RESUMO
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.
Assuntos
Cuidados Críticos , Qualidade de Vida , Criança , Humanos , Avaliação de Resultados em Cuidados de Saúde , Consenso , Estado Terminal , Técnica DelphiRESUMO
OBJECTIVES: More children are surviving critical illness but are at risk of residual or new health conditions. An evidence-informed and stakeholder-recommended core outcome set is lacking for pediatric critical care outcomes. Our objective was to create a multinational, multistakeholder-recommended pediatric critical care core outcome set for inclusion in clinical and research programs. DESIGN: A two-round modified Delphi electronic survey was conducted with 333 invited research, clinical, and family/advocate stakeholders. Stakeholders completing the first round were invited to participate in the second. Outcomes scoring greater than 69% "critical" and less than 15% "not important" advanced to round 2 with write-in outcomes considered. The Steering Committee held a virtual consensus conference to determine the final components. SETTING: Multinational survey. PATIENTS: Stakeholder participants from six continents representing clinicians, researchers, and family/advocates. MEASUREMENTS AND MAIN RESULTS: Overall response rates were 75% and 82% for each round. Participants voted on seven Global Domains and 45 Specific Outcomes in round 1, and six Global Domains and 30 Specific Outcomes in round 2. Using overall (three stakeholder groups combined) results, consensus was defined as outcomes scoring greater than 90% "critical" and less than 15% "not important" and were included in the final PICU core outcome set: four Global Domains (Cognitive, Emotional, Physical, and Overall Health) and four Specific Outcomes (Child Health-Related Quality of Life, Pain, Survival, and Communication). Families (n = 21) suggested additional critically important outcomes that did not meet consensus, which were included in the PICU core outcome set-extended. CONCLUSIONS: The PICU core outcome set and PICU core outcome set-extended are multistakeholder-recommended resources for clinical and research programs that seek to improve outcomes for children with critical illness and their families.
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Cuidados Críticos/normas , Unidades de Terapia Intensiva Pediátrica/normas , Adulto , Idoso , Criança , Saúde da Criança/normas , Estado Terminal/psicologia , Estado Terminal/terapia , Técnica Delphi , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Participação dos Interessados , Resultado do Tratamento , Adulto JovemRESUMO
Nationally representative data of 140â000 children in 2-parent households showed that fathers were more likely than mothers to report that a child was in good health and less likely to report the presence of a specific health condition, special health care needs, or unmet health service needs.
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Atitude Frente a Saúde , Pai/psicologia , Nível de Saúde , Mães/psicologia , Adolescente , Criança , Pré-Escolar , Feminino , Inquéritos Epidemiológicos , Humanos , Lactente , MasculinoRESUMO
BACKGROUND: Childhood disability is on the rise and there is a national shortage of pediatric physiatrists in the United States. The 2009 Pediatric Rehabilitation Medicine Practice Survey identified concerns regarding inadequate geographic dispersion of providers, salary inequities, and limited academic competitiveness and external funding for research. OBJECTIVE: To describe the current state of the field of pediatric rehabilitation medicine. DESIGN: Survey of pediatric physiatrists in the United States in 2014 and 2017. SETTING: National. PARTICIPANTS: Pediatric physiatrists INTERVENTIONS: Not applicable. MAIN OUTCOME MEASUREMENTS: Characteristics; clinical activities, responsibilities, and comfort; academic activities; and salaries and productivity. RESULTS: In both 2014 and 2017, the majority of pediatric physiatrists who responded were women (~63%) and worked at an academic teaching hospital (~68%). Pediatric physiatrists most commonly held the title of assistant professor and were overrepresented in the Midwest. Overall, 55.8% of providers felt that access was adequate in their area whereas only 3.7% felt access was adequate across the country. In 2017, 52.5% of pediatric physiatrists participated in research or other scholarly activities with 44.2% reporting having published original research at some point in their careers. The inflation adjusted mean salary in 2014 ($227 360) was not statistically different than in 2017 ($232 634, P = .422). In both years, full professors reported the highest academic full-time salaries. Individuals having at least one leadership title also reported significantly higher average full-time salaries than individuals with no titles. CONCLUSIONS: Although gains have been made in terms of academic competitiveness and engagement in research in pediatric physiatry, there are areas of ongoing concern including large geographic practice variations with associated access to care problems, challenges with recruiting physicians to the field, and salary malalignment within the field of PM&R.
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Mão de Obra em Saúde/estatística & dados numéricos , Fisiatras , Medicina Física e Reabilitação , Médicos , Centros Médicos Acadêmicos , Criança , Feminino , Humanos , Masculino , Pediatria/estatística & dados numéricos , Medicina Física e Reabilitação/estatística & dados numéricos , Salários e Benefícios , Inquéritos e Questionários , Estados UnidosRESUMO
OBJECTIVES: Characterize current practices for PICU-based rehabilitation, and physician perceptions and attitudes, barriers, resources, and outcome assessment in contemporary PICU settings. DESIGN: International, self-administered, quantitative, cross-sectional survey. SETTING: Online survey distributed from March 2017 to April 2017. PATIENTS OR SUBJECTS: Pediatric critical care physicians who subscribed to email distribution lists of the Pediatric Acute Lung Injury and Sepsis Investigators, the Pediatric Neurocritical Care Research Group, or the Prevalence of Acute Critical Neurological Disease in Children: A Global Epidemiological Assessment study group, and visitors to the World Federation of Pediatric Intensive and Critical Care Societies website. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of the 170 subjects who began the survey, 148 completed it. Of those who completed the optional respondent information, most reported working in an academic medical setting and were located in the United States. The main findings were 1) a large majority of PICU physicians reported working in institutions with no guidelines for PICU-based rehabilitation, but expressed interest in developing and implementing such guidelines; 2) despite this lack of guidelines, an overwhelming majority of respondents reported that their current practices would involve consultation of multiple rehabilitation services for each case example provided; 3) PICU physicians believed that additional research evidence is needed to determine efficacy and optimal implementation of PICU-based rehabilitation; 4) PICU physicians reported significant barriers to implementation of PICU-based rehabilitation across centers; and 5) low routine assessment of long-term functional outcomes of PICU patients, although some centers have developed multidisciplinary follow-up programs. CONCLUSIONS: Physicians lack PICU-based rehabilitation guidelines despite great interest and current practices involving a high degree of PICU-based rehabilitation consultation. Data are needed to identify best practices and necessary resources in the delivery of ICU-based multidisciplinary rehabilitation and long-term functional outcomes assessment to optimize recovery of children and families affected by critical illness.
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Atitude do Pessoal de Saúde , Unidades de Terapia Intensiva Pediátrica/organização & administração , Médicos/psicologia , Reabilitação/organização & administração , Cuidados Críticos , Estudos Transversais , Humanos , Guias de Prática Clínica como Assunto , Reabilitação/normas , Estados UnidosRESUMO
OBJECTIVE: s: Few feasibility, safety, and efficacy data exist regarding ICU-based rehabilitative services for children. We hypothesized that early protocolized assessment and therapy would be feasible and safe versus usual care in pediatric neurocritical care patients. DESIGN: Randomized controlled trial. SETTING: Three tertiary care PICUs in the United States. PATIENTS: Fifty-eight children between the ages of 3-17 years with new traumatic or nontraumatic brain insult and expected ICU admission greater than 48 hours. INTERVENTIONS: Early protocolized (consultation of physical therapy, occupational therapy, and speech and language therapy within 72 hr ICU admission, n = 26) or usual care (consultation per treating team, n = 32). MEASUREMENTS AND MAIN RESULTS: Primary outcomes were consultation timing, treatment type, and frequency of deferrals and safety events. Secondary outcomes included patient and family functional and quality of life outcomes at 6 months. Comparing early protocolized (n = 26) and usual care groups (n = 32), physical therapy was consulted during the hospital admission in 26 of 26 versus 28 of 32 subjects (p = 0.062) on day 2.4 ± 0.8 versus 7.7 ± 4.8 (p = 0.001); occupational therapy in 26 of 26 versus 23 of 32 (p = 0.003), on day 2.3 ± 0.6 versus 6.9 ± 4.8 (p = 0.001); and speech and language therapy in 26 of 26 versus 17 of 32 (p = 0.011) on day 2.3 ± 0.7 versus 13.0 ± 10.8 (p = 0.026). More children in the early protocolized group had consults and treatments occur in the ICU versus ward for all three services (all p < 0.001). Eleven sessions were discontinued early: nine during physical therapy and two during occupational therapy, none impacting patient outcome. There were no group differences in functional or quality of life outcomes. CONCLUSIONS: A protocol for early personalized rehabilitation by physical therapy, occupational therapy, and speech and language therapy in pediatric neurocritical care patients could be safely implemented and led to more ICU-based treatment sessions, accelerating the temporal profile and changing composition of interventions versus usual care, but not altering the total dose of rehabilitation.
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Lesões Encefálicas/reabilitação , Estado Terminal/reabilitação , Unidades de Terapia Intensiva Pediátrica/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Adolescente , Criança , Pré-Escolar , Protocolos Clínicos , Feminino , Humanos , Unidades de Terapia Intensiva Pediátrica/normas , Terapia da Linguagem/organização & administração , Masculino , Terapia Ocupacional/organização & administração , Especialidade de Fisioterapia/organização & administração , Encaminhamento e Consulta , Centros de Atenção Terciária , Fatores de Tempo , Tempo para o Tratamento , Estados UnidosRESUMO
OBJECTIVE: To compare health care use and spending in children using vs not using respiratory medical equipment and supplies (RMES). STUDY DESIGN: Cohort study of 20 352 children age 1-18 years continuously enrolled in Medicaid in 2013 from 12 states in the Truven Medicaid MarketScan Database; 7060 children using RMES were propensity score matched with 13 292 without RMES. Home RMES use was identified with Healthcare Common Procedure Coding System and International Classification of Diseases codes. RMES use was regressed on annual per-member-per-year Medicaid payments, adjusting for demographic and clinical characteristics, including underlying respiratory and other complex chronic conditions. RESULTS: Of children requiring RMES, 47% used oxygen, 28% suction, 22% noninvasive positive-pressure ventilation, 17% tracheostomy, 8% ventilator, 5% mechanical in-exsufflator, and 4% high-frequency chest wall oscillator. Most children (93%) using RMES had a chronic condition; 26% had ≥6. The median per-member-per-year payments in matched children with vs without RMES were $24 359 vs $13 949 (P < .001). In adjusted analyses, payment increased significantly (P < .001 for all) with mechanical in-exsufflator (+$2657), tracheostomy (+$6447), suction (+$7341), chest wall oscillator (+$8925), and ventilator (+$20 530). Those increased payments were greater than the increase associated with a coded respiratory chronic condition (+$2709). Hospital and home health care were responsible for the greatest differences in payment (+$3799 and +$3320, respectively) between children with and without RMES. CONCLUSION: The use of RMES is associated with high health care spending, especially with hospital and home health care. Population health initiatives in children may benefit from consideration of RMES in comprehensive risk assessment for health care spending.
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Serviços de Saúde da Criança/provisão & distribuição , Doença Crônica/terapia , Recursos em Saúde/provisão & distribuição , Ventilação não Invasiva/instrumentação , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Adolescente , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Lactente , Masculino , Terapia Respiratória/instrumentação , Estudos Retrospectivos , Estados UnidosAssuntos
Estado Terminal , Deambulação Precoce , Adolescente , Criança , Humanos , Unidades de Terapia Intensiva , Projetos PilotoRESUMO
BACKGROUND: The Management of Myelomeningocele Study was a multicenter, randomized controlled trial that compared prenatal repair with standard postnatal repair for fetal myelomeningocele. OBJECTIVE: We sought to describe the long-term impact on the families of the women who participated and to evaluate how the timing of repair influenced the impact on families and parental stress. STUDY DESIGN: Randomized women completed the 24-item Impact on Family Scale and the 36-item Parenting Stress Index Short Form at 12 and 30 months after delivery. A revised 15-item Impact on Family Scale describing overall impact was also computed. Higher scores reflected more negative impacts or greater stress. In addition, we examined Family Support Scale and Family Resource Scale scores along with various neonatal outcomes. Repeated measures analysis was conducted for each scale and subscale. RESULTS: Of 183 women randomized, 171 women completed the Impact on Family Scale and 172 completed the Parenting Stress Index at both 12 and 30 months. The prenatal surgery group had significantly lower revised 15-item Impact on Family Scale scores as well as familial-social impact subscale scores compared to the postnatal surgery group (P = .02 and .004, respectively). There was no difference in total parental stress between the 2 groups (P = .89) or in any of the Parenting Stress Index Short Form subscales. In addition, walking independently at 30 months and family resources at 12 months were associated with both family impact and parental stress. CONCLUSION: The overall negative family impact of caring for a child with spina bifida, up to 30 months of age, was significantly lower in the prenatal surgery group compared to the postnatal surgery group. Ambulation status and family resources were predictive of impact on family and parental stress.