The invisible patients: posttraumatic stress disorder in parents of individuals with cystic fibrosis

Background: Besides the growing acknowledgment of the relevance of posttraumatic stress disorder (PTSD) related to medical illness, there is no study in cystic fibrosis yet. Objective: To assess the prevalence of PTSD and the three clusters of posttraumatic stress symptoms (PTSS) in parents of patients with cystic fibrosis. Methods: Parents of patients with cystic fibrosis (age range: 2 to 33 years) were drawn from the Cystic Fibrosis Association of the city of Rio de Janeiro. In this cross-sectional study, parents were asked to fulfill a questionnaire for social and demographic characteristics and were interviewed by means of the PTSD module of the Structured Clinical Interview for DSM-IV. Results: The sample comprised 62 subjects (46 mothers and 16 fathers). Current prevalence for full PTSD was 6.5% and that for partial PTSD was 19.4%. Parents with and without PTSS differed significantly in two psychosocial aspects: the former reported more emotional problems (p = 0.001); and acknowledged more often the need for psychological or psychiatric interventions (p = 0.002) than the latter. However, only 6.3% of the parents with PTSS were in psychological/psychiatric treatment. Discussion: This preliminary study showed that the frequency of PTSD symptoms is fairly high among parents of patients with cystic fibrosis, and although these parents recognize they have emotional problems and need psychological/psychiatric treatment, their suffering remains "invisible" to the medical system, leading to underdiagnosis and undertreatment.