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An unambiguous description of an experiment, and the subsequent biological observation, is vital for accurate data interpretation. Minimum information guidelines define the fundamental complement of data that can support an unambiguous conclusion based on experimental observations. We present the Minimum Information About Disorder Experiments (MIADE) guidelines to define the parameters required for the wider scientific community to understand the findings of an experiment studying the structural properties of intrinsically disordered regions (IDRs). MIADE guidelines provide recommendations for data producers to describe the results of their experiments at source, for curators to annotate experimental data to community resources and for database developers maintaining community resources to disseminate the data. The MIADE guidelines will improve the interpretability of experimental results for data consumers, facilitate direct data submission, simplify data curation, improve data exchange among repositories and standardize the dissemination of the key metadata on an IDR experiment by IDR data sources.
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Proteínas Intrinsicamente Desordenadas , Proteínas Intrinsicamente Desordenadas/química , Conformação ProteicaRESUMO
The Biological Magnetic Resonance Data Bank (BMRB, https://bmrb.io) is the international open data repository for biomolecular nuclear magnetic resonance (NMR) data. Comprised of both empirical and derived data, BMRB has applications in the study of biomacromolecular structure and dynamics, biomolecular interactions, drug discovery, intrinsically disordered proteins, natural products, biomarkers, and metabolomics. Advances including GHz-class NMR instruments, national and trans-national NMR cyberinfrastructure, hybrid structural biology methods and machine learning are driving increases in the amount, type, and applications of NMR data in the biosciences. BMRB is a Core Archive and member of the World-wide Protein Data Bank (wwPDB).
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Bases de Dados de Compostos Químicos , Espectroscopia de Ressonância Magnética , Bases de Dados de Proteínas , Ressonância Magnética Nuclear Biomolecular , Conformação ProteicaRESUMO
Developments in untargeted nuclear magnetic resonance (NMR) metabolomics enable the profiling of thousands of biological samples. The exploitation of this rich source of information requires a detailed quantification of spectral features. However, the development of a consistent and automatic workflow has been challenging because of extensive signal overlap. To address this challenge, we introduce the software Spectral Automated NMR Decomposition (SAND). SAND follows on from the previous success of time-domain modeling and automatically quantifies entire spectra without manual interaction. The SAND approach uses hybrid optimization with Markov chain Monte Carlo methods, employing subsampling in both time and frequency domains. In particular, SAND randomly divides the time-domain data into training and validation sets to help avoid overfitting. We demonstrate the accuracy of SAND, which provides a correlation of â¼0.9 with ground truth on cases including highly overlapped simulated data sets, a two-compound mixture, and a urine sample spiked with different amounts of a four-compound mixture. We further demonstrate an automated annotation using correlation networks derived from SAND decomposed peaks, and on average, 74% of peaks for each compound can be recovered in single clusters. SAND is available in NMRbox, the cloud computing environment for NMR software hosted by the Network for Advanced NMR (NAN). Since the SAND method uses time-domain subsampling (i.e., random subset of time-domain points), it has the potential to be extended to a higher dimensionality and nonuniformly sampled data.
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Algoritmos , Imageamento por Ressonância Magnética , Espectroscopia de Ressonância Magnética , Software , MetabolômicaRESUMO
BACKGROUND: The National Cancer Institute issued a Request for Information (RFI; NOT-CA-23-007) in October 2022, soliciting input on using and reusing metabolomics data. This RFI aimed to gather input on best practices for metabolomics data storage, management, and use/reuse. AIM OF REVIEW: The nuclear magnetic resonance (NMR) Interest Group within the Metabolomics Association of North America (MANA) prepared a set of recommendations regarding the deposition, archiving, use, and reuse of NMR-based and, to a lesser extent, mass spectrometry (MS)-based metabolomics datasets. These recommendations were built on the collective experiences of metabolomics researchers within MANA who are generating, handling, and analyzing diverse metabolomics datasets spanning experimental (sample handling and preparation, NMR/MS metabolomics data acquisition, processing, and spectral analyses) to computational (automation of spectral processing, univariate and multivariate statistical analysis, metabolite prediction and identification, multi-omics data integration, etc.) studies. KEY SCIENTIFIC CONCEPTS OF REVIEW: We provide a synopsis of our collective view regarding the use and reuse of metabolomics data and articulate several recommendations regarding best practices, which are aimed at encouraging researchers to strengthen efforts toward maximizing the utility of metabolomics data, multi-omics data integration, and enhancing the overall scientific impact of metabolomics studies.
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Imageamento por Ressonância Magnética , Metabolômica , Metabolômica/métodos , Espectroscopia de Ressonância Magnética/métodos , Espectrometria de Massas/métodos , AutomaçãoRESUMO
BACKGROUND: Audit and Feedback (A&F) interventions based on quality indicators have been shown to lead to significant improvements in compliance with evidence-based care including de-adoption of low-value practices (LVPs). Our primary aim was to evaluate the cost-effectiveness of adding a hypothetical A&F module targeting LVPs for trauma admissions to an existing quality assurance intervention targeting high-value care and risk-adjusted outcomes. A secondary aim was to assess how certain A&F characteristics might influence its cost-effectiveness. METHODS: We conducted a cost-effectiveness analysis using a probabilistic static decision analytic model in the Québec trauma care continuum. We considered the Québec Ministry of Health perspective. Our economic evaluation compared a hypothetical scenario in which the A&F module targeting LVPs is implemented in a Canadian provincial trauma quality assurance program to a status quo scenario in which the A&F module is not implemented. In scenarios analyses we assessed the impact of A&F characteristics on its cost-effectiveness. Results are presented in terms of incremental costs per LVP avoided. RESULTS: Results suggest that the implementation of A&F module (Cost = $1,480,850; Number of LVPs = 6,005) is associated with higher costs and higher effectiveness compared to status quo (Cost = $1,124,661; Number of LVPs = 8,228). The A&F module would cost $160 per LVP avoided compared to status quo. The A&F module becomes more cost-effective with the addition of facilitation visits; more frequent evaluation; and when only high-volume trauma centers are considered. CONCLUSION: A&F module targeting LVPs is associated with higher costs and higher effectiveness than status quo and has the potential to be cost-effective if the decision-makers' willingness-to-pay is at least $160 per LVP avoided. This likely represents an underestimate of true ICER due to underestimated costs or missed opportunity costs. Results suggest that virtual facilitation visits, frequent evaluation, and implementing the module in high-volume centers can improve cost-effectiveness.
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Análise de Custo-Efetividade , Hospitalização , Humanos , Análise Custo-Benefício , Retroalimentação , Canadá , Anos de Vida Ajustados por Qualidade de VidaRESUMO
Metal binding by members of the growth hormone (GH) family of hematopoietic cytokines has been a subject of considerable interest. However, beyond appreciation of its role in reversible packing of GH proteins in secretory granules, the molecular mechanisms of metal binding and granule formation remain poorly understood. Here, we investigate metal binding by a GH family member prolactin (PRL) using paramagnetic metal titration and chelation experiments. Cu2+-mediated paramagnetic relaxation enhancement measurements identified two partial metal-binding sites on the opposite faces of PRL composed of residues H30/H180 and E93/H97, respectively. Coordination of metal ions by these two sites causes formation of inter-molecular bridges between the PRL protomers and enables formation of reversible higher aggregates. These findings in vitro suggest a model for reversible packaging of PRL in secretory granules. The proposed mechanism of metal-promoted PRL aggregation lends insight and support to the previously suggested role of metal coordination in secretory granule formation by GH proteins.
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Hormônio do Crescimento , Prolactina , Sítios de Ligação , Grânulos Citoplasmáticos/metabolismo , Hormônio do Crescimento/metabolismo , Prolactina/metabolismo , Proteínas/metabolismoRESUMO
Cost-effectiveness analysis is an essential part of the evaluation of new medical interventions. While in many studies both costs and effectiveness (eg, survival time) are censored, standard survival analysis techniques are often invalid due to the induced dependent censoring problem. We propose methods for censored cost-effectiveness data using the net-benefit regression framework, which allow covariate-adjustment and subgroup identification when comparing two intervention groups. The methods provide a straightforward way to construct cost-effectiveness acceptability curves with censored data. We also propose a more efficient doubly robust estimator of average causal incremental net benefit, which increases the likelihood that the results will represent a valid inference in observational studies. Lastly, we conduct extensive numerical studies to examine the finite-sample performance of the proposed methods, and illustrate the proposed methods with a real data example using both survival time and quality-adjusted survival time as the measures of effectiveness.
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Análise Custo-Benefício , Estudos Observacionais como Assunto , Ensaios Clínicos Controlados Aleatórios como Assunto , Humanos , Probabilidade , Análise de SobrevidaRESUMO
OBJECTIVES: Underuse of high-value clinical practices and overuse of low-value practices are major sources of inefficiencies in modern healthcare systems. To achieve value-based care, guidelines and recommendations should target both underuse and overuse and be supported by evidence from economic evaluations. We aimed to conduct a systematic review of the economic value of in-hospital clinical practices in acute injury care to advance knowledge on value-based care in this patient population. METHODS: Pairs of independent reviewers systematically searched MEDLINE, Embase, Web of Science, and Cochrane Central Register for full economic evaluations of in-hospital clinical practices in acute trauma care published from 2009 to 2019 (last updated on June 17, 2020). Results were converted into incremental net monetary benefit and were summarized with forest plots. The protocol was registered with PROSPERO (CRD42020164494). RESULTS: Of 33 910 unique citations, 75 studies met our inclusion criteria. We identified 62 cost-utility, 8 cost-effectiveness, and 5 cost-minimization studies. Values of incremental net monetary benefit ranged from international dollars -467 000 to international dollars 194 000. Of 114 clinical interventions evaluated (vs comparators), 56 were cost-effective. We identified 15 cost-effective interventions in emergency medicine, 6 in critical care medicine, and 35 in orthopedic medicine. A total of 58 studies were classified as high quality and 17 as moderate quality. From studies with a high level of evidence (randomized controlled trials), 4 interventions were clearly dominant and 8 were dominated. CONCLUSIONS: This research advances knowledge on value-based care for injury admissions. Results suggest that almost half of clinical interventions in acute injury care that have been studied may not be cost-effective.
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Cuidados Críticos , Hospitais , Análise Custo-Benefício , Atenção à Saúde , HumanosRESUMO
OBJECTIVE: The aim of this study was to investigate parent and therapist experience and cost savings from the payer perspective associated with a novel tele-physiatry program for children living in rural and underserved communities. DESIGN: We designed a noninferiority, cluster-randomized crossover study at 4 school-based clinics to evaluate parent experience and perceived quality of care between a telemedicine-based approach in which the physiatrist conducts the visit remotely with an in-person therapist and a traditional in-person physiatrist clinic. SETTING: Four school-based clinics in Northern California. PARTICIPANTS: A total of 268 encounters (124 telemedicine and 144 in-person) were completed by 200 unique patients (N=200). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Parent and therapist experience scores. RESULTS: For parents and therapists, experience and perceived quality of care were high with no significant differences between telemedicine and in-person encounters. For parents whose children received a telemedicine encounter, 40 (54.8%) reported no preference for their child's subsequent encounter, 21 (28.8%) preferred a physiatrist telemedicine visit, and 12 (16.4%) preferred a physiatrist in-person visit. From the payer perspective, costs were $100 higher for in-person clinics owing to physician mileage reimbursement. CONCLUSIONS: We found that school-based tele-physiatry for children with special health care needs is not inferior to in-person encounters with regard to parent and provider experience and perceived quality of care. Tele-physiatry was also associated with an average cost savings of $100 per clinic to the payer.
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Atitude Frente a Saúde , Crianças com Deficiência/reabilitação , Pais/psicologia , Serviços de Saúde Rural , Telemedicina/economia , Telemedicina/métodos , Populações Vulneráveis , Criança , Pré-Escolar , Estudos Cross-Over , Feminino , Humanos , Masculino , Medicina Física e ReabilitaçãoRESUMO
AIM: Paediatric head injuries (PHI) are the most common cause of trauma-related emergency department (ED) presentations. This study sought to report the incidence of PHI in Australia, examine the temporal trends from 2014 to 2018 and estimate the patient and population-level acute care costs. METHODS: Taking a public-sector health-care perspective, we applied direct and indirect hospital costs for PHI-related ED visits and acute admissions. All costs were inflated to 2018 Australian dollars ($). The patient-level analysis was performed with data from 17 841 children <18 years old enrolled in the prospective Australasian Paediatric Head Injury Study. Mechanisms of injury were characterised by the total and average acute care costs. The population-level data of PHI-related ED presentations were obtained from the Independent Hospital Pricing Authority. Age-standardised incidence rates (IR) and incidence rate ratios (IRR) were calculated, and negative binomial regression examined the temporal trend. RESULTS: The age-standardised IR for PHI was 2734 per 100 000 population in 2018, with a significant increase over 5 years (IRR 1.13, 95% confidence interval (CI) 1.12-1.14; P < 0.001) and acute care costs of $154 million. Falls occurred in 70% of the study cohort, with average costs per episode of $666 (95% CI: $627-$706), accounting for 47% of acute care costs. Transportation-related injuries occurred in 4.1% of the study cohort, with average costs per episode of $8555 (95% CI: $6193-$10 917), accounting for 35% of acute care costs. CONCLUSION: PHI have increased significantly in Australia and are associated with substantial acute care costs. Population-based efforts are required for road safety and injury prevention.
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Traumatismos Craniocerebrais , Adolescente , Austrália/epidemiologia , Criança , Pré-Escolar , Custos e Análise de Custo , Traumatismos Craniocerebrais/epidemiologia , Serviço Hospitalar de Emergência , Custos de Cuidados de Saúde , Hospitalização , Humanos , Estudos Prospectivos , Estudos RetrospectivosRESUMO
Appropriate support in the home may not be readily available for people living in the community with mental illness and physical comorbidities. This mixed-method study evaluated a smart home technology intervention for individuals within this population as well as providing health care providers with health monitoring capabilities. The study recruited 13 participants who were offered a smartphone, a touchscreen monitor, and health devices, including smartwatches, weigh scales, and automated medication dispensers. Healthcare providers were able to track health device data, which were synchronized with the Lawson Integrated DataBase. Participants completed interviews at baseline as well as at 6-month and 12-month follow-ups. Focus groups with participants and care providers were conducted separately at 6-month and 12-month time points. As the sample size was too small for meaningful statistical inference, only descriptive statistics were presented. However, the qualitative analyses revealed improvements in physical and mental health, as well as enhanced communication with care providers and friends/family. Technical difficulties and considerations are addressed. Ethics analyses revealed advancement in equity and fairness, while policy analyses revealed plentiful opportunities for informing policymakers. The economic costs are also discussed. Further studies and technological interventions are recommended to explore and expand upon in-home technologies that can be easily implemented into the living environment.
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Transtornos Mentais , Humanos , Transtornos Mentais/terapia , Tecnologia , Smartphone , Saúde Mental , Grupos FocaisRESUMO
Economic evaluation studies the costs and outcomes of two or more alternative activities to estimate the relative efficiency of each course of action. Economic evaluation is both important and necessary in the management of speech and language issues. Economic evaluation can help focus attention on interventions that provide value for improving population health. The purpose of this article is to introduce readers to fundamental economic concepts. Readers are also introduced to common issues when conducting economic evaluations and how to address them in practice.
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Fala , Análise Custo-Benefício , HumanosRESUMO
Cost-effectiveness analysis, the most common type of economic evaluation, estimates a new option's additional outcome in relation to its extra costs. This is crucial to study within the clinical setting because funding for new treatments and interventions is often linked to whether there is evidence showing they are a good use of resources. This article describes how to analyze a cost-effectiveness dataset using the framework of a net benefit regression. The process of creating estimates and characterizing uncertainty is demonstrated using a hypothetical dataset. The results are explained and illustrated using graphs commonly employed in cost-effectiveness analyses. We conclude with a call to action for researchers to do more person-level cost-effectiveness analysis to produce evidence of the value of new treatments and interventions. Researchers can utilize cost-effectiveness analysis to compare new and existing treatment mechanisms.
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Fala , Análise Custo-Benefício , HumanosRESUMO
BACKGROUND: Parenting programs can be economically attractive interventions for improving the mental health of both parents and their children. Few attempts have been made to analyse the value of children's and parent's outcomes simultaneously, to provide a qualified support for decision making. METHODS: A within trial cost-effectiveness evaluation was conducted, comparing Ladnaan, a culturally tailored parenting program for Somali-born parents, with a waitlist control. Quality-adjusted life years (QALY) for parents were estimated by mapping the General Health Questionnaire-12 to Euroqol's EQ-5D-3L to retrieve utilities. Behavioural problems in children were measured using the Child Behaviour Checklist (CBCL). Intervention costs were estimated for the trial. A net benefit regression framework was employed to study the cost-effectiveness of the intervention, dealing with multiple effects in the same analysis to estimate different combinations of willingness-to pay (WTP) thresholds. RESULTS: For a WTP of roughly 300 for a one point improvement in total problems on the CBCL scale (children), Ladnaan is cost-effective. In contrast, the WTP would have to be roughly 580,000 per QALY (parents) for it to be cost-effective. Various combinations of WTP values for the two outcomes (i.e., CBCL and QALY) may be used to describe other scenarios where Ladnaan is cost-effective. CONCLUSIONS: Decision-makers interested in multiple effects must take into account combinations of effects in relation to budget, in order to obtain cost-effective results. A culturally adapted parenting program may be cost-effective, depending on the primary outcome, or multiple outcomes of interest. Trial registration clinicaltrials.gov, NCT02114593. Registered 15 April 2014-prospectively registered, https://www.clinicaltrials.gov/ct2/results?recrs=&cond=&term=NCT02114593&cntry=&state=&city=&dist=.
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BACKGROUND: Weight telemonitoring may be an effective way to improve patients' ability to manage heart failure and prevent unnecessary utilization of health services. However, the effectiveness of such interventions is dependent upon patient adherence. OBJECTIVE: The purpose of this study was to determine how adherence to weight telemonitoring changes in response to 2 types of events: hospital readmissions and emergency department visits. METHODS: The Better Effectiveness After Transition-Heart Failure trial examined the effectiveness of a remote telemonitoring intervention compared with usual care for patients discharged to home after hospitalization for decompensated heart failure. Participants were followed for 180 days and were instructed to transmit weight readings daily. We used Poisson regression to determine the within-person effects of events on subsequent adherence. RESULTS: A total of 625 events took place during the study period. Most of these events were rehospitalizations (78.7%). After controlling for the number of previous events and discharge to a skilled nursing facility, the rate for adherence decreased by nearly 20% in the 2 weeks after a hospitalization compared with the 2 weeks before (adjusted rate ratio, 0.81; 95% confidence interval: 0.77-0.86; P < .001). CONCLUSIONS: Experiencing a rehospitalization had the effect of diminishing adherence to daily weighing. Providers using telemonitoring to monitor decompensation and manage medications should take advantage of the potential "teachable moment" during hospitalization to reinforce the importance of adherence.
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Insuficiência Cardíaca , Telemedicina , Serviço Hospitalar de Emergência , Insuficiência Cardíaca/terapia , Hospitalização , Humanos , Monitorização Fisiológica , Readmissão do PacienteRESUMO
Purpose The purpose of this systematic literature review (SLR) is to examine the state of knowledge about the cost-effectiveness of return-to-work (RTW) interventions targeted at workers with medically certified sickness absences related to mental disorders. Our SLR addresses the question, "What is the evidence for the cost-effectiveness of RTW interventions for mental illness related sickness absences?" Methods This SLR used a reviewer pair multi-phase screening of publically available peer-reviewed studies published between 2002 and 2019. Five electronic databases were searched: (1) MEDLINE 1946-Present, (2) MEDLINE: Epub-Ahead of Print and In-Process, (3) PsycINFO, (4) Econlit, and (5) Web of Science. Results 6138 unique citations were identified. Ten articles were included in the review. Eight of the ten studies were conducted in the Netherlands, one in Sweden, and one in Canada. Results of this SLR suggest there is evidence that RTW interventions for workers with medically certified sickness absences can be cost-effective. Conclusions Although this SLR's results suggest that economic evaluations of RTW interventions can be cost-effective, the use of economic evaluations for studies of these program types is in its infancy. Some jurisdictions (e.g., the Netherlands) seem to have recognized the need for economic evaluations. However, more research is needed in different disability system contexts. Furthermore, use of the standard economic evaluation approaches for healthcare interventions may limit the usefulness of results if the end-user is an employer or non-health organization. This may present the opportunity to introduce newer approaches that include work-related measures of effectiveness and analytical approaches.
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Transtornos Mentais , Retorno ao Trabalho , Canadá , Análise Custo-Benefício , Humanos , Países Baixos , SuéciaRESUMO
OBJECTIVES: To review assessments from the Institute for Clinical and Economic Review (ICER) and describe how cost-effectiveness, other benefits or disadvantages, and contextual considerations affect Council members' assessments of value. METHODS: Assessments published by the ICER between December 2014 and April 2019 were reviewed. Data on the assessment, intervention, results from cost-effectiveness analyses, and Council members' votes were extracted. Voting data were examined using bar charts and radar plots. Spearman's correlations between the number of votes for other benefits and contextual considerations were estimated. Two case studies (tisagenlecleucel and voretigene neparvovec) explored the relationship between different aspects of value and the vote. RESULTS: Thirty-one ICER assessments were reviewed, which included 51 value votes and 17 votes on other benefits and contextual considerations. On average, interventions with lower cost-effectiveness ratios received a higher proportion of high and intermediate value votes; however, there was heterogeneity across assessments. Of other benefits or disadvantages, having a novel mechanism of action received the most votes (n = 138), and reducing health disparities received the fewest (n = 24). Of contextual considerations, treating a condition that has a severe impact on length and quality of life received the most votes (n = 164). There was a strong positive correlation between votes for reduced caregiver/family burden and improving return to work/productivity (ρ = 0.88, P < .05). Two case studies highlighted that factors beyond cost-effectiveness can lead to lower (tisagenlecleucel) or higher (voretigene neparvovec) assessments of value. CONCLUSION: Council members' judgments about the value of interventions are influenced by other benefits or disadvantages and contextual considerations but anchored by cost-effectiveness.
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Análise Custo-Benefício , Anos de Vida Ajustados por Qualidade de Vida , Avaliação da Tecnologia Biomédica , Humanos , Qualidade de Vida , Estados UnidosRESUMO
BACKGROUND: Modern therapy for type 1 diabetes (T1D) increasingly utilizes technology such as insulin pumps and continuous glucose monitors (CGMs). Prior analyses suggest that T1D costs are driven by preventable hospitalizations, but recent escalations in insulin prices and use of technology may have changed the cost landscape. METHODS: We conducted a retrospective analysis of T1D medical costs from 2012 to 2016 using the OptumLabs Data Warehouse, a comprehensive database of deidentified administrative claims for commercial insurance enrollees. Our study population included 9445 individuals aged ≤18 years with T1D and ≥13 months of continuous enrollment. Costs were categorized into ambulatory care, hospital care, insulin, diabetes technology, and diabetes supplies. Mean costs for each category in each year were adjusted for inflation, as well as patient-level covariates including age, sex, race, census region, and mental health comorbidity. RESULTS: Mean annual cost of T1D care increased from $11 178 in 2012 to $17 060 in 2016, driven primarily by growth in the cost of insulin ($3285 to $6255) and cost of diabetes technology ($1747 to $4581). CONCLUSIONS: Our findings suggest that the cost of T1D care is now driven by mounting insulin prices and growing utilization and cost of diabetes technology. Given the positive effects of pumps and CGMs on T1D health outcomes, it is possible that short-term costs are offset by future savings. Long-term cost-effectiveness analyses should be undertaken to inform providers, payers, and policy-makers about how to support optimal T1D care in an era of increasing reliance on therapeutic technology.
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Diabetes Mellitus Tipo 1/economia , Diabetes Mellitus Tipo 1/terapia , Custos de Cuidados de Saúde/tendências , Adolescente , Automonitorização da Glicemia/economia , Automonitorização da Glicemia/instrumentação , Automonitorização da Glicemia/métodos , Criança , Pré-Escolar , Análise Custo-Benefício , Diabetes Mellitus Tipo 1/sangue , Diabetes Mellitus Tipo 1/epidemiologia , Feminino , Custos de Cuidados de Saúde/história , Disparidades em Assistência à Saúde/economia , Disparidades em Assistência à Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde/tendências , História do Século XXI , Humanos , Lactente , Sistemas de Infusão de Insulina/economia , Sistemas de Infusão de Insulina/estatística & dados numéricos , Sistemas de Infusão de Insulina/tendências , Masculino , Estudos Retrospectivos , Estados Unidos/epidemiologiaRESUMO
PURPOSE: With reduced mortality of neonatal conditions, health-related quality of life (HRQOL) has become an important clinical outcome. However, since the meaning of HRQOL in dependent, non-autonomous infants and neonates remains largely undefined, HRQOL measurement and economic evaluation are limited due to the lack of age-specific methodology. The objective was to construct a conceptual framework of neonatal and infant HRQOL (NIHRQOL) which identifies factors relevant to the neonate and infant, their relationship with each other and the caregiving environment. METHODS: Using qualitative methods, a concept was developed based on in-depth analysis of verbatim records of two focus groups (6 caregivers, 6 healthcare providers) and five interviews with caregivers of chronically ill neonates/infants (n = 2), and healthcare professionals of a pediatric tertiary healthcare center (n = 3). Two analysts independently performed thematic analysis using an inductive and contextual approach. RESULTS: The majority of participants regarded NIHRQOL as an individual entity, which was closely related and strongly influenced by caregivers and family. It may be gauged by the perceived degree of effort required to achieve expected normalcy in everyday life for the neonate/infant and its family. The importance of individual HRQOL factors is developmental stage-dependent. CONCLUSION: Neonatal and infant HRQOL is a multidimensional, multilayered and interconnected concept, where the child's needs contribute most directly, and the caregiver's and society's ability to meet those needs characterize the interdependence between the child and its caregiving environment. Developmental stage-specific HRQOL instruments for premature and mature neonates, and infants are warranted to allow for valid HRQOL measurement.
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Qualidade de Vida/psicologia , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Parents of infants in neonatal intensive care units (NICUs) are often unintentionally marginalized in pursuit of optimal clinical care. Family Integrated Care (FICare) was developed to support families as part of their infants' care team in level III NICUs. We adapted the model for level II NICUs in Alberta, Canada, and evaluated whether the new Alberta FICare™ model decreased hospital length of stay (LOS) in preterm infants without concomitant increases in readmissions and emergency department visits. METHODS: In this pragmatic cluster randomized controlled trial conducted between December 15, 2015 and July 28, 2018, 10 level II NICUs were randomized to provide Alberta FICare™ (n = 5) or standard care (n = 5). Alberta FICare™ is a psychoeducational intervention with 3 components: Relational Communication, Parent Education, and Parent Support. We enrolled mothers and their singleton or twin infants born between 32 0/7 and 34 6/7 weeks gestation. The primary outcome was infant hospital LOS. We used a linear regression model to conduct weighted site-level analysis comparing adjusted mean LOS between groups, accounting for site geographic area (urban/regional) and infant risk factors. Secondary outcomes included proportions of infants with readmissions and emergency department visits to 2 months corrected age, type of feeding at discharge, and maternal psychosocial distress and parenting self-efficacy at discharge. RESULTS: We enrolled 654 mothers and 765 infants (543 singletons/111 twin cases). Intention to treat analysis included 353 infants/308 mothers in the Alberta FICare™ group and 365 infants/306 mothers in the standard care group. The unadjusted difference between groups in infant hospital LOS (1.96 days) was not statistically significant. Accounting for site geographic area and infant risk factors, infant hospital LOS was 2.55 days shorter (95% CI, - 4.44 to - 0.66) in the Alberta FICare™ group than standard care group, P = .02. Secondary outcomes were not significantly different between groups. CONCLUSIONS: Alberta FICare™ is effective in reducing preterm infant LOS in level II NICUs, without concomitant increases in readmissions or emergency department visits. A small number of sites in a single jurisdiction and select group infants limit generalizability of findings. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT02879799 , retrospectively registered August 26, 2016.