Parents’ prioritised outcomes for trials investigating treatments for paediatric severe infection: a qualitative synthesis

Woolfall, Kerry; O’Hara, Caitlin B; Deja, Elizabeth; Canter, Ruth R; Khan, Imran; Mouncey, Paul; Carter, Anjali; Jones, Nicola L.; Watkins, Jason; Lyttle, Mark D; Tume, Lyvonne N.; Agbeko, Rachel; Tibby, Shane M.; Pappachan, John; Thorburn, Kent; Rowan, Kathy; Peters, Mark; Inwald, David

doi:10.1136/archdischild-2019-316807

Cited by 13 publications

(11 citation statements)

References 36 publications

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“…In critically ill children, 28–31% of patients with severe sepsis ( 9 , 10 ) and up to 38% of infants undergoing surgery for congenital heart disease ( 11 ) suffer from substantial disability following PICU discharge ( 12 ). Long-term morbidity after critical illness directly affects quality of life in survivors and represents a patient-centered outcome of great relevance to families ( 13 , 14 ).…”

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confidence: 99%

Educational Outcomes of Childhood Survivors of Critical Illness—A Population-Based Linkage Study*

Tomaszewski¹,

Ablaza²,

Straney³

et al. 2022

Critical Care Medicine

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OBJECTIVES: Major postintensive care sequelae affect up to one in three adult survivors of critical illness. Large cohorts on educational outcomes after pediatric intensive care are lacking. We assessed primary school educational outcomes in a statewide cohort of children who survived PICU during childhood. DESIGN: Multicenter population-based study on children less than 5 years admitted to PICU. Using the National Assessment Program—Literacy and Numeracy database, the primary outcome was educational achievement below the National Minimum Standard (NMS) in year 3 of primary school. Cases were compared with controls matched for calendar year, grade, birth cohort, sex, socioeconomic status, Aboriginal and Torres Strait Islander status, and school. Multivariable logistic regression models to predict educational outcomes were derived. SETTING: Tertiary PICUs and mixed ICUs in Queensland, Australia. PATIENTS: Children less than 5 years admitted to PICU between 1998 and 2016. INTERVENTIONS: Not applicable. MEASUREMENTS AND MAIN RESULTS: Year 3 primary school data were available for 5,017 PICU survivors (median age, 8.0 mo at first PICU admission; interquartile range, 1.9–25.2). PICU survivors scored significantly lower than controls across each domain ( p < 0.001); 14.03% of PICU survivors did not meet the NMS compared with 8.96% of matched controls ( p < 0.001). In multivariate analyses, socioeconomic status (odds ratio, 2.14; 95% CI, 1.67–2.74), weight (0.94; 0.90–0.97), logit of Pediatric Index of Mortality-2 score (1.11; 1.03–1.19), presence of a syndrome (11.58; 8.87–15.11), prematurity (1.54; 1.09–2.19), chronic neurologic conditions (4.38; 3.27–5.87), chronic respiratory conditions (1.65; 1.24–2.19), and continuous renal replacement therapy (4.20; 1.40–12.55) were independently associated with a higher risk of not meeting the NMS. CONCLUSIONS: In this population-based study of childhood PICU survivors, 14.03% did not meet NMSs in the standardized primary school assessment. Socioeconomic status, underlying diseases, and severity on presentation allow risk-stratification to identify children most likely to benefit from individual follow-up and support.

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confidence: 99%

Educational Outcomes of Childhood Survivors of Critical Illness—A Population-Based Linkage Study*

Tomaszewski¹,

Ablaza²,

Straney³

et al. 2022

Critical Care Medicine

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“…This is in line with previous surveys. In a survey of 85 parents of children receiving intensive care treatment, the respondents indicated important long-term outcomes such as normal appearance and behavior as well as long-term health and lack of developmental problems in addition to short-term outcomes ( 32 ). In a survey by Merritt et al parents and healthcare professionals were both asked about important outcomes.…”

Section: Discussionmentioning

confidence: 99%

Current Knowledge Regarding Long-Term Consequences of Pediatric Intensive Care: A Staff Survey in Intensive Care Units in German-Speaking Countries

et al. 2022

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BackgroundThe Post Intensive Care Syndrome (PICS) describes new impairments of physical, cognitive, social, or mental health after critical illness. In recent years, prevention and therapy concepts have been developed. However, it is unclear whether and to what extent these concepts are known and implemented in hospitals in German-speaking countries.MethodsWe conducted an anonymous online survey in German-speaking pediatric intensive care units on the current state of knowledge about the long-term consequences of intensive care treatment as well as about already established prevention and therapy measures. The request to participate in the survey was sent to the heads of the PICUs of 98 hospitals.ResultsWe received 98 responses, 54% of the responses came from nurses, 43% from physicians and 3% from psychologist, all working in intensive care. As a main finding, our survey showed that for only 31% of the respondents PICS has an importance in their daily clinical practice. On average, respondents estimated that about 42% of children receiving intensive care were affected by long-term consequences after intensive care. The existence of a follow-up outpatient clinic was mentioned by 14% of the respondents. Frequent reported barriers to providing follow-up clinics were lack of time and staff. Most frequent mentioned core outcome parameters were normal developmental trajectory (59%) and good quality of life (52%).ConclusionOverall, the concept of PICS seems to be underrepresented in German-speaking pediatric intensive care units. It is crucial to expand knowledge on long-term complications after pediatric critical care and to strive for further research through follow-up programs and therewith ultimately improve long-term outcomes.

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“…Secondary outcomes evaluated were the prevalence of any ICU admission, ICU LOS ≥3 days, individual organ support therapies, proven or probable bacterial infection, hospital LOS ≥7 days and 28‐day mortality 14–16 . These outcomes have been identified as important to children, carers and clinicians 15,17 . All outcome data were collected at the end of the FN episode, and on day 30 following ED presentation.…”

Section: Methodsmentioning

confidence: 99%

“…[14][15][16] These outcomes have been identified as important to children, carers and clinicians. 15,17 1). 9,18,19 Clinical data, including vital signs and pathology results, were obtained between 0 and 4 h from the time of ED presentation.…”

Section: Methodsmentioning

confidence: 99%

Prevalence and predictors of poor outcome in children with febrile neutropaenia presenting to the emergency department

Long

Babl

Phillips

et al. 2022

Emerg Medicine Australasia

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Objective Children with acquired neutropaenia due to cancer chemotherapy are at high risk of severe infection. The present study aims to describe the prevalence and predictors of poor outcomes in children with febrile neutropaenia (FN). Methods This is a multicentre, prospective observational study in tertiary Australian EDs. Cancer patients with FN were included. Fever was defined as a single temperature ≥38°C, and neutropaenia was defined as an absolute neutrophil count <1000/mm3. The primary outcome was the ICU admission for organ support therapy (inotropic support, mechanical ventilation, renal replacement therapy, extracorporeal life support). Secondary outcomes were: ICU admission, ICU length of stay (LOS) ≥3 days, proven or probable bacterial infection, hospital LOS ≥7 days and 28‐day mortality. Initial vital signs, biomarkers (including lactate) and clinical sepsis scores, including Systemic Inflammatory Response Syndrome, quick Sequential Organ Failure Assessment and quick Paediatric Logistic Organ Dysfunction‐2 were evaluated as predictors of poor outcomes. Results Between December 2016 and January 2018, 2124 episodes of fever in children with cancer were screened, 547 episodes in 334 children met inclusion criteria. Four episodes resulted in ICU admission for organ support therapy, nine episodes required ICU admission, ICU LOS was ≥3 days in four, hospital LOS was ≥7 days in 153 and two patients died within 28 days. Vital signs, blood tests and clinical sepsis scores, including Systemic Inflammatory Response Syndrome, quick Sequential Organ Failure Assessment and quick Paediatric Logistic Organ Dysfunction‐2, performed poorly as predictors of these outcomes (area under the receiver operating characteristic curve <0.6). Conclusions Very few patients with FN required ICU‐level care. Vital signs, biomarkers and clinical sepsis scores for the prediction of poor outcomes are of limited utility in children with FN.

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Parents’ prioritised outcomes for trials investigating treatments for paediatric severe infection: a qualitative synthesis

Cited by 13 publications

References 36 publications

Educational Outcomes of Childhood Survivors of Critical Illness—A Population-Based Linkage Study*

Educational Outcomes of Childhood Survivors of Critical Illness—A Population-Based Linkage Study*

Current Knowledge Regarding Long-Term Consequences of Pediatric Intensive Care: A Staff Survey in Intensive Care Units in German-Speaking Countries

Prevalence and predictors of poor outcome in children with febrile neutropaenia presenting to the emergency department

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