A pilot study of posttraumatic stress and nonadherence in pediatric liver transplant recipients

Background. Symptoms of posttraumatic stress disorder (PTSD) were described in survivors of life-threatening diseases, the trauma being the experience s associated with the disease or its treatment. Their prevalence in liver t ransplant recipients is unknown. Based on clinical observations, we hypothe size that a significant proportion of pediatric liver transplant recipients suffers from PTSD symptoms. We further hypothesize that nonadherence (nonc ompliance) to medical management may, in some cases, be associated with the se symptoms. Traumatized patients, according to this hypothesis, will avoid taking their medications, because these serve as painful reminders of the disease. Objectives. To determine the prevalence of PTSD symptoms in a sample of ped iatric liver transplant recipients. To determine whether symptoms of PTSD a re associated with nonadherence in these patients. To describe the clinical presentation of PTSD and the management of severe nonadherence in patients who suffer from this disorder. Methods. Nineteen pediatric liver transplant recipients and their caretaker s were interviewed, using the UCLA Post Traumatic Stress Disorder Reaction Index (PTSRI). Data were obtained on a few demographic parameters and perce ption of disease threat. Adherence was evaluated by 2 methods: 1) a clinici an panel (taking into account the clinical sequelae of severe nonadherence) ; and 2) computation of the standard deviations (SDs) of consecutive determ inations of blood levels of Tacrolimus (a higher SD means higher variabilit y between individual measures and is therefore an indicator of nonadherence ). As an illustration of the general phenomenon, we describe 3 cases of liv er transplant recipients who were nonadherent and who suffered from PTSD. Results. Six of 19 patients had positive scores on all 3 components of the PTSRI (PTSD patients). Three of these, and none of the others, were conside red significantly nonadherent by the panel. Therefore, nonadherence was sig nificantly associated with the existence of symptoms from all 3 domains of PTSD (Fisher's exact test) in our sample. In particular, a high avoidance s core on the PTSRI was highly correlated with panel-determined nonadherence. Further, SD of medication levels were significantly higher in PTSD patient s, compared with the rest of our sample. No significant differences were fo und in perception of disease threat or demographic variables between PTSD p atients and the rest of our sample. The 3 cases that we describe became adh erent to their medications when symptoms of PTSD subsided during the course of therapy. Conclusions. Clinically significant nonadherence, determined by 2 different methods, was associated with the full spectrum of PTSD symptoms in this sa mple. It was especially associated with a high avoidance score, which sugge sts that avoidance of reminders of the disease (eg, medications) may be a m echanism of nonadherence. Screening for and management of these symptoms, t herefore, may improve adherence. This novel concept may be applicable to ot her patient populations. However, more data are needed before any definite conclusions can be drawn.