same way as their physical health is assessed. If there is an indication of psychosocial distress, and especially if there is a suggestion that PTSD-like symptoms exist, expert counseling should be made available.

“Here at Cleveland Clinic we had enough cases to warrant adding a psychologist trained in the mental health implications of cancer to the Weiss Center. But a typical gastroenterology practice might see just a few cases a year. For these practices, I strongly recommend a referral relationship with a specifically cancer-informed psychotherapist,” Dr. Church says.

Witnessing the PTSD first-hand

He continues, “If the wrong operation was done the wrong way, these patients’ lives are just miserable. I know a young man who was rendered impotent, teenagers with permanent ileostomy bags. Even death from surgical complications can happen with this condition.” He explains that since it is a hereditary disease with a 50/50 risk of manifestation in the child, the parents of FAP victims can carry guilt over passing the underlying mutation on to their child, compounding their suffering over the child’s medical and social issues.

“I’ve noticed that many of the affected families are close, deriving emotional support from family, church and community ties. For all patients, but particularly those who don’t have this network of support, physicians may be the link to their ability to recover and live an emotionally stable life, ” Dr. Church says.

He is quick to add, “We also need to educate counselors about our particular patient population. PTSD is point of the spear, but the majority of these patients develop mental health symptoms that extend beyond this specific condition.”