Introduction: Improvements in the delivery of intensive care have led to a growing number of children with chronic medical conditions at significant risk of recurrent and prolonged critical illness. These patients are increasingly described as having pediatric chronic critical illness (CCI). To date, pediatric CCI is without an accepted consensus case definition. Objective: To evaluate how pediatric CCI has been defined in the current literature, including the concept of prolonged PICU admission, and describe the methodologies used to develop any existing definitions. Secondary aims included describing patient characteristics and outcomes evaluated in included studies. Methods: We searched four electronic databases for studies evaluating children identified with “CCI.” We also searched for studies describing prolonged PICU admission, as this concept is related to pediatric CCI. We developed a hybrid crowdsourcing and machine-learning (ML) methodology to complete citation screening. Screening and data abstraction were performed by two reviewers, independently and in duplicate. We completed data abstraction including details of population definitions, demographic and clinical characteristics of children with CCI, and outcomes evaluated. Results: Twenty-eight reviewers from 11 countries performed citation screening, with a mean sensitivity of 92%. Of 24,729 unique citations assessed for eligibility, 453 full-texts were reviewed and 67 studies were included. Of these, 12 studies (18%) defined CCI, most commonly by a prolonged PICU length of stay (LOS), either in isolation or in addition related to medical complexity patient characteristics and/or readmissions rate. The concept of prolonged PICU admission was defined in an additional 55 (82%) studies by a median of 14 days (range, 1 day-6 weeks). Conclusion: To our knowledge, this scoping review provides the most comprehensive epidemiologic evidence addressing pediatric CCI. Our results suggest a uniform consensus definition is needed in order to advance this emerging and important area of pediatric critical care research. / Thesis / Master of Science (MSc)

No description available.

Base teórica: O avanço no conhecimento e a introdução de tecnologias mais sofisticadas para o cuidado do paciente crítico trouxeram importante incremento na sobrevida deste grande grupo de pacientes. Por outro lado, existe um estrato de pacientes que sobrevivem à condição crítica aguda, porém permanecem dependentes de algum tipo de suporte de manutenção da vida por longos períodos. A doença crítica crônica (DCC) como é conhecida, apesar de descrita desde a década de 80, ainda não possui um critério de definição claro, levando a divergências nos resultados de estudos e prejudicando o avanço em pesquisas que investigam estratégias de tratamento. Objetivo: Avaliar a sobrevida e fatores associados à DCC em uma população de pacientes críticos comparando dois critérios de diagnóstico desta condição. Metodologia: Coorte histórica com avaliação de variáveis clínicas e desfechos durante a internação hospitalar em uma população de doentes críticos de uma única unidade de tratamento intensivo (UTI). Os pacientes foram alocados em três grupos, dois com critérios de DCC definidos por ≥14 ou ≥21 dias de ventilação mecânica (VM) e um terceiro grupo de pacientes críticos agudos (< 14 dias de VM). Recrutamento e alocação foram feitos através de um banco de dados institucional e dos registros hospitalares das internações ocorridas de janeiro de 2007 a dezembro de 2010. Resultados: No período analisado ocorreram 3.023 internações na UTI, 2.783 apresentavam os critérios de inclusão e compuseram a análise final. Em relação ao tempo de VM, 163 pacientes apresentaram ≥14 dias e 89 ≥21 dias. A mortalidade hospitalar e na UTI foi inferior no grupo de pacientes críticos agudos quando comparado com os dois grupos de DCC (≥14 e ≥21 dias de VM) (16.3% versus 55.8% e 58.4% p<0.001; 10.6% versus 47.3% e 53.9% p<0.001 respectivamente). Quando comparados os dois grupos de DCC (≥14 e ≥21 dias de VM), não houve diferença estatisticamente significativa para mortalidade hospitalar e na UTI (57.2% versus 58.4% p=0.5; 39.2% versus 53.9% p=0.18 respectivamente). O pequeno número de pacientes em cada grupo pode ter limitado o poder das análises. Ambos os grupos de DCC tiveram escores de gravidade mais altos, desenvolveram mais complicações na UTI, apresentaram maior tempo de internação hospitalar e mortalidade quando comparados aos críticos agudos. Conclusão: O estudo não mostrou diferença estatisticamente significativa quanto às características e desfechos clínicos entre as duas definições de DCC. Por outro lado, mostrou que os dois grupos de DCC apresentaram desfechos piores quando comparados com os pacientes críticos agudos. Estes resultados justificam o uso do critério de ≥14 dias de VM para a identificação mais precoce dos doentes críticos crônicos. / Theoretical basis: Progress in knowledge and the introduction of more advanced technologies for critical patient care brought about an important increase in the survival of this large group of patients. On the other side, there exists a subset of patients who survive their acute critical illness, but they remain dependent on some kind of life support for long periods. Despite being described since the 1980s, the chronic critical illness (CCI) has still not been clearly defined. This situation led to divergent studies’ results and jeopardized the progress in research focused on treatment strategies for CCI. Objective: To assess the survival and CCI-associated factors in a population of critically ill patients comparing two diagnostic criteria of this condition. Methodology: Historical cohort study assessing clinical variables and outcomes during hospital stay, in a population of critically ill patients of a single intensive care unit (ICU). The patients were divided into three groups, two of these with different criteria of CCI, defined by ≥14 or ≥21 days of mechanical ventilation (MV), and a third group with acutely critically ill patients (less than 14 days of MV). The recruitment and allocation were carried out through an institutional database and medical records of admissions occurred from January 1, 2007 to December 31, 2010. Results: In the study period 3,023 ICU admissions occurred, 2,783 met the inclusion criteria and made part of the final analysis. As far as MV days are concerned, 163 patients had ≥14 days and 89 ≥21 days. Hospital and ICU mortality were lower in the group of acutely critically ill patients compared with the two CCI groups (≥14 days and ≥21 MV days) (16.3% versus 55.8% and 58.4% p<0.001; 10.6% versus 47.3% and 53.9% p<0.001 respectively). The comparative analysis between the two CCI groups (≥14 days and ≥21 MV days, respectively) was not statistically significant for hospital and ICU mortality (57.2% versus 58.4% p=0.5; 39.2% versus 53.9% p=0.18, respectively). The small number of patients in the two groups may have limited the power of analyzes. Both CCI groups had higher severity scores, developed more ICU complications, showed higher hospital length of stay and mortality when compared with the acutely critically ill patients. Conclusion: This study did not show significant difference between the two CCI definitions regarding characteristics and clinical outcomes. However, it showed that both groups had worse outcomes when compared with the acutely critically ill patients. This result justifies the use of the CCI criteria of ≥14 days of MV for earlier identification of this subset of patients.

Base teórica: O avanço no conhecimento e a introdução de tecnologias mais sofisticadas para o cuidado do paciente crítico trouxeram importante incremento na sobrevida deste grande grupo de pacientes. Por outro lado, existe um estrato de pacientes que sobrevivem à condição crítica aguda, porém permanecem dependentes de algum tipo de suporte de manutenção da vida por longos períodos. A doença crítica crônica (DCC) como é conhecida, apesar de descrita desde a década de 80, ainda não possui um critério de definição claro, levando a divergências nos resultados de estudos e prejudicando o avanço em pesquisas que investigam estratégias de tratamento. Objetivo: Avaliar a sobrevida e fatores associados à DCC em uma população de pacientes críticos comparando dois critérios de diagnóstico desta condição. Metodologia: Coorte histórica com avaliação de variáveis clínicas e desfechos durante a internação hospitalar em uma população de doentes críticos de uma única unidade de tratamento intensivo (UTI). Os pacientes foram alocados em três grupos, dois com critérios de DCC definidos por ≥14 ou ≥21 dias de ventilação mecânica (VM) e um terceiro grupo de pacientes críticos agudos (< 14 dias de VM). Recrutamento e alocação foram feitos através de um banco de dados institucional e dos registros hospitalares das internações ocorridas de janeiro de 2007 a dezembro de 2010. Resultados: No período analisado ocorreram 3.023 internações na UTI, 2.783 apresentavam os critérios de inclusão e compuseram a análise final. Em relação ao tempo de VM, 163 pacientes apresentaram ≥14 dias e 89 ≥21 dias. A mortalidade hospitalar e na UTI foi inferior no grupo de pacientes críticos agudos quando comparado com os dois grupos de DCC (≥14 e ≥21 dias de VM) (16.3% versus 55.8% e 58.4% p<0.001; 10.6% versus 47.3% e 53.9% p<0.001 respectivamente). Quando comparados os dois grupos de DCC (≥14 e ≥21 dias de VM), não houve diferença estatisticamente significativa para mortalidade hospitalar e na UTI (57.2% versus 58.4% p=0.5; 39.2% versus 53.9% p=0.18 respectivamente). O pequeno número de pacientes em cada grupo pode ter limitado o poder das análises. Ambos os grupos de DCC tiveram escores de gravidade mais altos, desenvolveram mais complicações na UTI, apresentaram maior tempo de internação hospitalar e mortalidade quando comparados aos críticos agudos. Conclusão: O estudo não mostrou diferença estatisticamente significativa quanto às características e desfechos clínicos entre as duas definições de DCC. Por outro lado, mostrou que os dois grupos de DCC apresentaram desfechos piores quando comparados com os pacientes críticos agudos. Estes resultados justificam o uso do critério de ≥14 dias de VM para a identificação mais precoce dos doentes críticos crônicos. / Theoretical basis: Progress in knowledge and the introduction of more advanced technologies for critical patient care brought about an important increase in the survival of this large group of patients. On the other side, there exists a subset of patients who survive their acute critical illness, but they remain dependent on some kind of life support for long periods. Despite being described since the 1980s, the chronic critical illness (CCI) has still not been clearly defined. This situation led to divergent studies’ results and jeopardized the progress in research focused on treatment strategies for CCI. Objective: To assess the survival and CCI-associated factors in a population of critically ill patients comparing two diagnostic criteria of this condition. Methodology: Historical cohort study assessing clinical variables and outcomes during hospital stay, in a population of critically ill patients of a single intensive care unit (ICU). The patients were divided into three groups, two of these with different criteria of CCI, defined by ≥14 or ≥21 days of mechanical ventilation (MV), and a third group with acutely critically ill patients (less than 14 days of MV). The recruitment and allocation were carried out through an institutional database and medical records of admissions occurred from January 1, 2007 to December 31, 2010. Results: In the study period 3,023 ICU admissions occurred, 2,783 met the inclusion criteria and made part of the final analysis. As far as MV days are concerned, 163 patients had ≥14 days and 89 ≥21 days. Hospital and ICU mortality were lower in the group of acutely critically ill patients compared with the two CCI groups (≥14 days and ≥21 MV days) (16.3% versus 55.8% and 58.4% p<0.001; 10.6% versus 47.3% and 53.9% p<0.001 respectively). The comparative analysis between the two CCI groups (≥14 days and ≥21 MV days, respectively) was not statistically significant for hospital and ICU mortality (57.2% versus 58.4% p=0.5; 39.2% versus 53.9% p=0.18, respectively). The small number of patients in the two groups may have limited the power of analyzes. Both CCI groups had higher severity scores, developed more ICU complications, showed higher hospital length of stay and mortality when compared with the acutely critically ill patients. Conclusion: This study did not show significant difference between the two CCI definitions regarding characteristics and clinical outcomes. However, it showed that both groups had worse outcomes when compared with the acutely critically ill patients. This result justifies the use of the CCI criteria of ≥14 days of MV for earlier identification of this subset of patients.

Base teórica: O avanço no conhecimento e a introdução de tecnologias mais sofisticadas para o cuidado do paciente crítico trouxeram importante incremento na sobrevida deste grande grupo de pacientes. Por outro lado, existe um estrato de pacientes que sobrevivem à condição crítica aguda, porém permanecem dependentes de algum tipo de suporte de manutenção da vida por longos períodos. A doença crítica crônica (DCC) como é conhecida, apesar de descrita desde a década de 80, ainda não possui um critério de definição claro, levando a divergências nos resultados de estudos e prejudicando o avanço em pesquisas que investigam estratégias de tratamento. Objetivo: Avaliar a sobrevida e fatores associados à DCC em uma população de pacientes críticos comparando dois critérios de diagnóstico desta condição. Metodologia: Coorte histórica com avaliação de variáveis clínicas e desfechos durante a internação hospitalar em uma população de doentes críticos de uma única unidade de tratamento intensivo (UTI). Os pacientes foram alocados em três grupos, dois com critérios de DCC definidos por ≥14 ou ≥21 dias de ventilação mecânica (VM) e um terceiro grupo de pacientes críticos agudos (< 14 dias de VM). Recrutamento e alocação foram feitos através de um banco de dados institucional e dos registros hospitalares das internações ocorridas de janeiro de 2007 a dezembro de 2010. Resultados: No período analisado ocorreram 3.023 internações na UTI, 2.783 apresentavam os critérios de inclusão e compuseram a análise final. Em relação ao tempo de VM, 163 pacientes apresentaram ≥14 dias e 89 ≥21 dias. A mortalidade hospitalar e na UTI foi inferior no grupo de pacientes críticos agudos quando comparado com os dois grupos de DCC (≥14 e ≥21 dias de VM) (16.3% versus 55.8% e 58.4% p<0.001; 10.6% versus 47.3% e 53.9% p<0.001 respectivamente). Quando comparados os dois grupos de DCC (≥14 e ≥21 dias de VM), não houve diferença estatisticamente significativa para mortalidade hospitalar e na UTI (57.2% versus 58.4% p=0.5; 39.2% versus 53.9% p=0.18 respectivamente). O pequeno número de pacientes em cada grupo pode ter limitado o poder das análises. Ambos os grupos de DCC tiveram escores de gravidade mais altos, desenvolveram mais complicações na UTI, apresentaram maior tempo de internação hospitalar e mortalidade quando comparados aos críticos agudos. Conclusão: O estudo não mostrou diferença estatisticamente significativa quanto às características e desfechos clínicos entre as duas definições de DCC. Por outro lado, mostrou que os dois grupos de DCC apresentaram desfechos piores quando comparados com os pacientes críticos agudos. Estes resultados justificam o uso do critério de ≥14 dias de VM para a identificação mais precoce dos doentes críticos crônicos. / Theoretical basis: Progress in knowledge and the introduction of more advanced technologies for critical patient care brought about an important increase in the survival of this large group of patients. On the other side, there exists a subset of patients who survive their acute critical illness, but they remain dependent on some kind of life support for long periods. Despite being described since the 1980s, the chronic critical illness (CCI) has still not been clearly defined. This situation led to divergent studies’ results and jeopardized the progress in research focused on treatment strategies for CCI. Objective: To assess the survival and CCI-associated factors in a population of critically ill patients comparing two diagnostic criteria of this condition. Methodology: Historical cohort study assessing clinical variables and outcomes during hospital stay, in a population of critically ill patients of a single intensive care unit (ICU). The patients were divided into three groups, two of these with different criteria of CCI, defined by ≥14 or ≥21 days of mechanical ventilation (MV), and a third group with acutely critically ill patients (less than 14 days of MV). The recruitment and allocation were carried out through an institutional database and medical records of admissions occurred from January 1, 2007 to December 31, 2010. Results: In the study period 3,023 ICU admissions occurred, 2,783 met the inclusion criteria and made part of the final analysis. As far as MV days are concerned, 163 patients had ≥14 days and 89 ≥21 days. Hospital and ICU mortality were lower in the group of acutely critically ill patients compared with the two CCI groups (≥14 days and ≥21 MV days) (16.3% versus 55.8% and 58.4% p<0.001; 10.6% versus 47.3% and 53.9% p<0.001 respectively). The comparative analysis between the two CCI groups (≥14 days and ≥21 MV days, respectively) was not statistically significant for hospital and ICU mortality (57.2% versus 58.4% p=0.5; 39.2% versus 53.9% p=0.18, respectively). The small number of patients in the two groups may have limited the power of analyzes. Both CCI groups had higher severity scores, developed more ICU complications, showed higher hospital length of stay and mortality when compared with the acutely critically ill patients. Conclusion: This study did not show significant difference between the two CCI definitions regarding characteristics and clinical outcomes. However, it showed that both groups had worse outcomes when compared with the acutely critically ill patients. This result justifies the use of the CCI criteria of ≥14 days of MV for earlier identification of this subset of patients.

Background Fatigue often occurs as long-term complication in chronically critically ill (CCI) patients after prolonged intensive care treatment. The Multidimensional Fatigue Inventory (MFI-20) has been established as valid instrument to measure fatigue in a wide range of medical illnesses. Regarding the measurement of fatigue in CCI patients, the psychometric properties of the MFI-20 have not been investigated so far. Thus, the present study examines reliability and validity of the MFI-20 in CCI patients. Methods A convenience sample of n = 195 patients with Critical Illness Polyneuropathy (CIP) or Myopathy (CIM) were recruited via personal contact within four weeks (t1) following the transfer from acute care ICU to post-acute ICU at a large rehabilitation hospital. N = 113 (median age 61.1 yrs., 72.6% men) patients were again contacted via telephone three (t2) and six (t3) months following the transfer to post-acute ICU. The MFI-20, the Euro-Quality of Life (EQ-5D-3 L) and the Structured Clinical Interview for the Diagnostic and Statistical Manual of mental disorders DSM-IV (SCID-I) were applied within this prospective cohort study. Results The internal consistency Cronbach’s α was adequate for the MFI-total and all but the subscale Reduced Motivation (RM) (range: .50–.91). Item-to-total correlations (range: .22–.80) indicated item redundancy for the subscale RM. Confirmatory Factor analyses (CFAs) revealed poor model fit for the original 5-factor model of the MFI-20 (t2/t3, Confirmatory Fit Index, CFI = .783/ .834; Tucker-Lewis Index, TLI = .751/ .809; Root Mean Square Error of Approximation, RMSEA = .112/ .103). Among the alternative models (1-, 2-, 3-factor models), the data best fit to a 3-factor solution summarizing the highly correlated factors General −/ Physical Fatigue/ Reduced Activity (GF/ PF/ RA) (t2/ t3, CFI = .878/ .896, TLI = .846/ .869, RMSEA = .089/ .085, 90% Confidence Interval .073–.104/ .066–.104). The MFI-total score significantly correlated with the health-related quality of life (range: −.65-(−).66) and the diagnosis of major depression (range: .27–.37). Conclusions In the present sample of CCI patients, a reliable and valid factor structure of the MFI-20 could not be ascertained. Especially the subscale RM should be revised. Since the factors GF, PF and RA cannot be separated from each other and the unclear factorial structure in the present sample of CCI patients, the MFI-20 is not recommended for use in this context.

BACKGROUND: Prolonged mechanical ventilation for acute medical conditions increases the risk of chronic critical illness (CCI). Close family members are confronted with the life-threatening condition of the CCI patients and are prone to develop posttraumatic stress disorder affecting their health-related quality of life (HRQL). Main aim of the present study was to investigate patient- and family-related risk factors for posttraumatic stress and decreased HRQL in family members of CCI patients. METHODS: In a cross-sectional design nested within a prospective longitudinal cohort study, posttraumatic stress symptoms and quality of life were assessed in family members of CCI patients (n = 83, aged between 18 and 72 years) up to 6 months after transfer from ICU at acute care hospital to post-acute rehabilitation. Patients admitted a large rehabilitation hospital for ventilator weaning. The Posttraumatic Stress Scale-10 and the Euro-Quality of life-5D-3L were applied in both patients and their family members via telephone interview. RESULTS: A significant proportion of CCI patients and their family members (14.5 and 15.7 %, respectively) showed clinically relevant scores of posttraumatic stress. Both CCI patients and family members reported poorer HRQL than a normative sample. Factors independently associated with posttraumatic stress in family members were the time following ICU discharge (β = .256, 95 % confidence interval .053-.470) and the patients\' diagnosis of PTSD (β = .264, 95 % confidence interval .045-.453). Perceived satisfaction with the relationship turned out to be a protective factor for posttraumatic stress in family members of CCI patients (β = -.231, 95 % confidence interval -.423 to -.015). Regarding HRQL in family members, patients\' acute posttraumatic stress at ICU (β = -.290, 95 % confidence interval -.360 to -.088) and their own posttraumatic stress 3 to 6 months post-transfer (β = -.622, 95 % confidence interval -.640 to -.358) turned out to be significant predictors. CONCLUSIONS: Posttraumatic stress and HRQL should be routinely assessed in family members of CCI patients at regular intervals starting early at ICU. Preventive family-centered interventions are needed to improve posttraumatic stress and HRQL in both patients and their family members.

BACKGROUND: Prolonged mechanical ventilation for acute medical conditions increases the risk of chronic critical illness (CCI). Close family members are confronted with the life-threatening condition of the CCI patients and are prone to develop posttraumatic stress disorder affecting their health-related quality of life (HRQL). Main aim of the present study was to investigate patient- and family-related risk factors for posttraumatic stress and decreased HRQL in family members of CCI patients. METHODS: In a cross-sectional design nested within a prospective longitudinal cohort study, posttraumatic stress symptoms and quality of life were assessed in family members of CCI patients (n = 83, aged between 18 and 72 years) up to 6 months after transfer from ICU at acute care hospital to post-acute rehabilitation. Patients admitted a large rehabilitation hospital for ventilator weaning. The Posttraumatic Stress Scale-10 and the Euro-Quality of life-5D-3L were applied in both patients and their family members via telephone interview. RESULTS: A significant proportion of CCI patients and their family members (14.5 and 15.7 %, respectively) showed clinically relevant scores of posttraumatic stress. Both CCI patients and family members reported poorer HRQL than a normative sample. Factors independently associated with posttraumatic stress in family members were the time following ICU discharge (β = .256, 95 % confidence interval .053-.470) and the patients\' diagnosis of PTSD (β = .264, 95 % confidence interval .045-.453). Perceived satisfaction with the relationship turned out to be a protective factor for posttraumatic stress in family members of CCI patients (β = -.231, 95 % confidence interval -.423 to -.015). Regarding HRQL in family members, patients\' acute posttraumatic stress at ICU (β = -.290, 95 % confidence interval -.360 to -.088) and their own posttraumatic stress 3 to 6 months post-transfer (β = -.622, 95 % confidence interval -.640 to -.358) turned out to be significant predictors. CONCLUSIONS: Posttraumatic stress and HRQL should be routinely assessed in family members of CCI patients at regular intervals starting early at ICU. Preventive family-centered interventions are needed to improve posttraumatic stress and HRQL in both patients and their family members.

Background Fatigue often occurs as long-term complication in chronically critically ill (CCI) patients after prolonged intensive care treatment. The Multidimensional Fatigue Inventory (MFI-20) has been established as valid instrument to measure fatigue in a wide range of medical illnesses. Regarding the measurement of fatigue in CCI patients, the psychometric properties of the MFI-20 have not been investigated so far. Thus, the present study examines reliability and validity of the MFI-20 in CCI patients. Methods A convenience sample of n = 195 patients with Critical Illness Polyneuropathy (CIP) or Myopathy (CIM) were recruited via personal contact within four weeks (t1) following the transfer from acute care ICU to post-acute ICU at a large rehabilitation hospital. N = 113 (median age 61.1 yrs., 72.6% men) patients were again contacted via telephone three (t2) and six (t3) months following the transfer to post-acute ICU. The MFI-20, the Euro-Quality of Life (EQ-5D-3 L) and the Structured Clinical Interview for the Diagnostic and Statistical Manual of mental disorders DSM-IV (SCID-I) were applied within this prospective cohort study. Results The internal consistency Cronbach’s α was adequate for the MFI-total and all but the subscale Reduced Motivation (RM) (range: .50–.91). Item-to-total correlations (range: .22–.80) indicated item redundancy for the subscale RM. Confirmatory Factor analyses (CFAs) revealed poor model fit for the original 5-factor model of the MFI-20 (t2/t3, Confirmatory Fit Index, CFI = .783/ .834; Tucker-Lewis Index, TLI = .751/ .809; Root Mean Square Error of Approximation, RMSEA = .112/ .103). Among the alternative models (1-, 2-, 3-factor models), the data best fit to a 3-factor solution summarizing the highly correlated factors General −/ Physical Fatigue/ Reduced Activity (GF/ PF/ RA) (t2/ t3, CFI = .878/ .896, TLI = .846/ .869, RMSEA = .089/ .085, 90% Confidence Interval .073–.104/ .066–.104). The MFI-total score significantly correlated with the health-related quality of life (range: −.65-(−).66) and the diagnosis of major depression (range: .27–.37). Conclusions In the present sample of CCI patients, a reliable and valid factor structure of the MFI-20 could not be ascertained. Especially the subscale RM should be revised. Since the factors GF, PF and RA cannot be separated from each other and the unclear factorial structure in the present sample of CCI patients, the MFI-20 is not recommended for use in this context.