Unmet Need among Children with Special Health Care Needs in Massachusetts

Objectives We partnered with a Massachusetts family workgroup to analyze state level data that would be most useful to consumers and advocates in Massachusetts. Methods Massachusetts’ and US data from the 2001 National Survey of Children with Special Health Care Needs (NSCSHCN) were analyzed. We examined types of need and prevalence of unmet need for all CSHCN and for more severely affected CSHCN. We also correlated unmet need to child and family characteristics using multivariate logistic regression. Results In Massachusetts, 17% of CSHCN and 37% of children more severely affected did not receive needed care. CSHCN who were uninsured anytime during the previous year were nearly 5 times more likely to experience an unmet need (OR = 4.95, CI: 1.69–14.51). Children with more functional limitations (OR = 3.15; CI: 1.59–6.24) and unstable health care needs (OR = 3.26; CI: 1.33–8.00) were also more likely to experience an unmet need. Receiving coordinated care in a medical home (OR = 0.46; CI: 0.23–0.90) was associated with reduced reports of unmet need. Conclusions With input from families of CSHCN, researchers can direct their analyses to answering the questions and concerns most meaningful to families. We estimate that 1 in 6 CSHCN in Massachusetts did not receive needed care, with more than 1 in 3 CSHCN with a more severe condition experiencing an unmet need. Enabling factors were predictors of unmet need suggesting solutions such as expanding insurance coverage and improving services systems for CSHCN.     

Unmet Health Care Needs Among Children with Special Health Care Needs Enrolled in Tricare

TRICARE provides health care benefits to nearly two million children of active duty, retired, National Guard, and reserve service members. Child health advocates and congressional reports have raised questions regarding the adequacy access to care for children with military health benefits, particularly children with special health care needs (CSHCN). The objective of this study was to compare the health care experiences of CSHCN in TRICARE with those of CSHCN with other sources of health insurance. A cross-sectional analysis comparing unmet health care needs among CSHCN with TRICARE versus CSHCN with other sources of health insurance using nationally representative data from three years of the National Survey of Children’s Health (NSCH), 2016-2018. The NSCH includes a broad range of questions related to child health and health care to provide national level estimates, and the data allow for comparisons between insurance coverage groups and TRICARE. The survey data contain responses from over 100,000 parents or primary caregivers (parents) of children, representative of over 73 million children annually. This includes 804 children who were representative of approximately 367,000 CSHCN covered by TRICARE annually. Children with special health care needs. Overall, 21 percent (95% CI 19-24 percent) of parents of children covered by TRICARE reported their child had a special health care need, compared to 16 percent of children with commercial insurance (95% CI 15-16 percent) and 24 percent of children with public insurance (95% CI 23-25 percent). Eight percent of parents of CSHCN covered by TRICARE (95% CI 4-16 percent) reported any unmet health care needs in the prior 12 months, compared to 4 percent of CSHCN with private insurance (95% CI 4-5 percent) and 9 percent of CSHCN with public insurance (95% CI 8-11 percent). Among specific needs, 3 percent or fewer CSHCN covered by TRICARE had unmet needs for medical, dental, vision, hearing, or mental health care. Similarly, 5 percent or fewer reported difficulty or delays in getting services because of eligibility for coverage of the service, availability in the area, difficulty in getting an appointment, or cost. About 11 percent of parents of CSHCN covered by TRICARE reported usually or always being frustrated in getting needed services for their child during the prior 12 months, compared to 4 percent of those with private insurance and 9 percent of those with public insurance. About 12 percent of parents of CSHCN covered by TRICARE reported problems with paying for their child’s health care needs in the prior 12 months, compared to 23 percent of those with private insurance and 8 percent of those with public insurance. TRICARE is largely meeting the needs of the CSHCN for whom it provides benefits, but there are opportunities for improvement. CSHCN in TRICARE face higher rates of unmet needs than privately insured children, and their parents face higher levels of frustration in getting needed services. TRICARE should continue to work with families of CSHCN to identify specific unmet needs and sources of frustration with getting needed services.     

Predictors of Unmet Family Support Service Needs in Families of Children with Special Health Care Needs

Objectives

This study describes rates of perceived and unmet need for family support services (care coordination, respite care, and family mental health care) among a national sample of children with special health care needs (CSHCN), distinguishing children with emotional, behavioral, or developmental problems (EBDPs) from children with primarily physical chronic conditions. It also examines if a child having EBDPs is associated with perceived and unmet family support service needs and investigates public versus private health insurance's moderating effect on this association.

Methods

Using data from the National Survey of Children with Special Health Care Needs (2005/2006 and 2009/2010), this cross-sectional study uses multi-level, fixed effects logistic regression.

Results

When compared to CSHCN with no EBDPs, parents of CSHCN with EBDPs report greater need for all family support services and greater rates of unmet need for all support services. This pattern of greater need for CSHCN with EBDPs versus those without is similar among those with public and private health insurance. Among CSHCN with family support needs, however, the pattern differs. For CSHCN with EBDPs, having public insurance is associated with lower probabilities of unmet needs compared to private insurance. For CSHCN without EBDPs, having public insurance has a mixed effect on probability of reporting unmet need.

Conclusion

Having EBDPs and public insurance is associated with increased perceived need, but public insurance also confers particular benefit for children with EBDPs.

     

Managed Care Organizational Characteristics and Health Care Use among Children with Special Health Care Needs

Objective. To examine the relationship between features of managed care organizations (MCOs) and health care use patterns by children.
Data Sources. Telephone survey data from 2,223 parents of children with special health care needs, MCO-administrator interview data, and health care claims data.
Study Design. Cross-sectional survey data from families about the number of consequences of their children's conditions and from MCO administrators about their plans' organizational features were used. Indices reflecting the MCO characteristics were developed using data reduction techniques. Hierarchical models were developed to examine the relationship between child sociodemographic and health characteristics and the MCO indices labeled: Pediatrician Focused (PF) Index, Specialist Focused (SF) Index, and Fee-for-Service (FFS) Index, and outpatient use rates and charges, inpatient admissions, emergency room (ER) visits, and specialty consultations.
Data Collection/Extraction Methods. The telephone and MCO-administrator survey data were linked to the enrollment and claims files.
Principal Findings. The child's age, gender, and condition consequences were consistent predictor variables related to health care use and charges. The PF Index was associated with decreased outpatient use rates and charges and decreased inpatient admissions. The SF Index was associated with increased ER visits and decreased specialty consultations, while the FFS Index was associated with increased outpatient use rates and charges.
Conclusion. After controlling for sociodemographic and health characteristics, the PF, SF, and FFS indices were significantly associated with children's health care use patterns.     

The Effect of Rural Residence on Dental Unmet Need for Children With Special Health Care Needs

BACKGROUND: Unmet need for dental care is the most prevalent unmet health care need among children with special health care needs (CSHCN), even though these children are at a greater risk for dental problems. The combination of rural residence and special health care needs may leave rural CSHCN particularly vulnerable to high levels of unmet dental needs. OBJECTIVE: To examine the effects of rural residence on unmet dental need for CSHCN. METHODS: We use the nationally representative National Survey of CSHCN Needs. We performed logistic regression to estimate the independent effects of rural residence on the likelihood of having an unmet dental need, using a measure of unmet need based on professional society recommendations and a measure based on parental report. RESULTS: Using either of the measures, a substantial percentage of CSHCN do not receive all needed dental care. Rural CSHCN are more likely to forgo needed dental care than their urban counterparts. Our results suggest that rural CSHCN have unmet needs for dental care due to both difficulty accessing care and because their parents do not recognize a need. CONCLUSION: Traditional access barriers for rural children, such as inadequate provider supply and lack of insurance, may increase unmet needs both directly and indirectly, through their effects on parents' perceptions of need. Reducing unmet needs for dental care in rural children with special needs will require addressing both access issues and parents' understanding of dental care need.     

Unmet Hearing Health Care Needs: The Beaver Dam Offspring Study

Objectives. We evaluated the use of hearing health care services (hearing testing and hearing aids) by adults aged 21 to 84 years.Methods. Hearing was tested and medical and hearing health histories were obtained as part of the Beaver Dam Offspring Study between 2005 and 2008 (n = 3285, mean age = 49 years).Results. Of the cohort, 34% (55% of participants aged ≥ 70 years) had a hearing test in the past 5 years. In multivariate modeling, older age, male gender, occupation, occupational noise, and having talked with a doctor about a hearing problem were independently associated with having had a hearing test in the past 5 years. Hearing aid use was low among participants with a moderate to severe hearing impairment (22.5%) and among participants with a hearing handicap (8.6%), as determined by the Hearing Handicap Inventory.Conclusions. Data support the need for improvement in hearing health care. Hearing aids’ effectiveness is limited if patients do not acquire them or do not use them once acquired. Future research should focus on developing effective strategies for moving patients from diagnosis to treatment.Hearing impairment is one of the most frequent chronic conditions in adults in the United States, with epidemiological prevalence estimates reaching 90% in the oldest adults.1 Hearing impairment is often accompanied by poorer quality of life and is associated with a range of comorbidities including cognitive dysfunction and depression.2–5 Despite the potential consequences, hearing impairments are often undiagnosed and untreated, and many adults who know they have hearing impairments do not acquire hearing aids.6,7 As the US population ages, hearing health care needs and hearing loss–related morbidity will be an increasing burden on the nation’s public health infrastructure.A research working group organized by the National Institutes of Health and the National Institute of Deafness and Communication Disorders recently developed a research agenda addressing issues of accessibility of hearing health care.8 Recommendations included the need to identify factors that influence a patient’s access to hearing health care and factors that influence a patient’s perceived need and motivation for seeking out hearing health care. Our objective was to determine the prevalence of previous hearing testing and current hearing aid use in a large cohort of adults and to assess characteristics associated with hearing health care use in the general population.     

Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care Needs

OBJECTIVES: To extend what is known about parent reports of their child's need for specialty medical and related services, unmet need, and specific types of access problems among children with special health care needs (CSHCN). METHODS: Using data from a 1998-1999 20-state survey of families of CSHCN, we examined differences in parent report of need for services by child characteristics, investigated parent report of unmet need and access problems by service area and number of services needed, and estimated the likelihood of four access problems and unmet need by child, family, and health insurance characteristics. RESULTS: Overall, the sample children had numerous service needs, although the prevalence of need varied by service type and child characteristics. Reports of unmet need were greater for older children and for children with multiple service needs, unstable health care needs or a behavioral health condition, parents who were in poor health or had more than a high school education, and families whose insurance coverage was inconsistent or lacked a secondary plan. Reports of access problems were greatest for mental health and home health services. The two most prevalent access problems were finding a skilled provider and getting enough visits. CONCLUSIONS: The results underscore the importance of finding new ways to link children with behavioral health problems to mental health services, implementing coordinated care and the other core dimensions of the medical home concept, increasing the number of specialty pediatricians and home health providers, and expanding coverage for a wider range of mental health services.     

Addressing Unmet Maternal Health Needs at a Pediatric Specialty Infant Care Clinic

ObjectiveThe objective of this intervention was to evaluate the feasibility of screening mothers of medically fragile infants in the domains of 1) depression, 2) tobacco exposure, and 3) family planning at a post-neonatal intensive care unit (NICU) developmental pediatric visit. Additionally, we sought to estimate the percentage who met criteria for further evaluation in the three domains assessed.MethodsA cross-sectional questionnaire was administered to 100 caregivers of medically fragile infants at a specialty, post-NICU clinic visit. Participants' responses in three domains were evaluated and appropriate referrals were provided. Analysis was then restricted to the 87 biological mothers who completed the screening. Study staff contacted the mothers 2 months later to determine whether services had been accessed and to assess overall satisfaction with the screening within the pediatric visit. Qualitative interviews were conducted with pediatric clinic staff.ResultsScreening questionnaires were completed by 87 biological mothers. Twenty-two mothers (25%) met referral criteria. Pediatric clinic staff and providers were comfortable administering the screening instrument, and there was minimal disruption to clinic flow.ConclusionsMothers of medically fragile infants are likely to have unmet health care needs that can be identified at a specialty pediatric clinic visit. A screening and referral intervention can be implemented with minimal interruption in pediatric clinic flow and is acceptable to mothers and pediatric providers.     

Delayed Care and Unmet Needs among Health Care System Users: When Does Fiduciary Trust in a Physician Matter?

Objectives. To examine whether fiduciary trust in a physician is related to unmet health care needs and delayed care among patients who have a regular physician, and to investigate whether the relationships between trust and unmet health care needs and delays in care are attenuated for disadvantaged patients who face structural obstacles to obtaining health care.
Data Sources/Study Setting. The 1998–1999 Community Tracking Study (CTS) Household Survey, a cross-sectional sample representative of the U.S. noninstitutionalized population. This study analyzes adults who usually see the same physician for their health care ( n =29,994).
Study Design. We estimated logistic regression models of the association of trust with unmet health care needs and delayed care. We tested interactions between trust and barriers to obtaining care, including minority race/ethnicity, poverty, and the absence of health insurance. Control variables included patients' sociodemographic characteristics, health status, satisfaction with the available choice of primary physicians, and the number of physician visits during the last year.
Principal Findings. Patients' fiduciary trust in a physician is negatively associated with the likelihood of reporting delayed care and unmet health care needs among most patients. Among African Americans, Hispanics, the poor, and the uninsured, however, fiduciary trust is not significantly associated with the likelihood of delayed care. For unmet needs, only the uninsured have no significant association with trust.
Conclusions. Results show that trust is associated with improved chances of getting needed care across most subgroups of the population, although this relationship varies by subpopulation.     

Health Care Access for Children With Special Health Care Needs in California

Objectives: This study examines health care access for children with special health care needs (CSHCN) in California, one of the nation’s most populous and diverse states. Methods: Data are from the National Survey of Children with Special Health Care Needs (NS-CSHCN), a nationally representative survey of access for U.S. children fielded by the National Center for Health Statistics (NCHS). California CSHCN and those in California’s Medicaid program are compared with CSHCN elsewhere on child health need, family enabling factors, health care enabling factors, system outcomes, and children’s experiences with care. Multivariable analysis identifies family and health care factors associated with system outcomes and children’s experiences with health care. Results: California parents generally report poorer experiences with care, lower performance on systems outcomes, and fewer health care and family enabling factors. The magnitude of disparity is greatest for CSHCN in Medi-Cal, although lower-income privately insured CSHCN in California also have poorer access than their counterparts in other states. Among CSHCN in Medicaid, greater condition impact and adolescent age are associated with poorer experiences in California for most measures. Disparities between California and other states persist even adjusting for family and health care factors in multivariable analysis. Conclusions: Performance gaps in California stem from population differences and apparent administrative barriers. Several statewide initiatives are addressing system barriers through supports to providers and information to parents.     

From Needs to Health Care Needs

One generally considered plausible way to allocate resources in health care is according to people’s needs. In this paper I focus on a somewhat overlooked issue, that is the conceptual structure of health care needs. It is argued that what conceptual understanding of needs one has is decisive in the assessment of what qualifies as a health care need and what does not. The aim for this paper is a clarification of the concept of health care need with a starting point in the general philosophical discussion about needs. I outline three approaches to the concept of need and argue that they all share the same conceptual underpinnings. The concept of need is then analyzed in terms of a subject x needing some object y in order to achieve some goal z. I then discuss the relevant features of the object y and the goal z which make a given need qualify as a health care need and not just a need for anything.     

Differentiating Subgroups of Children with Special Health Care Needs by Health Status and Complexity of Health Care Needs

Objectives Our objective is to use the Children with Special Health Care Needs (CSHCN) Screener to identify subgroups of CSHCN differentiated by health status and complexity of need. Methods Data are from the National Survey of Children with Special Health Care Needs, 2001 and the National Survey of Children’s Health, 2003 (conducted by the Maternal and Child Health Bureau and the National Center for Health Statistics); and the 2001 and 2002 Medical Expenditure Panel Survey, conducted by the Agency for Healthcare Research and Quality. A broad array of variables measuring health status, complexity of need, and related issues are examined by subgroupings of CSHCN. Results Relative to other CSHCN, CSHCN with functional limitations or who qualify on more CSHCN Screener items have poorer health status and more complex health care needs. They more often experience a variety of health issues; their insurance is more often inadequate; the impact of their conditions on their families is higher; and their medical costs are higher. Conclusion In the absence of information on specific conditions, health status, or complexity of need, the CSHCN Screener alone can be used to create useful analytic subgroups that differ on these dimensions. The proposed subgroups, based on the type or number of CSHCN screening criteria, differentiate CSHCN by health status and complexity of health care needs, and also show differences in the impact of their conditions on their families, costs of their medical care, and prevalence of various health problems. Certification of ethical research: This material presents a secondary data analysis of a deidentified data set. Human subjects review was therefore not required for this study.     

Indiana Children's Special Health Care Services Program: Impact of Administrative Changes on Health Care Utilization, Access to Care, and Unmet Needs

In this study we assessed the impact of administrative changes occurring in 1993 on the Indiana Children's Special Health Care Services program. Responses from a 1994-1995 survey were compared with a 199 1 survey. Unmet needs declined in 6 categories: primary medical care, hospital services, home nursing care, physical therapy, occupational therapy, and special equipment. Unmet needs remained the same in 6 categories: specialty care, speech therapy, respite care, parent support, child support, and sibling support. Unmet needs increased in 5 categories: dental care, mental health, transportation, housing modifications, and child and day care. Although program changes improved the health care needs of clients in many areas, additional efforts are still needed.     

Associations of Family-Centered Care with Health Care Outcomes for Children with Special Health Care Needs

The objective of this study is to examine the association of family-centered care (FCC) with specific health care service outcomes for children with special health care needs (CSHCN). The study is a secondary analysis of the 2005–2006 National Survey of Children with Special Health Care Needs. Receipt of FCC was determined by five questions regarding how well health care providers addressed family concerns in the prior 12 months. We measured family burden by reports of delayed health care, unmet need, financial costs, and time devoted to care; health status, by stability of health care needs; and emergency department and outpatient service use. All statistical analyses used propensity score-based matching models to address selection bias. FCC was reported by 65.6% of respondents (N = 38,915). FCC was associated with less delayed health care (AOR: 0.56; 95% CI: 0.48, 0.66), fewer unmet service needs (AOR: 0.53; 95% CI: 0.47, 0.60), reduced odds of ≥1 h/week coordinating care (AOR: 0.83; 95% CI: 0.74, 0.93) and reductions in out of pocket costs (AOR: 0.88; 95% CI: 0.80, 0.96). FCC was associated with more stable health care needs (AOR: 1.11; 95% CI: 1.01, 1.21), reduced odds of emergency room visits (AOR: 0.90; 95% CI: 0.82, 0.99) and increased odds of doctor visits (AOR: 1.25; 95% CI: 1.14, 1.37). Our study demonstrates associations of positive health and family outcomes with FCC. Realizing the health care delivery benefits of FCC may require additional encounters to build key elements of trust and partnership.