OBJECTIVES: Medical neglect can have serious consequences. There is little evidence base to guide medical neglect management and research. Our objective was to describe a group of children reported to child protective services (CPS) for medical neglect to define this population as well as identify prevention and intervention approaches.
METHODS: This was a retrospective descriptive study of all patients at a pediatric hospital reported to CPS for medical neglect over a 6-year period. Data about health, health care, CPS involvement, and social history were obtained through medical record review.
RESULTS: Of the 154 patients reported for medical neglect, 140 (91%) had chronic illness. The most common diagnoses were type 1 diabetes, organ transplantation, and prematurity-related conditions. Most patients (83%) were black or Hispanic and 90% were publically insured. More than half of patients (54%) had >1 CPS report during the study period. Almost all patients (88%) returned to the hospital for care subsequent to the medical neglect report. Risk factors for child maltreatment, family stressors in the year preceding the report, and practical barriers to care were documented in more than two-thirds of patients.
CONCLUSIONS: Overall, children reported for medical neglect have serious chronic medical conditions. There is need and opportunity for improved interventions. Avenues for future study include interventions tailored to the underlying diagnosis, racial/ethnic disparities, effectiveness of CPS interventions, and targeted prevention for at-risk families with medically complex children.
With the discovery of more complex and effective treatments for pediatric diseases, the potential for nonadherence and the risks associated with inadequate treatment increase. A 1979 article discusses how, due to the discovery of effective anticancer treatments, cancer diagnoses no longer meant certain death. Consequently, oncologists were faced with new decisions when treatments were refused, including when to involve child protective services (CPS) for medical neglect.1 Given that antiretroviral therapy was proven to reduce the risk of mother-to-infant HIV transmission,2 legal and ethical considerations arise when parents refuse treatment.3 As treatments become more intricate, so too must our analysis of treatment delivery and adherence. Because children rely on their parents to participate in their medical care, medical neglect is an important consideration when there is poor adherence in pediatric patients. In 2013 there were more than 15 000 CPS reports for medical neglect in the United States.4 Medical neglect is associated with significant morbidity and mortality.5,6
The medical neglect literature has not flourished along with new scientific discoveries. Although neglect is the most common form of child maltreatment,4 there is a dearth of research on the topic of neglect and medical neglect.7–9 A study published in 1989 described 61 children diagnosed with chronic illness and any type of neglect.10 To our knowledge, there are no recent studies focused on characterizing a cohort of children reported to CPS for medical neglect. An American Academy of Pediatrics clinical report provides general guidelines on recognizing and responding to medical neglect.5 However, there are no disease-specific guidelines for managing or reporting medical neglect, and the lack of evidence-based data could result in inconsistent reporting practices. For example, medical professionals were asked to review vignettes describing families failing to seek medical care after a positive newborn screen for diseases such as phenylketonuria, sickle cell disease, congenital hypothyroidism, cystic fibrosis, and carnitine palmitoyltransferase.11 Respondents were then asked to indicate if they would file a report to CPS for medical neglect. Although all vignettes described failure to seek necessary medical care, reporting rates ranged from 40% to 61%, and varied based on respondent gender.11 Enhanced understanding of health conditions and health care of medical neglect victims could inform research aimed at improving medical neglect identification and management. The American Academy of Pediatrics report also outlines possible reasons that families fail to seek appropriate medical care.5 Understanding the prevalence of barriers to care would be helpful in designing intervention strategies.
The objective of this study was to describe patients reported to CPS for medical neglect with respect to demographic characteristics, social history, health and health care, interface with CPS, and risk factors for child maltreatment, as well as barriers to health care.
This retrospective descriptive study was conducted at Ann and Robert H. Lurie Children’s Hospital of Chicago after approval from the institutional review board.
All patients with at least 1 report to CPS for medical neglect during the 6.5-year study period were included. The hospital social work log was used to identify patients; hospital social workers are instructed to record all patients evaluated for maltreatment concerns in this password-protected log. Patients were excluded if there was a concomitant report for physical or sexual abuse.
Data were extracted from review of all inpatient, emergency department, and outpatient notes, as well as telephone encounters in the electronic medical record (EMR). Data from the time of the most recent CPS medical neglect report was recorded for patients who received multiple reports. The following sections describe the variables of interest.
Age, gender, race/ethnicity, and insurance type were recorded.
Health and Health Care
Medical diagnoses and information about medical treatments (number of prescribed medications, number of surgeries) were extracted. Variables related to health care utilization included the number of subspecialists following, inpatient admissions, ICU admissions, emergency department visits, and social work encounters, as well as the number of scheduled, missed, and completed outpatient appointments.
Family and Household Characteristics
Parental involvement, relationship, and age were recorded, as were number of adults in the household, number of biological parents in the household, and whether the patient lived in multiple households.
The number of CPS reports for medical neglect and the number of reports for other reasons were recorded for each patient. The time between initial visit to the hospital and most recent medical neglect report was calculated. It was also noted whether the patient returned to the hospital for care after medical neglect was reported to CPS; patients were classified as returning for care if there was at least 1 emergency department, outpatient, or inpatient visit after the report was made.
Risk Factors, Stressors, and Barriers to Care
Risk factors for child maltreatment studied were parental mental illness, substance abuse, domestic violence, and any history of caregiver police involvement. Barriers to care including lack of child care for siblings, transportation problems, and financial concerns were noted if documented at least once in the medical record. The following stressors in the year leading up to the report were recorded if documented in the medical chart: move, job change, major illness in another family member, birth of a new sibling, parental divorce or separation, incarceration, or death in the family.
Descriptive statistics were performed by using Stata version 11 (Stata Corp, College Station, TX).
After 3 patients were excluded due to concomitant reports for physical abuse, 154 patients reported to CPS for medical neglect were included.
Most patients were publically insured and of minority race/ethnicity (Table 1). Median age was 7.25 years (range 0–17.8 years). Children in all pediatric age groups were the subject of medical neglect reports (Table 1).
Health and Health Care
Most patients reported for medical neglect had serious, chronic medical conditions. The primary diagnosis was a chronic medical condition for 140 patients (90.9%), whereas only 14 (9.1%) had an acute condition as the primary diagnosis. There was a broad range of primary diagnoses concerning all pediatric subspecialties (Table 2).
On average, patients had multiple encounters with medical providers and hospital social workers in outpatient, inpatient, and emergency department settings. The median number (range) of completed, cancelled and missed appointments in the EMR were 41 (0–519), 8 (0–180), and 7 (0–188), respectively. The median number (range) of emergency department visits was 2 (0–67). Patients spent a median of 20.6 days inpatient during the study period (range 0–1055). The mean number of encounters with the hospital social worker was 26.8 (SD 32.2). The mean number of home medications prescribed at the time of the report was 3.5 (SD 3.5) and the mean number of subspecialists following each patient was 4.3 (SD 3.5). Seven patients (4.8%) died during the study period. Their primary diagnoses were heart transplantation (2), congenital heart disease (2), cerebral palsy, acute multiorgan failure in previously healthy child, and genetic syndrome with bone marrow transplantation. The extent to which fatalities were attributable to medical neglect versus natural progression of disease was not determined on this review. Median time between the CPS report and death was 0.7 years (range 0–3.6).
Family and Household Characteristics
Characteristics of patients’ primary household and family composition are in Table 3. Most patients lived in a household with ≥2 adults. For parental age, data were missing for 104 mothers (67.5%) and 135 fathers (87.5%). One-third of patients resided in >1 household.
Table 3 outlines the number of CPS reports for any reason and the number of reports for medical neglect specifically. More than half of patients (53.9%) had multiple CPS reports for any reason. More than a third of patients (35.7%) had multiple CPS reports for medical neglect.
A total of 136 patients (88.3%) returned to the hospital for care after the medical neglect report.
Risk Factors, Stressors, and Barriers to Care
Barriers to care were prevalent. Ninety patients (58.4%) had difficulty with transportation to medical care documented at least once in the medical record. Financial strain was documented for 91 patients (59.1%) and lack of child care for siblings was documented in 40 patients (36.0%). At least 1 risk factor for child maltreatment was present in 109 patients (70.8%) reported for medical neglect. A total of 104 patients (67.5%) had at least 1 stressor in the year preceding the CPS report for medical neglect. For many patients, data about risk factors and family stressors was not documented in the medical record. Table 4 documents the prevalence of risk factors and stressors in 2 ways: prevalence in the total study population is in the center column, and prevalence among only those patients who had information about the stressor or risk factor documented in the medical record is in the right column. The denominator in the right column represents the number of patients with documented information about the risk factor/stressor. For example, 45 patients had documented information about caregiver mental health; therefore, data about caregiver mental health were missing for 109 (70.8%) of 154 patients.
Most children reported for medical neglect have common chronic diseases familiar to all pediatricians. The most common primary diagnoses were type 1 diabetes, prematurity-related conditions, and organ transplants. There was a wide variety of primary diagnoses in this sample, indicating that practitioners in all areas of pediatric practice could encounter children whose medical needs are unmet. Patients with medical neglect reports were predominately from racial/ethnic minorities, and 90% were publically insured. Medical neglect affected children in all pediatric age groups, from infants to teenagers. Overall, children reported for medical neglect had multiple encounters with the health care system. More than half of patients had multiple CPS reports for any reason and more than a third had >1 CPS report for medical neglect. Risk factors for child maltreatment, family stressors in the year preceding the report, and practical barriers to care were documented in more than two-thirds of patients. These findings suggest both need and opportunity for improved intervention around medical neglect concerns, as well as potential avenues for intervention.
First, the serious diagnoses associated with CPS reports for medical neglect underscore the need to intervene effectively. For example, poor diabetes control is associated with diabetic ketoacidosis in the short term as well as long-term complications including nephropathy and cardiovascular disease.12 Medication nonadherence in children with organ transplantation is associated with high mortality risk.13 Although organ transplantation was one of the most common diagnoses in our study, the study by Jaudes and Diamond10 of neglected chronically ill patients treated between 1977 and 1984 did not include any transplanted patients. This difference is likely due to an increase in successful organ transplants since the late 1970s.14,15 The increased risk for rejection and mortality associated with medication noncompliance,13,16 together with growing organ transplant waiting lists,17 demonstrate the importance of effective medical management on both individual and societal levels.
There is also a need for medical neglect research aimed at addressing the diversity of underlying diagnoses and patient ages. The chronic conditions associated with medical neglect reports have different treatment demands, consequences of nonadherence, and measures of disease control. This signals a need for disease-specific indicators of medical neglect, as well as for interventions tailored to the specific treatment demands of the underlying diagnoses. Disease-specific prevention strategies could be helpful in the most common diagnoses in this sample. For example, premature infants often spend a prolonged amount of time in the hospital during the postnatal period. Prevention programs and medical neglect risk assessment tools designed for use during this prolonged hospital stay could be helpful. In addition, there is a need for assessments and interventions adapted to the patient’s age. Patient ability to participate in care, as well as dynamics of the parent-child relationship, evolves as children reach developmental milestones.
The results also suggest opportunity to improve medical neglect interventions. More than half of children reported for medical neglect had previous contact with CPS for any reason, and more than a third had previous reports for medical neglect. Future research aimed at understanding patient/family characteristics and CPS interventions associated with multiple reports could improve outcomes. Enhanced integration of CPS and medical professionals is also a potential avenue for improved medical neglect management. Most patients reported for medical neglect had numerous contacts with hospital professionals, and prolonged medical follow-up. Another key finding was that the vast majority of patients returned to the hospital for care after the CPS medical neglect report, suggesting that medical neglect interventions do not result in patients terminating care. It is important to highlight this finding because fear of losing patients to follow-up after a CPS report has been described by physicians as a barrier to reporting.18 Changes at an institutional level could also facilitate access to care in this population. For example, patients reported for medical neglect were followed by an average of 4 subspecialties. Care coordinators and multidisciplinary clinics could help to streamline care.
The prevalence of family stressors, risk factors for child maltreatment, and practical barriers to care could inform research on medical neglect interventions. Improving access to child care and transportation assistance may improve compliance with medical visits. Prospective and qualitative studies could help to identify other barriers to care. The fact that more than two-thirds of patients experienced a stressor in the year preceding the medical neglect report suggests that it could be important to conduct a social history not only at the initial visit, but also on follow-up.19 When stressors are identified, clinicians could help families to obtain additional resources, provide closer follow-up, and/or adapt treatment plans. In many cases, patients had missing data about risk factors and family stressors. This suggests a need for enhanced social history taking in this population. Given the high number of patients with missing data, the prevalence of risk factors was reported in 2 ways: prevalence in the overall study sample and prevalence among only those patients for whom information about the stressor/risk factor was documented in the medical record. The true prevalence most likely lies between the 2 reported values. It is probable that the prevalence in the overall sample underestimates the true prevalence, because risk factors were most likely present in some patients with missing data. The prevalence of risk factors among only those patients with data in the medical record likely overestimates the true prevalence; clinicians may be more likely to document the presence rather than the absence of a risk factor/stressor. Despite missing data, we found that more than two-thirds of patients had at least 1 risk factor for child maltreatment. The high prevalence of risk factors in this sample suggests that families with both risk factors and medically complex children could benefit from targeted interventions. Household characteristics also provide an avenue for intervention. Most patients lived with >1 adult, and attempts to involve additional caregivers in the child’s treatment could improve outcomes. One-third of patients resided in >1 household, and it would be important to ensure that caregivers in all living environments have the necessary medical equipment and training.
The most prevalent racial/ethnic group in this sample was black (53.6%), and the least prevalent was white (13.3%). Per EMR query, approximate prevalence of race/ethnicity among hospital patients during the study period was as follows: 38% white, 32% Hispanic, 12% black, 7% other, and 11% with missing data. Overrepresentation of minority racial and ethnic groups in CPS has been well described.20,21 Research suggests that a higher prevalence of risk factors in minority groups is an important contributor to the observed disparities.20,21 Reporting bias is another possible explanation. Further study of racial/ethnic disparities in medical neglect reports is needed, and could include comparison of patients with and without medical neglect reports. A control group would also account for possible racial/ethnic differences in the prevalence of diagnoses such as prematurity.22
Limitations of this study include its retrospective design, which impeded assessment of risk factors and barriers to care among patients with missing data. This limitation identifies an area for quality improvement; careful attention to the social history is important in chronically ill children. It was not possible to analyze parental age given the high prevalence of missing data; this is an area for future study. Another limitation was that all patients were from a single pediatric hospital. There was an average of 588 medical neglect reports per year in Illinois during the study years 2006 to 2012.23–29 Patients reported for medical neglect at other institutions in other geographic areas may have different demographic characteristics. Also, there may have been a greater number of children with minor or acute health problems had medical neglect reports from community primary care offices been included. It is of note that children followed at hospital primary care clinics were eligible for inclusion. Because patients were identified by using the hospital social work log, inconsistencies in log completion could influence the study sample. This study is also limited by the lack of a control group. Although it is not possible to compare the sample directly to children who were not reported for medical neglect, the high prevalence of chronic illness is clearly different from the general pediatric population. Finally, only children reported to CPS were included. Future studies including patients for whom there was a concern for medical neglect that did not get reported could be helpful in developing strategies to enhance detection and intervention.
Despite these limitations, this study highlights the need to advance our knowledge about medical neglect. Medical neglect affects patients followed by general pediatricians as well as all pediatric subspecialists. Children reported for medical neglect have serious illnesses, and there are individual and societal consequences to intervention failures. Avenues for future research include the development of disease-specific medical neglect guidelines, interventions tailored to patient age, racial and ethnic disparities in medical neglect reporting, effectiveness of CPS interventions, and targeted prevention for at-risk families with medically complex children. As scientific knowledge continues to advance, the social aspects of medicine cannot be neglected.
We thank Dr Cindy Christian for her review of the manuscript. We thank Kim Kaczor for her help with data.
Dr Fortin conceptualized and designed the study, performed data collection, carried out data analyses, and drafted the initial manuscript; Dr Kwon designed the study, and carried out data analyses; Dr Pierce designed the study, participated in data analyses, and critically reviewed the manuscript; and all authors approved the final manuscript as submitted.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
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