Building a regional pediatric asthma learning health system in support of optimal, equitable outcomes.

Introduction: Asthma is characterized by preventable morbidity, cost, and inequity. We sought to build an Asthma Learning Health System (ALHS) to coordinate regional pediatric asthma improvement activities. Methods: We generated quantitative and qualitative insights pertinent to a better, more equitable care delivery system. We used electronic health record data to calculate asthma hospitalization rates for youth in our region. We completed an "environmental scan" to catalog the breadth of asthma-related efforts occurring in our children's hospital and across the region. We supplemented the scan with group-level assessments and focus groups with parents, clinicians, and community partners. We used insights from this descriptive epidemiology to inform the definition of shared aims, drivers, measures, and prototype interventions. Results: Greater Cincinnati's youth are hospitalized for asthma at a rate three times greater than the U.S. average. Black youth are hospitalized at a rate five times greater than non-Black youth. Certain neighborhoods bear the disproportionate burden of asthma morbidity. Across Cincinnati, there are many asthma-relevant activities that seek to confront this morbidity; however, efforts are largely disconnected. Qualitative insights highlighted the importance of cross-sector coordination, evidence-based acute and preventive care, healthy homes and neighborhoods, and accountability. These insights also led to a shared, regional aim: to equitably reduce asthma-related hospitalizations. Early interventions have included population-level pattern recognition, multidisciplinary asthma action huddles, and enhanced social needs screening and response. Conclusion: Learning health system methods are uniquely suited to asthma's complexity. Our nascent ALHS provides a scaffold atop which we can pursue better, more equitable regional asthma outcomes.

A maturity grid assessment tool for learning networks.

BACKGROUND: The vision of learning healthcare systems (LHSs) is attractive as a more effective model for health care services, but achieving the vision is complex. There is limited literature describing the processes needed to construct such multicomponent systems or to assess development. METHODS: We used the concept of a capability maturity matrix to describe the maturation of necessary infrastructure and processes to create learning networks (LNs), multisite collaborative LHSs that use an actor-oriented network organizational architecture. We developed a network maturity grid (NMG) assessment tool by incorporating information from literature review, content theory from existing networks, and expert opinion to establish domains and components. We refined the maturity grid in response to feedback from network leadership teams. We followed NMG scores over time for nine LNs and plotted scores for each domain component with respect to SD for one participating network. We sought subjective feedback on the experience of applying the NMG to individual networks. RESULTS: LN leaders evaluated the scope, depth, and applicability of the NMG to their networks. Qualitative feedback from network leaders indicated that changes in NMG scores over time aligned with leaders' reports about growth in specific domains; changes in scores were consistent with network efforts to improve in various areas. Scores over time showed differences in maturation in the individual domains of each network. Scoring patterns, and SD for domain component scores, indicated consistency among LN leaders in some but not all aspects of network maturity. A case example from a participating network highlighted the value of the NMG in prompting strategic discussions about network development and demonstrated that the process of using the tool was itself valuable. CONCLUSIONS: The capability maturity grid proposed here provides a framework to help those interested in creating Learning Health Networks plan and develop them over time.

Networked health care: Rethinking value creation in learning health care systems.

Creating better value in health care service today is very challenging. The social pressure to do so is real for every health care system and its leadership. Real benefit has been achieved in manufacturing sector work by the use of "value-chain" thinking, which assumes that the work is a series of linked processes necessary to make a product. For those activities in health care systems that are similar, this model may be very helpful. Attempts to "install" the value chain widely in health care systems have, however, been frustrating. As a result, well-meaning leaders seeking better value have resorted to programs of cost reduction, rather than service redesign. Professionals have not been very happy or willing participants. The work of health care service invites an expanded model of value creation, one that better matches the work. This paper proposes a networked architecture that can mobilize and integrate the resources of health care professionals, interested patients, family, and other community members in the delivery and improvement of health care systems. It also suggests how this value-creation architecture might contribute to research and the development of new knowledge. Two cases illustrate the proposed architecture and its implications for system design and practice, technology development, and roles and responsibilities of all actors involved in health care systems. We believe that this model better fits the need of making and improving health care services. This expanded understanding of how value is created invites attention by senior leaders, by those attempting to facilitate the improvement of current systems, by patients and clinicians involved in the daily work of health care service coproduction, by those charged with the preparation and formation of future professionals, by those who measure and conduct research in health care services, and by those leading policy, payment, and reimbursement systems.

Assessment of a Precision Medicine Analysis of a Behavioral Counseling Strategy to Improve Adherence to Diabetes Self-management Among Youth: A Post Hoc Analysis of the FLEX Trial.

Importance: The Flexible Lifestyles Empowering Change (FLEX) trial, an 18-month randomized clinical trial testing an adaptive behavioral intervention in adolescents with type 1 diabetes, showed no overall treatment effect for its primary outcome, change in hemoglobin A1c (HbA1c) percentage of total hemoglobin, but demonstrated benefit for quality of life (QoL) as a prespecified secondary outcome. Objective: To apply a novel statistical method for post hoc analysis that derives an individualized treatment rule (ITR) to identify FLEX participants who may benefit from intervention based on changes in HbA1c percentage (primary outcome), QoL, and body mass index z score (BMIz) (secondary outcomes) during 18 months. Design, Setting, and Participants: This multisite clinical trial enrolled 258 adolescents aged 13 to 16 years with type 1 diabetes for 1 or more years, who had literacy in English, HbA1c percentage of total hemoglobin from 8.0% to 13.0%, a participating caregiver, and no other serious medical conditions. From January 5, 2014, to April 4, 2016, 258 adolescents were recruited. The post hoc analysis excluded adolescents missing outcome measures at 18 months (2 participants [0.8%]) or continuous glucose monitoring data at baseline (40 participants [15.5%]). Data were analyzed from April to December 2018. Interventions: The FLEX intervention included a behavioral counseling strategy that integrated motivational interviewing and problem-solving skills training to increase adherence to diabetes self-management. The control condition entailed usual diabetes care. Main Outcomes and Measures: Subgroups of FLEX participants were derived from an ITR estimating which participants would benefit from intervention, which would benefit from control conditions, and which would be indifferent. Multiple imputation by chained equations and reinforcement learning trees were used to estimate the ITR. Subgroups based on ITR pertaining to changes during 18 months in 3 univariate outcomes (ie, HbA1c percentage, QoL, and BMIz) and a composite outcome were compared by baseline demographic, clinical, and psychosocial characteristics. Results: Data from 216 adolescents in the FLEX trial were reanalyzed (166 [76.9%] non-Hispanic white; 108 teenaged girls [50.0%]; mean [SD] age, 14.9 [1.1] years; mean [SD] diabetes duration, 6.3 [3.7] years). For the univariate outcomes, a large proportion of FLEX participants had equivalent predicted outcomes under intervention vs usual care settings, regardless of randomization, and were assigned to the muted group (HbA1c: 105 participants [48.6%]; QoL: 63 participants [29.2%]; BMIz: 136 participants [63.0%]). Regarding the BMIz univariate outcome, mean baseline BMIz of participants assigned to the muted group was lower than that of those assigned to the intervention and control groups (muted vs intervention: mean difference, 0.48; 95% CI, 0.21 to 0.75; P = .002; muted vs control: mean difference, 0.86; 95% CI, 0.61 to 1.11; P < .001); this group also had a higher proportion of individuals with underweight or normal weight using weight status cutoffs (95 [69.9%] in muted group vs 24 [54.6%] in intervention group and 11 [30.6%] in control group; χ24 = 24.67; P < .001). The approach identified subgroups estimated to benefit based on HbA1c percentage (54 participants [25.0%]), QoL (89 participants [41.2%]), and BMIz (44 participants [20.4%]). Regarding the HbA1c percentage outcome, participants expected to benefit from the intervention did not have significantly higher baseline HbA1c percentages than those expected to benefit from usual care (9.4% vs 9.2%; difference, 0.2%; 95% CI, -0.16% to 0.56%; P = .44). However, participants in the muted group had higher mean HbA1c percentages at baseline than those assigned to the intervention or control groups (muted vs intervention: 9.9% vs 9.4%; difference, 0.5%; 95% CI, 0.13% to 0.89%; P = .02; muted vs control; 9.9% vs 9.2%; difference, 0.7%; 95% CI, 0.34% to 1.08%; P = .001). No significant differences were found between subgroups estimated to benefit in terms of the composite outcome from the FLEX intervention (91 participants [42.1%]) vs usual care (125 participants [57.9%]). Conclusions and Relevance: The precision medicine approach represents a conceptually and analytically novel approach to post hoc subgroup identification. More work is needed to understand markers of positive response to the FLEX intervention. Trial Registration: ClinicalTrial.gov identifier: NCT01286350.

Coproduction of healthcare service.

Efforts to ensure effective participation of patients in healthcare are called by many names-patient centredness, patient engagement, patient experience. Improvement initiatives in this domain often resemble the efforts of manufacturers to engage consumers in designing and marketing products. Services, however, are fundamentally different than products; unlike goods, services are always 'coproduced'. Failure to recognise this unique character of a service and its implications may limit our success in partnering with patients to improve health care. We trace a partial history of the coproduction concept, present a model of healthcare service coproduction and explore its application as a design principle in three healthcare service delivery innovations. We use the principle to examine the roles, relationships and aims of this interdependent work. We explore the principle's implications and challenges for health professional development, for service delivery system design and for understanding and measuring benefit in healthcare services.

Prevalence of and disparities in barriers to care experienced by youth with type 1 diabetes.

OBJECTIVE: To describe the prevalence of access and process barriers to health care and to examine their relationship to sociodemographic and disease factors in a large and diverse cohort of US youth with type 1 diabetes. STUDY DESIGN: A cross-sectional analysis of 780 youth who participated in the SEARCH for Diabetes in Youth Study and were diagnosed with type 1 diabetes in 2002-2005. Experience of barriers to care was collected from parent report on questionnaires. Analyses included multivariate regression models to predict the presence of specific barriers to care. RESULTS: Overall, 81.7% of participants reported at least one barrier; the 3 most common were costs (47.5%), communication (43.0%), and getting needed information (48.4%). Problems with access to care, not having a regular provider, and receiving contextual care (care that takes into account personal and family context) were associated with poorer glycated hemoglobin levels. Adjusted multivariate models indicated that barriers related to access (regular provider, cost) were most likely for youth with low family income and those without public health insurance. Barriers associated with the processes of quality care (contextual care, communication) were more likely for Hispanic youth and those whose parents had less education. CONCLUSIONS: This study indicates that a large proportion of youth with type 1 diabetes experience substantial barriers to care. Barriers to access and those associated with processes of quality care differed by sociodemographic characteristics. Future investigators should expand knowledge of the systemic processes that lead to disparate outcomes for some youth with diabetes and assess potential solutions.

Determinants of health-related quality of life in children newly diagnosed with juvenile idiopathic arthritis.

OBJECTIVE: To examine the degree to which nonmedical factors explain additional variance in parent proxy report and child self-report of health-related quality of life (HRQOL) among newly diagnosed children with juvenile idiopathic arthritis (JIA) after accounting for medical factors. METHODS: Parents (of children ages 2-16 years; n = 230) and patients (ages >5 years; n = 180) diagnosed within the previous 6 months completed surveys to assess medical (clinical parameters and functional status) and nonmedical (self-efficacy, coping, barriers to adherence, social support, parental distress, and access to care) factors and HRQOL (Pediatric Quality of Life Inventory Generic Core Scales). Physician-rated global assessment of disease activity, active joint count, and select laboratory variables (rheumatoid factor, antinuclear antibodies, and erythrocyte sedimentation rate) were recorded. RESULTS: Nonmedical factors, including self-efficacy, coping with pain, barriers to adherence, social support, and parental distress, explained additional variance in HRQOL total, physical functioning, and psychosocial functioning scales (R(2) increases of 6%, 1%, and 13% for parent proxy report and 16%, 7%, and 30% for self-report, respectively). Parental distress was uniquely associated with parent proxy-report HRQOL, while child self-efficacy and social support were uniquely associated with self-report HRQOL. CONCLUSION: Nonmedical factors are associated with HRQOL in newly diagnosed patients with JIA after accounting for medical variables, particularly for psychosocial functioning.

Collaborative Chronic Care Networks (C3Ns) to transform chronic illness care.

Despite significant gains by pediatric collaborative improvement networks, the overall US system of chronic illness care does not work well. A new paradigm is needed: a Collaborative Chronic Care Network (C3N). A C3N is a network-based production system that harnesses the collective intelligence of patients, clinicians, and researchers and distributes the production of knowledge, information, and know-how over large groups of people, dramatically accelerating the discovery process. A C3N is a platform of "operating systems" on which interconnected processes and interventions are designed, tested, and implemented. The social operating system is facilitated by community building, engaging all stakeholders and their expertise, and providing multiple ways to participate. Standard progress measures and a robust information technology infrastructure enable the technical operating system to reduce unwanted variation and adopt advances more rapidly. A structured approach to innovation design provides a scientific operating system or "laboratory" for what works and how to make it work. Data support testing and research on multiple levels: comparative effectiveness research for populations, evaluating care delivery processes at the care center level, and N-of-1 trials and other methods to select the best treatment of individual patient circumstances. Methods to reduce transactional costs to participate include a Federated IRB Model in which centers rely on a protocol approved at 1 central institutional review board and a "commons framework" for organizational copyright and intellectual property concerns. A fully realized C3N represents a discontinuous leap to a self-developing learning health system capable of producing a qualitatively different approach to improving health.

Differential item functioning in quality of life measure between children with and without special health-care needs.

OBJECTIVES: Limited studies consider the effect of differential item functioning (DIF) on health-related quality of life (HRQOL) comparisons between ill and health children. The objective is to assess DIF and compare HRQOL between children with special health-care needs (CSHCN) and children without needs. METHODS: Data were collected from 1195 families of children enrolled in Florida's public insurance programs. HRQOL was measured using physical, emotional, social, and school functioning of the Pediatric Quality of Life Inventory (PedsQL). We identified CSHCN using the CSHCN Screener and assessed DIF related to CSHCN using a multiple group-multiple indicators-multiple causes method (MG-MIMIC). We assessed the impact of DIF by examining expected item/test scores and item/test information function. We tested the discrepancy between underlying HRQOL scores of both groups before and after DIF calibration (allowing parameters of DIF items to be different and DIF-free items to be the same across both groups). RESULTS: Two (25%) and three items (60%) of physical and school functioning, respectively, were identified with nonuniform DIF, and two items (40%) of social functioning were identified with uniform DIF. Expected item/test scores and item/test information function suggest that the impact of DIF is minimal. Before DIF calibration, HRQOL in CSHCN was more impaired than in children without needs (effect sizes -1.04, -0.74, -0.96, and -0.98 for physical, emotional, social, and school functioning, respectively). After DIF calibration, the discrepancy was increased slightly. CONCLUSIONS: Although 30% of items on the PedsQL were identified with DIF related to CSHCN status, the impact of DIF is minimal.

Quality improvement project to reduce perioperative opioid oversedation events in a paediatric hospital.

BACKGROUND: Narcotics are responsible for many adverse drug events in children and there has been an increase in opioid oversedation events in hospitalised patients. OBJECTIVES: To use improvement methods to prevent perioperative opioid oversedation adverse events while continuing to provide appropriate pain control. METHODS: Interventions included revising the post-anaesthesia order form so that prescribers could choose only one narcotic and one dose for moderate pain and one narcotic and one dose for severe pain, modifying a nursing tool to provide more objective criteria for assessing patient sedation level, and restructuring the pain service. Clinicians on the Acute Pain Service saw all postoperative patients receiving intravenous patient-controlled analgesia or neuraxial narcotics in the mornings and afternoons and a nurse saw them on weekday evenings. RESULTS: The rate of opioid-related oversedation events decreased from 0.15 per 1000 patient days at baseline to 0.111 during the intervention period to 0.074 in the post-intervention period. The days between events increased from 21.0 to 27.5 to 48.8 during the same periods. The number of opioid-related oversedation events decreased from 22 to 17 to 5 during these periods, respectively. CONCLUSIONS: Opioid-related oversedation events decreased over the course of the study. Because the perioperative period is an especially likely time for opioid oversedation events, strict opioid prescribing practices, while maintaining adequate pain control and improved sedation assessment during the perioperative period, were emphasised. The restructured pain service and increased visits by pain team experts were also associated with the reduction in oversedation events.

National disparities in the quality of a medical home for children.

OBJECTIVES: To examine socio-demographic disparities associated with a quality medical home. METHODS: A nationally representative sample of children ages 0-17 years (n = 102,353) from the 2003 National Survey of Children's Health. Risk factors including non-white race/ethnicity, income <200% of the federal poverty level (FPL), uninsured, parent education lesser than high school, and non-English primary household language, were examined in relation to a quality medical home separately and together as a "profile" of risk. Fourteen questions were used to measure five medical home features: access, continuity, comprehensiveness, family-centered care, and coordination. Quality was defined as a value greater than median for each feature and for an overall score. RESULTS: Before and after adjustment for child demographics and health status, all studied risk factors were associated with poorer quality medical home features. Uninsured [odds ratio (OR) = 0.43, 95% confidence interval (CI): 0.40-0.47] and low-income children (OR = 0.65, CI: 0.62-0.69) had among the lowest odds of a quality medical home overall and across most features, except coordination that showed an opposite trend. Summarized through risk profiles, children experiencing all five risk factors had 93% lower odds of a quality medical home overall (OR = 0.07, CI: 0.04-0.25) compared to zero risk children. CONCLUSION: This study demonstrates large national disparities in the quality of a medical home for children. That disparities were most prevalent for the uninsured and those in or near poverty, both modifiable risk factors, suggests that reforms to increase coverage and to lift families out of poverty are essential to assuring that children have access to the full complement of appropriate health care services including a quality medical home.

Improvements in access to care for vulnerable children in California between 2001 and 2005.

OBJECTIVE: We examined population changes in access to care for children in California during a period of major efforts to improve access to care for children. METHODS: We used cross-sectional data on 36,010 children aged 0-19 years from the 2001 and 2005 California Health Interview Survey to assess population changes in access to care. We assessed changes in access by individual risk factors and a composite risk profile. RESULTS: In 2005, a smaller proportion of children were uninsured (8.2% vs. 10.9% in 2001), living in poverty (20.7% vs. 23.2% in 2001), and in families without a high school education (20.8% vs. 23.6% in 2001), all p<0.001. Before and after adjusting for these changes in risk, children were more likely in 2005 to have had a physician visit (odds ratio [OR] = 1.09, 95% confidence interval [CI] 1.07, 1.12) and dental visit (OR=1.11, 95% CI 1.08, 1.14). Children were slightly less likely in 2005 to have a regular source of care (OR=0.94, CI 0.91, 0.96). Children who had the highest risk profiles (> or = 4 risk factors) experienced the largest gains in access. For example, children with three and > or = 4 risk factors had gains in dental visits of 11 and 20 percentage points, respectively (p<0.001 for each), compared with < or = 3 percentage points for children with fewer risk factors. CONCLUSIONS: This study found improvements in physician and dental visits between 2001 and 2005 that were not fully explained by changes in insurance coverage or other demographic risk factors. Vulnerable children fared well during this period, suggesting that California may be making important and potentially replicable strides in reducing disparities.

Disparities in the national prevalence of a quality medical home for children with asthma.

OBJECTIVE: The aim of this study was to examine sociodemographic disparities in having a quality medical home among a nationally representative sample of children with asthma. METHODS: The study examined data from the 2003 National Survey of Children's Health to identify 8360 children aged 2-17 years with asthma. Risk factors including nonwhite race/ethnicity, income <200% of the federal poverty level (FPL), uninsured, parent education less than high school, and non-English language, were examined individually and as a profile of risk in relation to a quality medical home. Fourteen questions were used to measure 5 medical home features: access, continuity, comprehensiveness, family-centered care, and coordination. A poorer quality medical home was defined as < or =66 on a 100-point scale-corresponding to the feature being present less than "usually"-for each feature and for an overall score. RESULTS: Before and after adjustment for demographics and asthma difficulties, most risks except less than high school parent education were related to a poorer quality medical home. Uninsured children had the highest odds of a poorer quality medical home overall (adjusted odds ratio [OR] 5.19, 95% confidence interval [CI] 3.52-7.65) and across most features, except for coordination. Children experiencing 3+ risks had 8.56 times the odds of a poorer quality medical home overall (95% CI 4.95-14.78) versus zero risks. CONCLUSIONS: This study demonstrates large national disparities in a quality medical home for children with asthma. That disparities were most prevalent for the uninsured (insurance being a modifiable risk factor) suggests increasing coverage is essential to assuring that children obtain a quality medical home.

Barriers to care questionnaire: reliability, validity, and responsiveness to change among parents of children with asthma.

BACKGROUND: Although it is well known which groups of children are more vulnerable to poor health care access, quality, and outcomes, less is known about how and why this occurs. Barriers to care-sociobehavioral processes that interfere with successful interaction with the health care system--may be a link between vulnerability and access, experiences, and outcomes. OBJECTIVE: The aim of this study was to examine the reliability, validity, and responsiveness to change of the Barriers to Care Questionnaire (BCQ) in a sample of children with persistent asthma recruited from federally qualified health centers. METHOD: Children (N = 252; aged 2-14 years) with persistent asthma and their parents (93.7% mother, 83.3% Hispanic, 76.9% Spanish speaking; 72.6% less than a high school diploma), enrolled in a clinical trial, and completed the BCQ, questions relating to access to care, the Parent's Perceptions of Primary Care Measure, and the Pediatric Quality of Life Inventory 4.0 (PedsQL) at baseline and 3 months. RESULTS: The BCQ demonstrated internal consistency reliability. Supporting construct validity, barriers to care were worse for children without health insurance or an identified provider and who had problems with care or foregone care. Higher barriers correlated with poorer primary care and lower patient health-related quality of life. The BCQ was responsive to change, showing within- and between-subject differences for subjects with improved realized access from baseline to 3 months. CONCLUSION: The BCQ is a reliable, valid, and responsive measure of barriers to care for vulnerable children with asthma. Barriers to care were associated with poorer access, lower primary care quality, and worse health-related quality of life.

Barriers to care and primary care for vulnerable children with asthma.

OBJECTIVE: I tested the hypothesis that, for vulnerable children with asthma, barriers to care (pragmatics, skills, knowledge and beliefs, expectations of care, and marginalization) affect primary care experiences, after accounting for financial, potential, and realized access to care, demographic features, and asthma severity. METHODS: Patients, recruited primarily from urban, federally qualified health centers, were between 3 and 12 years of age and had been diagnosed as having asthma. Bilingual, bicultural interviewers administered surveys in participants' homes. Validated instruments were used to measure barriers to care (Barriers to Care Questionnaire) and primary care experiences (Parent's Perceptions of Primary Care measure). RESULTS: Of 252 families recruited, 56.6% of parents were monolingual Spanish speakers, 73.6% of mothers had not graduated from high school, and 24.5% of children were uninsured. Asthma severity was 27% mild persistent, 40.5% moderate persistent, and 32.5% severe persistent. In bivariate analyses, better access to care (being insured and having a regular provider) was related to better primary care experiences. Consistent with the hypothesis, multivariate regression analyses showed that fewer barriers (Barriers to Care Questionnaire scores) predicted better primary care (Parent's Perceptions of Primary Care total and subscale scores), after controlling for access to care, demographic features, and asthma severity (a 1-point change in Barriers to Care Questionnaire scores was associated with a 0.59-point change in Parent's Perceptions of Primary Care total scale scores). Having a regular doctor and not having experienced foregone care were also significant predictors of Parent's Perceptions of Primary Care scores in the multivariate analysis. CONCLUSION: For vulnerable children with asthma, barriers to care explain variance in primary care characteristics beyond that explained by access, demographic factors, and disease severity.

Longitudinal factorial invariance of the PedsQL 4.0 Generic Core Scales child self-report Version: one year prospective evidence from the California State Children's Health Insurance Program (SCHIP).

BACKGROUND: The measurement of health-related quality of life (HRQOL) in pediatric medicine and health services research has grown significantly over the past decade. The paradigm shift toward patient-reported outcomes (PROs) has provided the opportunity to emphasize the value and critical need for pediatric patient self-report. In order for changes in HRQOL/PRO outcomes to be meaningful over time, it is essential to demonstrate longitudinal factorial invariance. This study examined the longitudinal factor structure of the PedsQL 4.0 Generic Core Scales over a one-year period for child self-report ages 5-17 in 2,887 children from a statewide evaluation of the California State Children's Health Insurance Program (SCHIP) utilizing a structural equation modeling framework. METHODS: Specifying four- and five-factor measurement models, longitudinal structural equation modeling was used to compare factor structures over a one-year interval on the PedsQL 4.0 Generic Core Scales. RESULTS: While the four-factor conceptually-derived measurement model for the PedsQL 4.0 Generic Core Scales produced an acceptable fit, the five-factor empirically-derived measurement model from the initial field test of the PedsQL 4.0 Generic Core Scales produced a marginally superior fit in comparison to the four-factor model. For the five-factor measurement model, the best fitting model, strict factorial invariance of the PedsQL 4.0 Generic Core Scales across the two measurement occasions was supported by the stability of the comparative fit index between the unconstrained and constrained models, and several additional indices of practical fit including the root mean squared error of approximation, the non-normed fit index, and the parsimony normed fit index. CONCLUSION: The findings support an equivalent factor structure on the PedsQL 4.0 Generic Core Scales over time. Based on these data, it can be concluded that over a one-year period children in our study interpreted items on the PedsQL 4.0 Generic Core Scales in a similar manner.

Evidence for the effect of disease management: is $1 billion a year a good investment?

OBJECTIVE: To assess the evidence for the effect of disease management on quality of care, disease control, and cost, with a focus on population-based programs. STUDY DESIGN: Literature review. METHODS: We conducted a literature search for and a structured review of studies on population-based disease management programs, as well as for reviews and meta-analyses of disease management interventions. We identified 3 evaluations of large-scale population-based programs, as well as 10 meta-analyses and 16 systematic reviews, covering 317 unique studies. RESULTS: We found consistent evidence that disease management improves processes of care and disease control but no conclusive support for its effect on health outcomes. Overall, disease management does not seem to affect utilization except for a reduction in hospitalization rates among patients with congestive heart failure and an increase in outpatient care and prescription drug use among patients with depression. When the costs of the intervention were appropriately accounted for and subtracted from any savings, there was no conclusive evidence that disease management leads to a net reduction of direct medical costs. CONCLUSIONS: Although disease management seems to improve quality of care, its effect on cost is uncertain. Most of the evidence to date addresses small-scale programs targeting high-risk individuals, while only 3 studies evaluate large population-based interventions, implying that little is known about their effect. Payers and policy makers should remain skeptical about vendor claims and should demand supporting evidence based on transparent and scientifically sound methods.

Measuring primary care of children in pediatric resident continuity practices: a Continuity Research Network study.

OBJECTIVES: Pediatric resident continuity practices provide care to more than one fifth of the socioeconomically disadvantaged population of the United States. With the structural challenges of resident training, there may be concerns about a lower quality of care received by patients. The objectives of this study were to measure parental perception of resident primary care, to determine the characteristics associated with better care, and to compare perception with a previously published community standard. METHODS: A cross-sectional survey using the Parents' Perception of Primary Care was conducted of patients enrolled at 19 national academically affiliated resident continuity practices from the Continuity Research Network. Outcome measures included mean total scale score for the Parents' Perception of Primary Care and mean scores for each primary care domain. Comparisons were made between the subset of resident patients who were older than 5 years and a previously published community survey of parents of school-age children. RESULTS: A total of 2572 patients were enrolled with a final sample size of 2211 analyzable surveys. The sample was 37% black and 40% Hispanic; 81% of the children had Medicaid insurance; and 20% of the parents had less than a high school education. Parents rated the care that they received in resident continuity with high total scores and subscale scores, with an overall mean total scale score of 74.0. Higher scores were associated with number of visits to the provider and being able to name the resident as the primary care provider, whereas minority status was associated with lower access and communication scores. The resident sample over age 5 had higher mean scores for the total scale and every domain as compared with the community sample. CONCLUSIONS: Parents of patients at resident continuity sites rated residents as providers of high-quality care to a socioeconomically disadvantaged population as compared with a previously published community sample. Efforts to improve resident continuity and identification may help improve care delivered in resident practices.

Using foresight methods to anticipate future threats: the case of disease management.

We describe a unique foresight framework for health care managers to use in longer-term planning. This framework uses scenario-building to envision plausible alternate futures of the U.S. health care system and links those broad futures to business-model-specific "load-bearing" assumptions. Because the framework we describe simultaneously addresses very broad and very specific issues, it can be easily applied to a broad range of health care issues by using the broad framework and business-specific assumptions for the particular case at hand. We illustrate this method using the case of disease management, pointing out that although the industry continues to grow rapidly, its future also contains great uncertainties.