The impact of hospital diaries in Posttraumatic Stress Disorder and psychological distress incidence in relatives of critically ill children: an intervention study in Pediatric Intensive Care Units in Rio de Janeiro

More than a third of family members of critically ill children in Pediatric Intensive Care Units (PICU) develop anxiety, depression, and Post Traumatic Stress Disorder (PTSD), with a consequent decrease in quality of life and great social impact. Hence, the term Post- Intensive Family Therapy Syndrome (PICS-F) was created to raise awareness of these complications and define a global research agenda. Data on this theme available in the literature are still scarce and of low quality. After discharge, strategies that minimize these negative outcomes have been adopted in PICUs in different countries. This thesis aimed to evaluate the impact of a hospital diary program on PTSD and psychological distress incidence in family members of critically ill pediatric patients. Between December 2019 and December 2021, we conducted a cluster-randomized, crossover, two-arm, two-period intervention study in four PICUs. Relatives of children aged 29 days to 12 years who were hospitalized in the PICU for more than 36 hours for clinical or surgical reasons were eligible. The use of PICU diaries was compared with standard practice. The diaries were filled in by the health professionals and family members, had photographs inserted, and were handed to family members upon PICU discharge. The primary outcomes were: (a) the incidence of PTSD measured with the PCL-5 instrument (Posttraumatic Stress Disorder Checklist for DSM-5 - Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition); and (b) the incidence of psychological distress measured with the Hospital Anxiety and Depression Score (HADS) instrument. Both outcomes were measured in family members of critically ill children 45 to 60 days after discharge from the PICU. A sensitivity analysis was also performed on adherence to the diary by evaluating its content. A total of 339 participants were analyzed, 170 in the diary group and 169 in the control group. Participant characteristics were similar in the two study groups. The use of diaries decreased an average of 2.57 points in the total PCL-5 score of family members (95% CI -2.58 to -2.57; p<0.001) and an incidence rate ratio (IRR) of 0.60 (95% CI 0.57 to 0.64; p< 0.001), resulting in a 40% reduction in PTSD incidence. Regarding psychological distress, the use of diaries resulted in an IRR of 0.78 (95% CI 0.77 to 0.78). The content analysis of the diaries showed that full adherence was even more impactful than partial adherence to the diaries (IRR 0.68 [CI 95% 0.57 to 0.81] and IRR 0.77 [CI 95% 0. 70 to 0.86], respectively). Therefore, the more complete the diaries, the greater their effect on reducing psychological distress incidence. The results presented in this thesis support the hypothesis that diaries have a protective effect on PTSD and psychological distress in family members of critically ill children and are beneficial in preventing PICS-F.