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1.  Profiling Health and Health Related Services for Children with Special Health Care Needs with and without Disabilities 
Academic pediatrics  2011;11(6):508-516.
To profile and compare the health and health services characteristics for children with special health care needs (CSHCN) with and without disabilities, and to determine factors associated with unmet need.
Secondary data analysis of the 2005-06 National Survey of Children with Special Health Care Needs was conducted. The socio-demographics, health, and health services of CSHCN with and without disabilities were compared. Multivariable logistic regression was employed to examine factors associated with unmet need for health services.
Children from minority racial and ethnic groups and children living in or near poverty were overrepresented among CSHCN with disabilities compared to other CSHCN. Statistically higher percentages of CSHCN with disabilities had behavioral problems (39.6% vs. 25.2%), anxiety/depressed mood (46.1% vs. 24.0%) and trouble making/keeping friends (38.1% vs. 15.6%) compared to other CSHCN. 32% of CSHCN with disabilities received care in a medical home compared to 51% of other CSHCN. CSHCN with disabilities had higher rates of need and unmet need than other CSHCN for specialty care, therapy services, mental health services, home health, assistive devices, medical supplies and durable medical equipment. The adjusted odds of unmet need for CSHCN with disabilities were 71% higher than for other CSHCN.
CSHCN with disabilities had more severe health conditions and more health services need, but they less commonly received care within a medical home and had more unmet need. These health care inequities should be amenable to policy and health service delivery interventions to improve outcomes for CSHCN with disabilities.
What’s New
CSHCN with disabilities are identified as a distinct group of CSHCN because of their sociodemographic, health and health services characteristics. CSHCN with disabilities had more psychosocial problems and health service needs than other CSHCN. We also document inequities in health services by highlighting the rates of unmet need and low percentages of care within a medical home for CSHCN with disabilities.
PMCID: PMC3215793  PMID: 21962936
Children with Special Health Care Needs; Disabilities; Medical Home; Unmet Need
2.  Family Impacts among Children with Autism Spectrum Disorder: The Role of Health Care Quality 
Academic pediatrics  2014;14(4):398-407.
To compare health care quality and family employment and financial impacts among children with special health care needs (CSHCN) with autism spectrum disorder (CSHCN+ASD), CSHCN with functional limitations (CSHCN+FL), and CSHCN lacking these conditions (other CSHCN). To test whether high health care quality was associated with reduced family impacts among CSHCN+ASD.
Data from the 2009-2010 National Survey of CSHCN were used to compare 3025 CSHCN+ASD, 6505 CSHCN+FL, and 28 296 other CSHCN. Weighted multivariate logistic regression analyses examined six age-relevant, federally-defined health care quality indicators and five family financial and employment impact indicators. Two composite measures were additionally used: (1) receipt of care that met all age-relevant quality indicators; and (2) had ≥ two of the five adverse family impacts.
Across all health care quality indicators CSHCN+ASD fared poorly, with only 7.4% meeting all age-relevant indicators. CSHCN+ASD had worse health care quality than other CSHCN, including CSHCN+FL. CSHCN+ASD also had high rates of adverse family impact, with over half experiencing two or more adverse impacts. Rates of adverse family impact were higher in CSHCN+ASD than other CSHCN, including CSHCN+FL. Among CSHCN+ASD, those whose health care that met federal quality standards were less likely to have multiple adverse family impacts than CSHCN+ASD whose health care did not meet federal quality standards.
CSHCN+ASD are more prone to experience poor health care quality and family impacts than other CSHCN, even CSHCN+FL. Receipt of care meeting federal quality standards may potentially lessen adverse family impacts for CSHCN+ASD.
PMCID: PMC4076703  PMID: 24976352
autism spectrum disorder; disabled children; family health; family burden; financial burden; quality of health care; delivery of health care; integrated
3.  Does private insurance adequately protect families of children with mental health disorders? 
Pediatrics  2009;124(Suppl 4):S399-S406.
Although private insurance typically covers many health care costs, the challenges faced by families caring for a sick child are substantial. These challenges may be more severe for CSHCN with mental illnesses than for other special needs children. Our objective is to determine whether families of privately insured children needing mental health care face different burdens than other families in caring for their children.
Patients and Methods
We use the 2005–2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) to study privately insured children ages 6–17. We compare CSHCN with mental health care needs (N=4,918) to three groups: children with no SHCN (N=2,346), CSHCN with no mental health care needs (N=16,250), and CSHCN with no mental health care need but a need for other specialty services (N=7,902). The latter group is a subset of CSHCN with no mental health care need. We use weighted logistic regression and study outcomes across four domains: financial burden, health plan experiences, labor market and time effects, and parent experience with services.
We find that families of children with mental health care needs face significantly greater financial barriers, have more negative health plan experiences, and are more likely to reduce their labor market participation to care for their child than other families.
Families of privately insured CSHCN needing mental health care face a higher burden than other families in caring for their children. Policies are needed to aid these families in obtaining affordable, high quality care for their children.
PMCID: PMC2805472  PMID: 19948605
mental health; health care services; CSHCN
4.  Two-Year Impact of the Alternative Quality Contract on Pediatric Health Care Quality and Spending 
Pediatrics  2014;133(1):96-104.
To examine the 2-year effect of Blue Cross Blue Shield of Massachusetts’ global budget arrangement, the Alternative Quality Contract (AQC), on pediatric quality and spending for children with special health care needs (CSHCN) and non-CSHCN.
Using a difference-in-differences approach, we compared quality and spending trends for 126 975 unique 0- to 21-year-olds receiving care from AQC groups with 415 331 propensity-matched patients receiving care from non-AQC groups; 23% of enrollees were CSHCN. We compared quality and spending pre (2006–2008) and post (2009–2010) AQC implementation, adjusting analyses for age, gender, health risk score, and secular trends. Pediatric outcome measures included 4 preventive and 2 acute care measures tied to pay-for-performance (P4P), 3 asthma and 2 attention-deficit/hyperactivity disorder quality measures not tied to P4P, and average total annual medical spending.
During the first 2 years of the AQC, pediatric care quality tied to P4P increased by +1.8% for CSHCN (P < .001) and +1.2% for non-CSHCN (P < .001) for AQC versus non-AQC groups; quality measures not tied to P4P showed no significant changes. Average total annual medical spending was ∼5 times greater for CSHCN than non-CSHCN; there was no significant impact of the AQC on spending trends for children.
During the first 2 years of the contract, the AQC had a small but significant positive effect on pediatric preventive care quality tied to P4P; this effect was greater for CSHCN than non-CSHCN. However, it did not significantly influence (positively or negatively) CSHCN measures not tied to P4P or affect per capita spending for either group.
PMCID: PMC4079291  PMID: 24366988
pay-for-performance; capitation; payment; pediatrics; children with special health care needs; preventive care; acute care quality; chronic disease care quality; asthma; ADHD
Academic pediatrics  2009;9(6):420-426.
This paper grew out of a project reviewing progress in children's oral health since the Surgeon General's Report (SGR) on Oral Health. It includes a summary of advances in national surveillance of children with special health care needs (CSHCN), and presents more recent data on unmet dental care need among CSHCN. To that end, we used the 2006-National Survey of CSHCN to determine the prevalence of unmet dental care need among CSHCN and to compare this within subgroups of CSHCN, as well as to children without special health care needs, and to results from the previous iteration of this survey.
We found that dental care remains the most frequently cited unmet health need for CSHCN. More CSHCN had unmet need for non-preventive than preventive dental care. CSHCN who are teens, poorer, uninsured, had insurance lapses, or more severely affected by their condition had higher adjusted odds of unmet dental care needs. CSHCN who were both low-income and severely affected had 13.4 times the adjusted odds of unmet dental care need.
In summary, CSHCN are more likely to be insured and to receive preventive dental care at equal or higher rates than children without SHCN. Nevertheless, CSHCN, particularly lower income and severely affected, are more likely to report unmet dental care need compared to unaffected children. Despite advances in knowledge about dental care among CSHCN, unanswered questions remain. We provide recommendations towards obtaining additional data and facilitating dental care access for this vulnerable population.
PMCID: PMC2787477  PMID: 19945077
Dental Care; Children; Special Health Care Needs; Oral health; Disability
6.  Insurance Coverage and Financial Burden for Families of Children with Special Health Care Needs 
To examine the role of insurance coverage in protecting families of children with special health care needs (CSHCN) from the financial burden associated with care.
Data from the 2001 National Survey of Children with Special Health Care Needs were analyzed. We built two multivariate regression models using “work loss/cut back” and “experiencing financial problems” as the dependent variables and insurance status as the primary independent variable of interest while adjusting for income, race/ethnicity, functional limitation/severity, and other sociodemographic predictors.
Approximately 29.9 % of CSHCN live in families where their condition led parents to report cutting back on work or stopping work completely. Families of 20.9 % of CSHCN reported experiencing financial difficulties due to the child’s condition. Insurance coverage significantly reduced the likelihood of families experiencing financial problems at every income level. The proportion of families experiencing financial problems was reduced from 35.7 to 23.0 % for the poor and 44.9 to 24.5 % for low-income families with continuous insurance coverage (p<0.01 for both comparisons). Similarly, the proportion of parents having to cut back or stop work was reduced from 42.8 to 35.9 % for the poor (p<0.05) and 43.5 to 33.9 % for low-income families (p<0.01).
Continuous health insurance coverage provides protection from financial burden and hardship for families of CSHCN in all income groups. This evidence is supportive of policies designed to promote universal coverage for CSHCN. However, many poor and low-income families continue to experience work loss and financial problems despite insurance coverage. Hence, health insurance should not be viewed as a solution in itself, but instead as one element of a comprehensive strategy to provide financial safety for families with CSHCN.
PMCID: PMC1557643  PMID: 16843251
Children with Special Health Care Needs(CSHCN); health insurance; Medicaid; poverty status; National Survey of CSHCN; CSHCN, children with special health care needs; SCHIP, State Children’s Health Insurance
7.  Online Schools and Children With Special Health and Educational Needs: Comparison With Performance in Traditional Schools 
In the United States, primary and secondary online schools are institutions that deliver online curricula for children enrolled in kindergarten through 12th grade (K-12). These institutions commonly provide opportunities for online instruction in conjunction with local schools for students who may need remediation, have advanced needs, encounter unqualified local instructors, or experience scheduling conflicts. Internet-based online schooling may potentially help children from populations known to have educational and health disadvantages, such as those from certain racial or ethnic backgrounds, those of low socioeconomic status, and children with special health care needs (CSHCN).
To describe the basic and applied demographics of US online-school users and to compare student achievement in traditional versus online schooling environments.
We performed a brief parental survey in three states examining basic demographics and educational history of the child and parents, the child’s health status as measured by the CSHCN Screener, and their experiences and educational achievement with online schools and class(es). Results were compared with state public-school demographics and statistical analyses controlled for state-specific independence.
We analyzed responses from 1971 parents with a response rate of 14.7% (1971/13,384). Parents of online-school participants were more likely to report having a bachelor’s degree or higher than were parents of students statewide in traditional schools, and more of their children were white and female. Most notably, the prevalence of CSHCN was high (476/1971, 24.6%) in online schooling. Children who were male, black, or had special health care needs reported significantly lower grades in both traditional and online schools. However, when we controlled for age, gender, race, and parental education, parents of CSHCN or black children reported significantly lower grades in online than in traditional schooling (adjusted odds ratio [aOR] 1.45, 95% confidence interval [CI] 1.29–1.62 for CSHCN, P < .001; aOR 2.73, 95% CI 2.11–3.53 for black children, P < .001.) In contrast, parents with a bachelor’s degree or higher reported significantly higher online-school grades than traditional-school grades for their children (aOR 1.45, 95% CI 1.15–1.82, P < .001).
The demographics of children attending online schools do not mirror those of the state-specific school populations. CSHCN seem to opt into online schools at a higher rate. While parents report equivalent educational achievement in online and traditional classrooms, controlling for known achievement risks suggests that CSHCN and black children have lower performance in online than in traditional schools. Given the millions of students now in online schools, future studies must test whether direct assistance in online schools, such as taking individualized education plans into consideration, will narrow known disparities in educational success. Only then can online schools emerge as a true educational alternative for at-risk populations.
PMCID: PMC3384422  PMID: 22547538
Virtual schooling; schools; K-12; children with special health care needs; online learning; education, adolescent health services, special education
8.  Caregiver burden and preventive dental care use for U.S. children with special health care needs: a stratified analysis based on functional limitation 
Maternal and child health journal  2014;18(4):882-890.
To evaluate the association between caregiver burden and preventive dental care use for children with special health care needs (CSHCN) and assess if caregiver burden explains the relationship between child- and family-level characteristics and preventive dental care use.
Samples of U.S. CSHCN ages 3–17 years with a functional limitation (n=7,559) and those without (n=26,345) were derived from the 2005–2006 National Survey of CSHCN. We generated structural equation models, stratified by functional limitation, to describe the relationships between caregiver burden and preventive dental utilization. We measured caregiver burden using six items on whether the child's health condition impacted work, time spent on health management, and finances.
About 80.9% of CSHCN used preventive dental care. Higher levels of caregiver burden were associated with significantly lower odds of preventive dental care use for CHSCN with a functional limitation (β=−0.06; P<0.001) and those without (β=−0.07; P<0.001). For CSHCN with a functional limitation, family poverty and being uninsured were significantly associated with greater caregiver burden and less preventive dental use. Findings were similar for CSHCN without a functional limitation, except that lower caregiver education was also associated with greater caregiver burden and less preventive dental care use.
Caregiver burden is potential barrier to preventive dental care use for CSHCN and explains the relationship between child- and family-level characteristics and preventive dental care use. Interventions to improve the oral health of CSHCN should include strategies to reduce caregiver burden, especially within socioeconomically vulnerable families.
PMCID: PMC3815970  PMID: 23793537
children with special health care needs; caregiver burden; preventive dental care use; oral health disparities; structural equation models
9.  New opportunities, new approaches: serving children with special health care needs under SCHIP. 
Health Services Research  2000;35(5 Pt 3):102-111.
OBJECTIVE: To identify models for caring for children with special health care needs (CSHCN) under the State Children's Health insurance Program (SCHIP) and to analyze the strengths and weaknesses of each. DATA SOURCE: Site visits in five study States conducted in late 1999. STUDY DESIGN: Approximately 12 to 15 interviews were conducted in each site with state and local-level policymakers, program administrators, providers, and families. DATA COLLECTION: Standard protocols were used across sites to explore a range of key policy variables including eligibility, enrollment , identification, and referral of CSHCN; benefits; service delivery systems; payment mechanisms; and quality assurance and monitoring strategies. PRINCIPAL FINDINGS. Each of the study States' approaches to serving CSHCN represents one of four models: a mainstream approach , a wrap-around model, a service carve out , or a specialized system of care. Special provisions designed to enhance the coverage and accessibility of services beyond those extended to children generally can help to ensure that CSHCN enrolled in SCHIP receive comprehensive, coordinated care. CONCLUSIONS: The mainstream approach , wh ile aimed at providing comprehensive care for all children , could not identify CSHCN or monitor their care. Wrap-around models, while offering rich benefits to CSHCN, rely on providers to identify eligible children , with few referrals reported to date. Service carve outs preserve long-standing specialty systems of care for CSH CN but create challenges for care coordination . Specialized systems of care present challenges for capitation but appear to offer the most promise for comprehensive, coordinated care to CSHCN.
PMCID: PMC1383598  PMID: 16148955
10.  The importance of examining movements within the US health care system: sequential logit modeling 
Utilization of specialty care may not be a discrete, isolated behavior but rather, a behavior of sequential movements within the health care system. Although patients may often visit their primary care physician and receive a referral before utilizing specialty care, prior studies have underestimated the importance of accounting for these sequential movements.
The sample included 6,772 adults aged 18 years and older who participated in the 2001 Survey on Disparities in Quality of Care, sponsored by the Commonwealth Fund. A sequential logit model was used to account for movement in all stages of utilization: use of any health services (i.e., first stage), having a perceived need for specialty care (i.e., second stage), and utilization of specialty care (i.e., third stage). In the sequential logit model, all stages are nested within the previous stage.
Gender, race/ethnicity, education and poor health had significant explanatory effects with regard to use of any health services and having a perceived need for specialty care, however racial/ethnic, gender, and educational disparities were not present in utilization of specialty care. After controlling for use of any health services and having a perceived need for specialty care, inability to pay for specialty care via income (AOR = 1.334, CI = 1.10 to 1.62) or health insurance (unstable insurance: AOR = 0.26, CI = 0.14 to 0.48; no insurance: AOR = 0.12, CI = 0.07 to 0.20) were significant barriers to utilization of specialty care.
Use of a sequential logit model to examine utilization of specialty care resulted in a detailed representation of utilization behaviors and patient characteristics that impact these behaviors at all stages within the health care system. After controlling for sequential movements within the health care system, the biggest barrier to utilizing specialty care is the inability to pay, while racial, gender, and educational disparities diminish to non-significance. Findings from this study represent how Americans use the health care system and more precisely reveals the disparities and inequalities in the U.S. health care system.
PMCID: PMC2944276  PMID: 20831805
11.  Differential item functioning in quality of life measure between children with and without special health care needs 
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.
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 PedsQL. We identified CSHCN using the CSHCN Screener and assessed DIF related to CSHCN using a multiple group-multiple indicator-multiple cause (MG-MIMIC) method. 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).
Two (25%) and 3 items (60%) of physical and school functioning, respectively, were identified with non-uniform DIF, and two items (40%) of social functioning were identified with uniform DIF. Expected item/test scores and item/test information function suggest the impact of DIF is minimal. Before DIF calibration, HRQOL in CSHCN was more impaired than children without needs (effect size −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.
Although 30% of items in the PedsQL were identified with DIF related to CSHCN and children without needs, the impact of DIF is minimal.
PMCID: PMC3173710  PMID: 21914509
Children; differential item functioning; health-related quality of life; item response theory
12.  Socioeconomic Inequalities in Lung Cancer Treatment: Systematic Review and Meta-Analysis 
PLoS Medicine  2013;10(2):e1001376.
In a systematic review and meta-analysis, Lynne Forrest and colleagues find that patients with lung cancer who are more socioeconomically deprived are less likely to receive surgical treatment, chemotherapy, or any type of treatment combined, compared with patients who are more socioeconomically well off, regardless of cancer stage or type of health care system.
Intervention-generated inequalities are unintended variations in outcome that result from the organisation and delivery of health interventions. Socioeconomic inequalities in treatment may occur for some common cancers. Although the incidence and outcome of lung cancer varies with socioeconomic position (SEP), it is not known whether socioeconomic inequalities in treatment occur and how these might affect mortality. We conducted a systematic review and meta-analysis of existing research on socioeconomic inequalities in receipt of treatment for lung cancer.
Methods and Findings
MEDLINE, EMBASE, and Scopus were searched up to September 2012 for cohort studies of participants with a primary diagnosis of lung cancer (ICD10 C33 or C34), where the outcome was receipt of treatment (rates or odds of receiving treatment) and where the outcome was reported by a measure of SEP. Forty-six papers met the inclusion criteria, and 23 of these papers were included in meta-analysis. Socioeconomic inequalities in receipt of lung cancer treatment were observed. Lower SEP was associated with a reduced likelihood of receiving any treatment (odds ratio [OR] = 0.79 [95% CI 0.73 to 0.86], p<0.001), surgery (OR = 0.68 [CI 0.63 to 0.75], p<0.001) and chemotherapy (OR = 0.82 [95% CI 0.72 to 0.93], p = 0.003), but not radiotherapy (OR = 0.99 [95% CI 0.86 to 1.14], p = 0.89), for lung cancer. The association remained when stage was taken into account for receipt of surgery, and was found in both universal and non-universal health care systems.
Patients with lung cancer living in more socioeconomically deprived circumstances are less likely to receive any type of treatment, surgery, and chemotherapy. These inequalities cannot be accounted for by socioeconomic differences in stage at presentation or by differences in health care system. Further investigation is required to determine the patient, tumour, clinician, and system factors that may contribute to socioeconomic inequalities in receipt of lung cancer treatment.
Please see later in the article for the Editors' Summary
Editors' Summary
Lung cancer is the most commonly occurring cancer worldwide and the commonest cause of cancer-related death. Like all cancers, lung cancer occurs when cells begin to grow uncontrollably because of changes in their genes. The most common trigger for these changes in lung cancer is exposure to cigarette smoke. Most cases of lung cancer are non-small cell lung cancer, the treatment for which depends on the “stage” of the disease when it is detected. Stage I tumors, which are confined to the lung, can be removed surgically. Stage II tumors, which have spread to nearby lymph nodes, are usually treated with surgery plus chemotherapy or radiotherapy. For more advanced tumors, which have spread throughout the chest (stage III) or throughout the body (stage IV), surgery generally does not help to slow tumor growth and the cancer is treated with chemotherapy and radiotherapy. Small cell lung cancer, the other main type of lung cancer, is nearly always treated with chemotherapy and radiotherapy but sometimes with surgery as well. Overall, because most lung cancers are not detected until they are quite advanced, less than 10% of people diagnosed with lung cancer survive for 5 years.
Why Was This Study Done?
As with many other cancers, socioeconomic inequalities have been reported for both the incidence of and the survival from lung cancer in several countries. It is thought that the incidence of lung cancer is higher among people of lower socioeconomic position than among wealthier people, in part because smoking rates are higher in poorer populations. Similarly, it has been suggested that survival is worse among poorer people because they tend to present with more advanced disease, which has a worse prognosis (predicted outcome) than early disease. But do socioeconomic inequalities in treatment exist for lung cancer and, if they do, could these inequalities contribute to the poor survival rates among populations of lower socioeconomic position? In this systematic review and meta-analysis, the researchers investigate the first of these questions. A systematic review uses predefined criteria to identify all the research on a given topic; a meta-analysis is a statistical approach that combines the results of several studies.
What Did the Researchers Do and Find?
The researchers identified 46 published papers that studied people with lung cancer in whom receipt of treatment was reported in terms of an indicator of socioeconomic position, such as a measure of income or deprivation. Twenty-three of these papers were suitable for inclusion in a meta-analysis. Lower socioeconomic position was associated with a reduced likelihood of receiving any treatment. Specifically, the odds ratio (chance) of people in the lowest socioeconomic group receiving any treatment was 0.79 compared to people in the highest socioeconomic group. Lower socioeconomic position was also associated with a reduced chance of receiving surgery (OR = 0.68) and chemotherapy (OR = 0.82), but not radiotherapy. The association between socioeconomic position and surgery remained after taking cancer stage into account. That is, when receipt of surgery was examined in early-stage patients only, low socioeconomic position remained associated with reduced likelihood of surgery. Notably, the association between socioeconomic position and receipt of treatment was similar in studies undertaken in countries where health care is free at the point of service for everyone (for example, the UK) and in countries with primarily private insurance health care systems (for example, the US).
What Do These Findings Mean?
These findings suggest that patients in more socioeconomically deprived circumstances are less likely to receive any type of treatment, surgery, and chemotherapy (but not radiotherapy) for lung cancer than people who are less socioeconomically deprived. Importantly, these inequalities cannot be explained by socioeconomic differences in stage at presentation or by differences in health care system. The accuracy of these findings may be affected by several factors. For example, it is possible that only studies that found an association between socioeconomic position and receipt of treatment have been published (publication bias). Moreover, the studies identified did not include information regarding patient preferences, which could help explain at least some of the differences. Nevertheless, these results do suggest that socioeconomic inequalities in receipt of treatment may exacerbate socioeconomic inequalities in the incidence of lung cancer and may contribute to the observed poorer outcomes in lower socioeconomic position groups. Further research is needed to determine the system and patient factors that contribute to socioeconomic inequalities in lung cancer treatment before clear recommendations for changes to policy and practice can be made.
Additional Information
Please access these Web sites via the online version of this summary at
The US National Cancer Institute provides information about all aspects of lung cancer for patients and health care professionals (in English and Spanish); a monograph entitled Area Socioeconomic Variations in U. S. Cancer Incidence, Mortality, Stage, Treatment, and Survival, 19751999 is available
Cancer Research UK also provides detailed information about lung cancer and links to other resources, such as a policy statement on socioeconomic inequalities in cancer and a monograph detailing cancer and health inequalities in the UK
The UK National Health Service Choices website has a page on lung cancer that includes personal stories about diagnosis and treatment
MedlinePlus provides links to other US sources of information about lung cancer (in English and Spanish)
PMCID: PMC3564770  PMID: 23393428
13.  Do State Parity Laws Reduce the Financial Burden on Families of Children with Mental Health Care Needs? 
Health Services Research  2007;42(3 Pt 1):1061-1084.
To study the financial impact of state parity laws on families of children in need of mental health services.
Data Source
Privately insured families in the 2000 State and Local Area Integrated Telephone Survey National Survey of Children with Special Health Care Needs (CSHCN) (N=38,856).
Study Design
We examine whether state parity laws reduce the financial burden on families of children with mental health conditions. We use instrumental variable estimation controlling for detailed information on a child's health and functional impairment. We compare those in parity and nonparity states and those needing mental health care with other CSHCN.
Principle Findings
Multivariate regression results indicate that living in a parity state significantly reduced the financial burden on families of children with mental health care needs. Specifically, the likelihood of a child's annual out-of-pocket (OOP) health care spending exceeding $1,000 was significantly lower among families of children needing mental health care living in parity states compared with those in nonparity states. Families with children needing mental health care in parity states were also more likely to view OOP spending as reasonable compared with those in nonparity states. Likewise, living in a parity state significantly lowered the likelihood of a family reporting that a child's health needs caused financial problems. The likelihood of reports that additional income was needed to finance a child's care was also lower among families with mentally ill children living in parity states. However, we detect no significant difference among residents of parity and nonparity states in receipt of needed mental health care.
These results indicate that state parity laws are providing important economic benefits to families of mentally ill children undetected in prior research.
PMCID: PMC1955255  PMID: 17489904
Parity; mental health; CSHCN; economic burden
14.  Family Income Gradients in the Health and Health Care Access of US Children 
Maternal and Child Health Journal  2009;14(3):332-342.
This study sought to examine the shape and magnitude of family income gradients in US children’s health, access to care, and use of services. We analyzed cross-sectional data from the 2003 National Survey of Children’s Health, a telephone survey of 102,353 parents of children aged 0–17 years. Associations between family income [Below 100% Federal Poverty Level (FPL), 100–199% FPL, 200–299% FPL, 300–399% FPL, 400% FPL or Greater] and a set of 32 health and health care indicators were examined using linear polynomial testing and multivariate logistic regression. The percentage of children in better health increased with family income for 15 health outcomes. In multivariate logistic regression models that controlled for health insurance coverage and socio-demographic confounders, odds ratios >2 comparing the lowest to the highest income groups were noted for health conditions across both physical and developmental domains (diabetes, headaches, ear infections, learning disabilities, behavior/conduct problems, speech problems). Parent-reported global child health status, activity limitation, and oral health status showed steeper gradients than specific chronic and acute conditions. Ten measures of health care access and utilization were associated with family income in multivariate logistic regression models. Income gradients are pervasive across many health indicators at an early age. Social and health policy interventions are needed to address the multitude of factors that can affect children’s health and initiate disparities in development.
PMCID: PMC2862175  PMID: 19499315
Income gradients; Health outcomes; Access; Children
15.  Utilization of specialty mental health care among persons with severe mental illness: the roles of demographics, need, insurance, and risk. 
Health Services Research  2000;35(1 Pt 2):277-292.
OBJECTIVE: To examine the sociodemographic, need, risk, and insurance characteristics of persons with severe mental illness and the importance of these characteristics for predicting specialty mental health utilization among this group. DATA SOURCE: The Healthcare for Communities survey, a national study that tracks alcohol, drug, and mental health services utilization. Data come from a telephone survey of adults from 60 communities across the United States, and from a supplemental geographically dispersed sample. STUDY DESIGN: Respondents were categorized as having a severe mental disorder, other mental disorder, or no measured mental disorder. Differences among groups in sociodemographics (gender, marital status, race, education, and income), insurance coverage, need for mental health care (symptoms and perceived need), and risk indicators (suicide ideation, criminal involvement, and aggressive behavior) are examined. Measures of service use for mental health care include emergency room, inpatient, and specialty outpatient care. The importance of sociodemographics, need, insurance status, and risk indicators for specialty mental health care utilization are examined through logistic regression. PRINCIPAL FINDINGS: The severely mentally ill in this study are disproportionately African American, unmarried, male, less educated, and have lower family incomes than those with other disorders and those with no measured mental disorders. In a 12-month period almost three-fifths of persons with severe mental illness did not receive specialty mental health care. One in five persons with severe mental illness are uninsured, and Medicare or Medicaid insures 37 percent. Persons covered by these public programs are over six times more likely to have access to specialty care than the uninsured are. Involvement in the criminal justice system also increases the probability that a person will receive care by a factor of about four, independent of level of need. The average number of outpatient visits for specialty care varies little across type of disorder, and the median number of visits (ten) is equivalent for those with a severe mental illness and those with other disorders. CONCLUSIONS: Persons with severe mental illness have a high level of economic and social disadvantage. Barriers to care, including lack of insurance, are substantial and many do not receive specialty care. Public insurance programs are the major points of leverage for improving access, and policy interventions should be targeted to these programs. Problems of adequate care for the severely mentally ill may be exacerbated by the managed care trend to reductions in intensity of treatment.
PMCID: PMC1089101  PMID: 10778815
16.  Identifying Children with Special Health Care Needs in the National Health Interview Survey: A New Resource for Policy Analysis 
Health Services Research  2004;39(1):53-72.
To test the feasibility of using the National Health Interview Survey (NHIS) to identify children with chronic illness through a noncategorical approach, as exemplified by the Children with Special Health Care Needs (CSHCN) screener. The ability to use the NHIS to identify CSHCN will permit analyses of the effects of welfare reform and public insurance eligibility expansions during the late 1990s on CSHCN.
Data Sources
The NHIS from 1997, 1999, and 2000. The NHIS is an ongoing household survey representative of the civilian, noninstitutionalized population of the United States.
Study Design
Survey items were selected from the NHIS and thresholds designated to replicate the content and logic of the CSHCN screener. The screener asks explicit questions concerning an elevated need for, or use of health care services, and about limitations in activity, both caused by a chronic health condition. The algorithm created was applied to the pooled 1999–2000 NHIS to generate national prevalence estimates. Multivariate logistic regression was estimated to determine the effect of having particular demographic characteristics on the likelihood of being identified as CSHCN. Log odds ratios were compared to those from earlier NHIS-based estimates and from a pretest of the CSHCN screener.
Principal Findings
An estimated 12 percent of noninstitutionalized children aged 0 through 17 have a chronic condition that results in elevated service use or limitations in normal activity. This estimate is sensitive to inclusion of children with a broader array of less serious or shorter-term conditions. The estimated effects of child characteristics on the likelihood of being identified as having special health needs are similar but not identical to other algorithms that have been used to identify CSHCN.
It is feasible to use existing questions in the NHIS to identify a population of CSHCN that is substantially similar to children identified through other algorithms or through use of a screening instrument imbedded in a household survey. The availability of this algorithm will permit use of the NHIS for important analyses of the effects of welfare reform and public insurance expansions on children with special health care needs.
PMCID: PMC1360994  PMID: 14965077
Children; chronic illness; measurement; CSHCN screener
17.  Out-of-Pocket Financial Burden for Low-Income Families with Children: Socioeconomic Disparities and Effects of Insurance 
Health Services Research  2005;40(6 Pt 1):1722-1736.
To determine whether socioeconomic disparities exist in the financial burden of out-of-pocket (OOP) health care expenditures for families with children, and whether health insurance coverage decreases financial burden for low-income families.
Data Source
The Household Component of the 2001 Medical Expenditure Panel Survey.
Study Design
Cross-sectional family-level analysis. We used bivariate statistics to examine whether financial burden varied by poverty level. Multivariate regression models were used to assess whether family insurance coverage was associated with level of financial burden for low-income families. The main outcome was financial burden, defined as the proportion of family income spent on OOP health care expenditures, including premiums, for all family members.
Data Collection/Extraction
We aggregated annual OOP expenditures for all members of 4,531 families with a child <18 years old. Family insurance coverage was categorized as follows: (1) all members publicly insured all year, (2) all members privately insured all year, (3) all members uninsured all year, (4) partial coverage, or (5) mix of public and private with no uninsured periods.
Principal Findings
A regressive gradient was noted for financial burden across income groups, with families with incomes <100 percent of the Federal Poverty Level (FPL) spending a mean of $119.66 OOP per $1,000 of family income and families with incomes 100–199 percent FPL spending $66.30 OOP per $1,000, compared with $37.75 for families with incomes >400 percent FPL. For low-income families (<200 percent FPL), there was a 785 percent decrease in financial burden for those with full-year public coverage compared with those with full-year private insurance (p<.001).
Socioeconomic disparities exist in the financial burden of OOP health care expenditures for families with children. For low-income families, full-year public coverage provides significantly greater protection from financial burden than full-year private coverage.
PMCID: PMC1361224  PMID: 16336545
Financial burden; family coverage; health care costs; health care financing/insurance/premiums; socioeconomic disparities
18.  Reasons for Unmet Need for Child and Family Health Services among Children with Special Health Care Needs with and without Medical Homes 
PLoS ONE  2013;8(12):e82570.
Medical homes, an important component of U.S. health reform, were first developed to help families of children with special health care needs (CSHCN) find and coordinate services, and reduce their children’s unmet need for health services. We hypothesize that CSHCN lacking medical homes are more likely than those with medical homes to report health system delivery or coverage problems as the specific reasons for unmet need.
Data are from the 2005-2006 National Survey of Children with Special Health Care Needs (NS-CSHCN), a national, population-based survey of 40,723 CSHCN. We studied whether lacking a medical home was associated with 9 specific reasons for unmet need for 11 types of medical services, controlling for health insurance, child’s health, and sociodemographic characteristics.
Weighted to the national population, 17% of CSHCN reported at least one unmet health service need in the previous year. CSHCN without medical homes were 2 to 3 times as likely to report unmet need for child or family health services, and more likely to report no referral (OR= 3.3), dissatisfaction with provider (OR=2.5), service not available in area (OR= 2.1), can’t find provider who accepts insurance (OR=1.8), and health plan problems (OR=1.4) as reasons for unmet need (all p<0.05).
CSHCN without medical homes were more likely than those with medical homes to report health system delivery or coverage reasons for unmet child health service needs. Attributable risk estimates suggest that if the 50% of CSHCN who lacked medical homes had one, overall unmet need for child health services could be reduced by as much as 35% and unmet need for family health services by 40%.
PMCID: PMC3858312  PMID: 24340042
19.  Risk-Adjusted Capitation Rates for Children: How Useful Are the Survey-Based Measures? 
Health Services Research  2010;45(6 Pt 2):1948-1962.
Despite the recognition by some experts that survey measures have the potential to improve capitation rates for those with chronic conditions, few studies have examined risk-adjustment models for children, and fewer still have focused on survey measures. This study evaluates the performance of risk-adjustment models for children and examines the potential of survey-based measures for improving capitation rates for children.
Data Sources
The study sample includes 8,352 Medicaid children who were followed up for 2 years by the Medical Expenditure Panel Survey in 2000–2005.
Study Methods
Children's information in 1 year was used to predict their expenditures in the next year. Five models were estimated, including one each that used demographic characteristics, subjectively rated health status, survey measures about children with special health care needs (CSHCN), prior year expenditures, and Hierarchical Condition Category (HCC), which is a diagnosis-based model. The models were tested at the individual level using multiple regression methods and at the group level using split-half validation to evaluate their impact on expenditure predictions for CSHCN.
Principal Findings
The CSHCN information explained higher proportion of the variance in annual expenditures than the subjectively rated health status, but less than HCC measures and prior expenditures. Adding the CSHCN information into demographic factors as adjusters would remarkably increase capitation rates for CSHCN.
Survey measures, such as the CSHCN information, can improve risk-adjustment models, and their inclusion into capitation adjustment may help provide appropriate payments to managed-care plans serving this vulnerable group of children.
PMCID: PMC3029850  PMID: 20819105
Risk adjustment for resource use or payment; child and adolescent health; chronic disease; Medicaid; payment systems; capitation/risk-adjusted payments
20.  Health service access across racial/ethnic groups of children in the child welfare system✩ 
Child abuse & neglect  2009;33(5):282-292.
This study examined health service access among children of different racial/ethnic groups in the child welfare system in an attempt to identify and explain disparities.
Data were from the National Survey of Child and Adolescent Well-Being (NSCAW). N for descriptive statistics = 2,505. N for multiple regression model = 537. Measures reflected child health services need, access, and enabling factors. Chi-square and t tests were used to compare across racial/ethnic groups. A logistic regression model further explored the greatest disparity identified, that between non-Latino/a Black and White children in caseworker-reported access to counseling.
In general, caseworker reports of health care service receipt did not differ across racial/ethnic groups. However, Latino/a children had better reported access to vision services than non-Latino/a White children, and counseling access was lower for non-Latino/a Black children than non-Latino/a White children. Caseworkers' self-reported efforts to facilitate service access did not vary by race/ethnicity for any type of health care. In the multiple regression model, both private health insurance and a lack of insurance were negatively associated with counseling access, while a history of sexual abuse, adolescence, and greater caseworker effort to secure services were positively associated with access. Race was just barely nonsignificant after controlling for other factors expected to affect access.
One possible reason why Black children are less likely to be identified as needing counseling is the fact that they are less likely than White children to have reports of sexual abuse, which strongly predicts counseling access.
Practice implications
First, child welfare practice may be more equitable than many believe, with generally comparable health service access reported across children's racial/ethnic groups. Second, caseworkers may be under-identifying need for counseling services among Black children, although this might reflect less frequent reports of sexual abuse for Black children. Third, both privately insured and uninsured children were less likely to receive needed mental health counseling than those with public insurance. This suggests that policy makers should focus on increasing the numbers of children enrolled in public health insurance programs such as Medicaid and the State Children's Health Insurance Program (SCHIP).
PMCID: PMC2789595  PMID: 19481260
Disparities; Access; Mental health; Child welfare
21.  Effects of insurance status on children's access to specialty care: a systematic review of the literature 
The current climate of rising health care costs has led many health insurance programs to limit benefits, which may be problematic for children needing specialty care. Findings from pediatric primary care may not transfer to pediatric specialty care because pediatric specialists are often located in academic medical centers where institutional rules determine accepted insurance. Furthermore, coverage for pediatric specialty care may vary more widely due to systematic differences in inclusion on preferred provider lists, lack of availability in staff model HMOs, and requirements for referral. Our objective was to review the literature on the effects of insurance status on children's access to specialty care.
We conducted a systematic review of original research published between January 1, 1992 and July 31, 2006. Searches were performed using Pubmed.
Of 30 articles identified, the majority use number of specialty visits or referrals to measure access. Uninsured children have poorer access to specialty care than insured children. Children with public coverage have better access to specialty care than uninsured children, but poorer access compared to privately insured children. Findings on the effects of managed care are mixed.
Insurance coverage is clearly an important factor in children's access to specialty care. However, we cannot determine the structure of insurance that leads to the best use of appropriate, quality care by children. Research about specific characteristics of health plans and effects on health outcomes is needed to determine a structure of insurance coverage that provides optimal access to specialty care for children.
PMCID: PMC2222624  PMID: 18045482
22.  Assessing Systems of Care for US Children with Epilepsy/Seizure Disorder 
Background. The proportion of US children with special health care needs (CSHCN) with epilepsy/seizure disorder who receive care in high-quality health service systems was examined. Methodology. We analyzed data for 40,242 CSHCN from the 2009-2010 National Survey of CSHCN and compared CSHCN with epilepsy/seizure disorder to CSHCN without epilepsy/seizure disorder. Measures included attainment rates for 6 federal quality indicators with comparisons conducted using chi square and logistic regression methods. In addition, CSHCN with epilepsy/seizure disorder were compared to CSHCN without epilepsy/seizure disorder on the basis of 14 unmet health care needs. Results. Lower attainment rates for receiving comprehensive care in a medical home and easily accessible community-based services were found for CSHCN with epilepsy/seizure disorder versus CSHCN without epilepsy/seizure disorder (medical home: 32% versus 43%; accessible community-based services: 50% versus 66%, resp.) in unadjusted analyses. Lower adjusted odds for these indicators as well as greater unmet need for specialists, dentistry, prescriptions, therapies, and mental health care were also found for CSHCN with epilepsy/seizure disorder. Conclusions. Further efforts are needed to improve attainment of high-quality health care services for CSHCN with epilepsy/seizure disorders.
PMCID: PMC3818841  PMID: 24228175
23.  A sensitivity analysis of the Children’s Treatment Network trial: a randomized controlled trial of integrated services versus usual care for children with special health care needs 
Clinical Epidemiology  2013;5:373-385.
The value of integrated care through comprehensive, coordinated, and family-centered services has been increasingly recognized for improving health outcomes of children with special health care needs (CSHCN). In a randomized controlled trial (RCT), the integrated care provided through the Children’s Treatment Network (CTN) was compared with usual care in improving the psychosocial health of target CSHCN. In this paper, we aimed to estimate the effect of CTN care by conducting multiple analyses to handle noncompliance in the trial.
The trial recruited target children in Simcoe County and York Region, ON, Canada. Children were randomized to receive CTN or usual care and were followed for 2 years. The CTN group received integrated services through multiple providers to address their specific needs while the usual care group continued to receive care directed by their parents. The outcome was change in psychosocial quality of life at 2 years. We conducted intention-to-treat, as-treated, per-protocol, and instrumental variable analyses to analyze the outcome.
The trial randomized 445 children, with 229 in the intervention group and 216 in the control group. During follow-up, 52% of children in the intervention group did not receive complete CTN care for various reasons. At 2 years, we did not find a significant improvement in psychosocial quality of life among the children receiving CTN care compared with usual care (intention-to-treat mean difference 1.50, 95% confidence interval −1.49 to 4.50; P = 0.32). Other methods of analysis yielded similar results.
Although the effect of CTN care was not significant, there was evidence showing benefits of integrated care for CSHCN. More RCTs are needed to demonstrate the magnitude of such an effect. The CTN study highlights the key challenges in RCTs when assessing interventions involving integrated care, and informs further RCTs including similar evaluations.
PMCID: PMC3789843  PMID: 24098089
children with special health care needs; chronically ill; family-centered care; randomized controlled trial; noncompliance
24.  The Effect of Highly Active Antiretroviral Therapy on the Survival of HIV-Infected Children in a Resource-Deprived Setting: A Cohort Study 
PLoS Medicine  2011;8(6):e1001044.
This observational cohort study by Andrew Edmonds and colleagues reports that treatment with highly active antiretroviral therapy (HAART) markedly improves the survival of HIV-infected children in Kinshasa, DRC, a resource-deprived setting.
The effect of highly active antiretroviral therapy (HAART) on the survival of HIV-infected children has not been well quantified. Because most pediatric HIV occurs in low- and middle-income countries, our objective was to provide a first estimate of this effect among children living in a resource-deprived setting.
Methods and Findings
Observational data from HAART-naïve children enrolled into an HIV care and treatment program in Kinshasa, Democratic Republic of the Congo, between December 2004 and May 2010 were analyzed. We used marginal structural models to estimate the effect of HAART on survival while accounting for time-dependent confounders affected by exposure. At the start of follow-up, the median age of the 790 children was 5.9 y, 528 (66.8%) had advanced or severe immunodeficiency, and 405 (51.3%) were in HIV clinical stage 3 or 4. The children were observed for a median of 31.2 mo and contributed a total of 2,089.8 person-years. Eighty children (10.1%) died, 619 (78.4%) initiated HAART, six (0.8%) transferred to a different care provider, and 76 (9.6%) were lost to follow-up. The mortality rate was 3.2 deaths per 100 person-years (95% confidence interval [CI] 2.4–4.2) during receipt of HAART and 6.0 deaths per 100 person-years (95% CI 4.1–8.6) during receipt of primary HIV care only. The mortality hazard ratio comparing HAART with no HAART from a marginal structural model was 0.25 (95% CI 0.06–0.95).
HAART reduced the hazard of mortality in HIV-infected children in Kinshasa by 75%, an estimate that is similar in magnitude but with lower precision than the reported effect of HAART on survival among children in the United States.
Please see later in the article for the Editors' Summary
Editors' Summary
In 2009, an estimated 2.5 million children were living with HIV, the majority of whom (2.3 million) were in sub-Saharan Africa. Most (90%) of these children acquired HIV from their HIV-infected mothers during pregnancy, birth, or breastfeeding, highlighting the importance of giving effective drugs for the prevention of mother to child transmission. As such interventions are still not widely accessible or available in most resource-limited countries, where the burden of HIV is highest, every day an estimated 1,000 children were newly infected with HIV in 2009, but only 360,000 children were receiving highly active antiretroviral therapy (HAART).
Although HAART improves the survival of adults living with HIV, less is known about the degree to which HAART affects the survival of HIV-infected children—although response to antiretroviral treatment is known to differ across age groups. Furthermore, as the course of HIV disease in children is different from that in adults (partly because of the impact of the virus on the immature thymus, which can lead to high HIV RNA viremia and rapid death), it is inappropriate to extrapolate results from studies of adults to pediatric populations. Therefore, it is imperative that the effect of HAART on survival be quantified specifically in children.
Why Was This Study Done?
Most observational studies of the effects of treatment on child survival have been undertaken in high-income countries, such as Italy and the United States. As most children with HIV live in low-resource areas, where multiple factors, such as delayed presentation to care and a higher incidence of co-occurring conditions, might adversely affect treatment outcomes, there is a specific need for information on the effects of HAART in children with HIV living in low-income countries. Although some investigations have taken place in pediatric cohorts from such countries (for example, Côte d'Ivoire, Haiti, Lesotho, Thailand, and Zambia), the effect of HAART on mortality has not been accurately quantified among children in a resource-deprived setting. Therefore, in this observational clinical cohort study, the researchers investigated the effect of HAART on mortality in HIV-infected children in Kinshasa, in the Democratic Republic of the Congo (DRC).
What Did the Researchers Do and Find?
The researchers analyzed data from 790 children enrolled into an HIV program in Kinshasa, DRC, between December 2004 and May 2010 and used a statistical model (marginal structural models) to adjust for time-dependent confounding factors, such as the fact that HAART is typically initiated in sicker patients, for example, those with lower CD4 cell percentages. Assuming that all children starting HAART received it uninterruptedly throughout follow-up, using this statistical model, the researchers were able to compare the hazard ratio of death had all children initiated HAART to that had no children initiated HAART during follow-up.
In the study, 619 out of the 790 children (78.4%) initiated HAART during follow-up and were followed for a median of 31.2 months, with a median of 30 HIV care visits. Of those who started treatment, 110 (17.8%) switched to an alternative regimen because of an adverse event or treatment failure. During the 2,089.8 accrued person-years of follow-up, 80 children (10.1%) died, giving an overall mortality rate of 3.8 deaths per 100 person-years. The unadjusted mortality rate ratio comparing HAART to no HAART was 0.54. Using a marginal structural model, the researchers estimated that compared to no HAART, HAART reduced the hazard (rate) of mortality during follow-up by 75%.
What Do These Findings Mean?
These findings show that treatment with HAART markedly improved the survival of children infected with HIV in Kinshasa, DRC, and suggest that HAART is as effective in improving the survival of HIV-infected children in a severely resource-deprived country (still recovering from civil war) as in more resource-privileged settings—an important finding given that the vast majority of children receiving HAART live in resource-poor areas. This study provides additional evidence that accelerating rollout of antiretroviral therapy to children with HIV in resource-poor countries is lifesaving and effective. Future research needs to address how effective HAART is in understudied populations in resource-poor countries, such as undernourished children or those with co-infections such as tuberculosis.
Additional Information
Please access these Web sites via the online version of this summary at
The World Health Organization's Web site has more information about the treatment of children living with HIV
Médecins Sans Frontières's Campaign for Access to Essential Medicines Web site has more information on pediatric HAART
PMCID: PMC3114869  PMID: 21695087
25.  Role of SCHIP in Serving Children with Special Health Care Needs 
Health Care Financing Review  2006;28(2):53-64.
The purpose of this article is to provide new information about two policy issues: (1) Is the State Children's Health Insurance Program (SCHIP) an important source of health insurance for children with special health care needs (CSHCN? and (2) Does SCHIP provide CSHCN with better access to care, compared with other insurance coverage? Using the 2001 National Survey of CSHCN, we found that a limited fraction of CSHCN were eligible for SCHIP while a relatively small proportion of SCHIP-eligible CSHCN were uninsured. Access to care for CSHCN under SCHIP was better than those SCHIP-eligible but uninsured, and similar to those income-eligible for SCHIP but privately insured.
PMCID: PMC4194983  PMID: 17427845

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