Family Outcomes After the Pediatric Intensive Care Unit: A Scoping Review

Background: Intensivists are increasingly attuned to the post-discharge outcomes experienced by families because patient recovery and family outcomes are interdependent after childhood critical illness. In this scoping review of international contemporary literature, we describe the evidence of family effects and functioning post-PICU as well as outcome measures used in order to identify strengths and weaknesses in the literature.Methods: We reviewed all articles published between 1970 and 2017 in PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature (CINAHL), or the Cochrane Controlled Trials Registry. Our search used a combination of terms for the concept of “critical care/illness” combined with additional terms for the pre-specified domains of social, cognitive, emotional, physical, health-related quality of life (HRQL), and family functioning.Results: We identified 71 articles reporting on the post-PICU experience of more than 2,400 parents and 3,600 families of PICU survivors in 8 countries. These articles used 101 different metrics to assess the various aspects of family outcomes; 34 articles also included open-ended interviews. Overall, most families experienced significant disruption in at least 5 out of 6 of our family outcomes subdomains, with themes of decline in mental health, physical health, family cohesion, and family finances identified. Almost all articles represented relatively small, single-center or disease-specific observational studies. There was disproportionate representation of families of higher socioeconomic status and Caucasian race, and there was much more data about mothers compared to fathers. There was also very limited information regarding outcomes for siblings and extended family members after a child’s PICU stay. Conclusions: Significant opportunities remain for research exploring family functioning after PICU discharge. We recommend that future work include more diverse populations with respect to the critically ill child as well as family characteristics, include more intervention studies, and enrich existing knowledge about outcomes for siblings and extended family

Acute stress in parents of patients admitted to the pediatric intensive care unit: A two-center cross-sectional observational study

Objective: To examine medical and psychosocial risk factors associated with the development of acute stress in parents of patients unexpectedly admitted to the PICU.Design: Cross-sectional observational study.Setting: Two tertiary care children\u27s hospitals with mixed medical/surgical/cardiac PICU.Patients: Parents of patients unexpectedly admitted to the PICU.Intervention: None.Measurements and main results: 265 parents of 188 children were enrolled of whom 49 parents (18%) met ASD qualification and 108 (41%) parents developed ASD symptoms as determined by the ASDS-5 scale. Risk factors making parents likely to meet ASD qualification include parents from area served by Penn State (p \u3c 0.001), prior psychiatric illness (p \u3c 0.01), and female gender (p \u3c 0.05), while graduating college was protective (p \u3c 0.05). In the multivariate analysis, parents from area served by Penn State (OR 3.00 (1.49-6.05) p \u3c 0.01) and parents with prior psychiatric illness (OR 2.16 (1.03-4.52) p \u3c 0.05) were associated with ASD qualification. Parents who graduated college or had prior medical problems were not significant.Risk factors making parents more likely to develop ASD symptoms (significant symptoms that do not meet ASD qualification) include patients with higher PRISM-III scores (p \u3c 0.01), patients receiving cardiovascular support (p \u3c 0.05), parents with a history of prior physical/sexual abuse (p \u3c 0.01), parental involvement in the past with a major disaster/accident (p \u3c 0.01), a family member admitted to an ICU in the past (p \u3c 0.05) and preexisting parental psychiatric/medical disorders (p \u3c 0.001). In a multivariate analysis, prior parental psychiatric disorder (OR 4.11 (1.80-6.42) p \u3c 0.001), history of parental abuse (OR 3.11 (1.14-5.08) p \u3c 0.05), and parental prior medical problem (OR 2.03 (1.01-3.05) p \u3c 0.05) were associated with the development of ASD symptoms. However, PRISM-III score and prior involvement in major disaster were not significant.Conclusions: A combination of psychosocial parental risk factors and patient factors were associated with acute stress in parents. Further studies evaluating targeted hospital interventions towards parents most at-risk are needed

Pediatric critical care–associated parental traumatic stress: Beyond the first year*

Objectives: Perform a longitudinal analysis of parental traumatic stress up to 30 months after PICU discharge. Design: Prospective observational cohort study. Setting: Two tertiary care children\u27s hospitals with mixed medical/surgical/cardiac PICUs. Subjects: Parents of patients unexpectedly admitted to the PICU. Interventions: None. Measurements and main results: Two hundred sixty-five parents of 188 children were enrolled. Of the 195 parents who completed the 3-9-month assessments, 29 (14.8%) met posttraumatic stress disorder (PTSD) qualification on the PTSD Symptom Scale Interview for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Multivariable analysis showed parents who met acute stress disorder (ASD) qualification (odds ratio [OR] 8.01; 95% CI 2.64-24.3), parents of children with Pediatric Overall Performance Category score of severe or coma at discharge (OR 5.21; 95% CI 1.65-16.4), parents who had concerns for their child\u27s permanent injury (OR 1.82; 95% CI 1.36-2.43), and parents who reported increased knowledge of child illness during admission (OR 1.82; 95% CI 1.13-2.93) had increased odds of developing parental PTSD. Of the 175 parents (66%) who completed the 18-30-month assessments, 22 (12.5%) met PTSD qualification. Multivariable analysis showed parents who met ASD qualification (OR 4.19; 95% CI 1.12-15.7), parents who had a history of a family member or themselves being admitted to ICU (OR 6.51; 95% CI 1.43-29.6), and parents who had concerns of child\u27s susceptibility to death post discharge (OR 1.58; 95% CI 1.19-2.09) had increased odds of developing parental PTSD. At 18-30 months post discharge, parents who met the PTSD qualification were more likely to report a decrease in household income following discharge (OR 9.23; 95% CI 1.71-49.9

A Core Outcome Measurement Set for Pediatric Critical Care

Objectives: To identify a PICU Core Outcome Measurement Set (PICU COMS), a set of measures that can be used to evaluate the PICU Core Outcome Set (PICU COS) domains in PICU patients and their families. Design: A modified Delphi consensus process. Setting: Four webinars attended by PICU physicians and nurses, pediatric surgeons, rehabilitation physicians, and scientists with expertise in PICU clinical care or research (n = 35). Attendees were from eight countries and convened from the Pediatric Acute Lung Injury and Sepsis Investigators Pediatric Outcomes STudies after PICU Investigators and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network PICU COS Investigators. Subjects: Measures to assess outcome domains of the PICU COS are as follows: cognitive, emotional, overall (including health-related quality of life), physical, and family health. Measures evaluating social health were also considered. Interventions: None. Measurements and Main Results: Measures were classified as general or additional based on generalizability across PICU populations, feasibility, and relevance to specific COS domains. Measures with high consensus, defined as 80% agreement for inclusion, were selected for the PICU COMS. Among 140 candidate measures, 24 were delineated as general (broadly applicable) and, of these, 10 achieved consensus for inclusion in the COMS (7 patient-oriented and 3 family-oriented). Six of the seven patient measures were applicable to the broadest range of patients, diagnoses, and developmental abilities. All were validated in pediatric populations and have normative pediatric data. Twenty additional measures focusing on specific populations or in-depth evaluation of a COS subdomain also met consensus for inclusion as COMS additional measures. Conclusions: The PICU COMS delineates measures to evaluate domains in the PICU COS and facilitates comparability across future research studies to characterize PICU survivorship and enable interventional studies to target long-term outcomes after critical illness.</p