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ELECTRONIC ARTICLE |
* School of Medicine, Vanderbilt University, Nashville, Tennessee
Division of General Pediatrics/Department of Pediatrics, School of Medicine, Vanderbilt University, Nashville, Tennessee
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONREFERENCES |
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Methods. Primary caregivers for 399 children who were enrolled in TennCare and presented for care at 21 pediatric and family medicine sites throughout Tennessee participated in a face-to-face interview.
Results. Of the 399 caregivers who participated in the study, 146 (36.6%) reported that their child experienced denial of care in the previous 12 months at a physician's office (12.5% of those interviewed), dentist's office (13.8%), or pharmacy (20.0%). For denial of any 1 type of care, families of children with chronic conditions (multivariable odds ratio [OR]: 2.05; 95% confidence interval [CI]: 1.41–2.99) and those whose parents had >12 years of education (OR: 1.80; CI: 1.21–2.70) were more likely to report denial of care; families of black children were less likely to report denial than white children (OR: 0.34; CI: 0.20–0.56). Content analysis of caregiver perceptions identified provider concerns about reimbursement as a factor in denials. Of the children who could not be seen by a physician, caregivers perceived that 12.2% became sicker as a result of the delay in care; 16.3% reported an emergency department visit after the denial.
Conclusions. More than one third of TennCare families reported denials of care for their children in the previous year, and factors surrounding these denials were identified. Given the large number of Americans who receive health care through Medicaid managed care programs like TennCare, more research is needed to understand the implications of denied care for children and families who are enrolled in these programs.
Key Words: Medicaid • managed care • TennCare • access • denial of care • child health • chronic conditions
Abbreviations: MMC, Medicaid managed care
Managed care programs are designed to optimize quality and minimize cost in part by controlling use of services that are believed to be of marginal value.1 In many instances, care restrictions and denials of care sought by patients and families may be appropriate because of lack of medical necessity or availability of effective alternative treatments. However, previous work among people with commercial insurance has suggested that restrictions and denials may lead individuals to seek care less often.2 Thus, restrictions on access to care might lead to unintended consequences for patients and their families.3
Little is known about family and patient experiences surrounding denials of health care for children since the widespread implementation of Medicaid managed care (MMC) programs. Managed care programs for Medicaid enrollees have expanded dramatically in recent years, with 23 000 000 people who are enrolled in MMC programs composing 58% of all Medicaid enrollees nationally.4 In addition, little is known about actions taken by economically disadvantaged families after care denials for their children and the families' perceived sequelae of such denials. Understanding families' experiences with denials and perceived outcomes might provide important insight for policy makers and providers who are charged with ensuring health promotion for children.
This study was designed to identify experiences with health care denials in the previous year among children who were enrolled in TennCare, Tennessee's managed care program for Medicaid enrollees and uninsured individuals. The study included identification of whether families reported care denials, factors associated with the denials, actions taken after care denial, and the family's perceived consequences of the denial on the child's health and the family.
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METHODS |
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The interview took 
10 minutes to complete and was administered by 2 of the authors (R.S.V. and D.F.K.) in a private area of the waiting room or in the examination room, depending on the practice's space availability. Consecutive patients were interviewed at practices on varying days of the week, and all families who were enrolled in TennCare and presented for care were invited to participate. Respondents were asked to describe experiences with denial of care for the child being brought to the provider on that day. When >1 potentially eligible child was presenting for care (2% of families), respondents were instructed to describe experiences for the oldest child present to allow sufficient representation of older children in the sample. In addition to child and respondent demographic information, the interview incorporated a 5-item validated survey instrument to determine whether the child had a chronic health condition.5 For assessing whether denials occurred, caregivers were asked, "In the past 12 months, have you ever been told that your child couldn't be seen by a doctor," and ". . . couldn't be seen by a dentist," and ". . . couldn't be seen in an emergency department," and ". . . couldn't get a prescription filled at a pharmacy?" Descriptions of events surrounding the denials were recorded by the interviewer. The interview included open- and closed-ended questions about actions taken by families after denials and the perceived sequelae of denials (eg, "In your opinion, did your child get sicker because he/she wasn't able to get care right away?"). The content of the interview was reviewed by experts in the delivery of pediatric health care and piloted with a small number of families before field implementation. Interrater reliability was established during the piloting sessions by having both interviewers record responses for a series of interviews; agreement was found on >90% of the key variables.
A total of 442 families were enrolled in TennCare and sought health care at 1 of the practice sites for a child who was 1 to 18 years of age and had been enrolled in TennCare for at least 1 year. Of the 442 eligible families, 32 families declined, yielding a participation rate among eligible families of 92.8%. After exclusion of 11 families because of incomplete data, responses from 399 families were included in the final analysis.
Strata were defined by study covariates, including child's age, gender, race, presence of a chronic health condition, caregiver education level, practice location, and practice environment. We used 
2 analysis to assess differences in rates of denial across strata. Multiple logistic regression models included chronic health condition, race, caregiver education level, and practice environment. Regression models accounted for clustering by practice site.6
In addition, we performed content analysis on the caregivers' verbatim descriptions of denials. Responses were reviewed by 3 of the authors (R.S.V., D.F.K., and W.O.C.) to identify themes among the reported reasons for denial, actions taken by the family, and perceived sequelae. Themes were grouped, and responses were reclassified for each outcome.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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Actions Taken by Primary Caregivers After Denial
After any reported denial of care by a physician, the most common action (51%) was to change providers (Table 4). After denial of care by a dentist's office, 26% of primary caregivers changed their child's provider, whereas 17% paid for dental care out of pocket. After denial of a prescription, 49% of primary caregivers reported paying for their child's medication out of pocket, at a mean cost per prescription of $43.71 (range: $6–$200). Among families who reported denial of prescriptions, 26% reported contacting TennCare or their health plan to appeal, whereas 20% contacted their doctor for a new prescription (Table 4). One mother reported, "The medicine wasn't covered by TennCare. I tried to talk the pharmacist into giving us a discount on the $85 medicine. He wouldn't. So I went to the doctor's office and tried to get a different prescription, but the doctor told the people at the front desk that no other medicine would work. Finally the people at the front desk gave me enough samples to cover it."
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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Although it is expected that managed Medicaid will inevitably lead to some care denials, unanticipated consequences may occur. Reimbursement procedures implemented by health plans might affect provider behavior, as was suggested by families who reported their belief that payment to providers drove some denial decisions. Previous work has demonstrated the role of provider reimbursement on providers' care behavior and that the behavioral changes may not be perceived by providers who are affected by reimbursement.7 Both physician and nonphysician providers (eg, pharmacists, hospitals) may be affected by the administrative barriers imposed when care is restricted. For example, some providers may believe that it is easier to collect payment in full from a family rather than process necessary appeals. Indeed, families in this study reported that they were told that they would have to pay for the care themselves because of low reimbursement by health plans. Families may seek care less often in anticipation of denials or to avoid arduous appeals processes, as was seen in the Rand Health Experiment studies in the 1980s.2
Most prescription denials were reported to occur because medicines were not on approved formulary lists. However, such denials should not occur under a court-ordered consent decree handed down in 2000 in a case in which the state of Tennessee was sued on behalf of TennCare enrollees. The Grier Consent mandated that pharmacies provide a 14-day supply of medication to TennCare enrollees when any prescription is presented, regardless of whether the medicine is listed on the health plan's formulary.8 Whether the reported denials of care reflect a misunderstanding of the court decree or a misapplication is not known. Education of physicians, pharmacies, and families about existing policies and procedures may improve access to prescriptions so that physicians stay within formulary whenever possible and pharmacies do not deny children temporary supplies of needed nonformulary medications when the medicine is off formulary.
The observation that children with chronic health conditions experience a higher rate of denial of care is consistent with previous work.9 However, the lower reported denial of care among blacks compared with whites and among children of less highly educated caregivers compared with those with more education was unexpected. There are at least 3 potential explanations for the findings. First, families in some sociodemographic groups may seek care less often for their children, resulting in fewer opportunities for denial of care. For example, one study found that black families reported less frequent filling of prescription medications for asthma as a result of cultural beliefs about the need for medications and perceived risks from their use.10 Second, TennCare offers more comprehensive benefits for low-income families.11,12 Because black families and families whose caregivers have less education have been shown to have higher rates of poverty, these families may qualify for TennCare through programs that allow for more generous benefits. Finally, providers may decide that families who are able to pay copays may have the ability to pay total costs out of pocket and thus may be more likely to deny care.
Although a large proportion of children in the study sample had chronic health conditions, this proportion is consistent with studies in other Medicaid populations in which the presence of chronic health conditions has been described for 15% to 32% of children, depending on the population studied.5,13,14 Parents with more education were not more likely to be parents of children with chronic health conditions.
Although most parents did not report negative consequences to their children's health as a result of denial of care, some did. The reported impact of denials, including worsening of the child's health conditions, pain, and the child's not being able to attend school or engage in regular activities, indicate that denial of health care has concrete implications in the daily lives of children and may increase use of other types of services such as emergency departments.
Limitations of this study include the nature of the sampling. Participants were identified in physicians' waiting rooms and thus represent a group to some extent already able to access care. If anything, this limitation should result in an underrepresentation of denial experiences for Tennessee children. However, all children in TennCare are assigned to a primary care provider, and there are no restrictions or special procedures to follow for families to obtain care from their primary care provider in TennCare. Thus, all of the visits for children in the study were equally available to all TennCare children.15 An additional limitation is the study's reliance on caregiver recall of denied care experiences, which may be subject to recall bias, especially for families who perceived negative sequelae. For minimizing bias, families were told that the study had to do with families' experiences in TennCare. However, we were unable to verify that the family did indeed experience the reported denial. Finally, we were unable to determine whether denied care was for a treatment that would be interpreted as medically necessary by most providers or whether families' expectations were reasonable concerning covered care.
Study strengths include the geographic and practice type representativeness of the sample. Children were identified at 21 pediatric and family medicine sites in all 3 grand regions of the state and represented a group with similar characteristics to the overall TennCare population. Another strength includes the use of interviews to collect information. Talking with families about their experiences with denied care provided important insight into the perceptions of their experiences that could not be identified through other means, such as secondary analysis of claims data.
TennCare is a Medicaid demonstration program approved under a federal waiver. As MMC programs continue to expand and as models for health care delivery are developed, important lessons can be learned from such demonstration programs. Additional research regarding denials of care in similar systems and the reasons for such denial will be helpful as future models of population-based health insurance coverage are explored.
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ACKNOWLEDGMENTS |
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FOOTNOTES |
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Reprint requests to (W.C.) Division of General Pediatrics, Vanderbilt University School of Medicine, Ste 5028 MCE, Nashville, TN 37232-8555. E-mail: william.cooper{at}vanderbilt.edu
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REFERENCES |
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This article has been cited by other articles:
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  J. E. DeVoe, A. Baez, H. Angier, L. Krois, C. Edlund, and P. A. Carney Insurance + Access != Health Care: Typology of Barriers to Health Care Access for Low-Income Families Ann. Fam. Med, November 1, 2007; 5(6): 511 - 518. [Abstract] [Full Text] [PDF]
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