Identifying Patterns of Pediatric Mental and Behavioral Health at End of Life

Abstract

Children, who enroll in hospice, have complex mental and behavioral health (MHBH) problems. There is limited literature on patterns of these problems among children at their end of life. Using the national database of 6195 children enrolled in hospice between January 1, 2011, and December 31, 2013, and latent class analysis, this study identified 4 distinctive classes of children. Neurodevelopment and anxiety class (26.5% of the sample) had 41.3% of children of 15 years or older, who had an average of 1.4 MHBH comorbidities and took 17 medications; 29.1% had physical health comorbidities, and 23% were dependent on technology. In the Behavior and Neurodevelopment class (20%), 53.1% of the children were between ages 6 and 14 years, who had an average of 2 MHBH comorbidities and took 17 medications. In the Physiology class (43.4%), 65.5% of children were younger than 5 years, had 1 MHBH comorbidity, and took 19 medications. In the Mood, Behaviors, and Anxiety class (10.2%), more than 90% of children were older than 6 years, had 4 MHBH comorbidities, and took 30 medications. In the latter 3 classes, approximately half of the children either had physical health comorbidities or were technology dependent. These findings highlight the importance of end-of-life care that accounts for the likely presence of complicated patterns of MHBH conditions.

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda

“…In addition, limited research has examined the intersection of PPHC and mental illness and, in particular, the assessment and treatment of mental illness in pediatric patients who receive or who could benefit from both palliative and psychiatric care. [119][120][121] Further, as pediatric chronic illness management and palliative/hospice care shifts more heavily into the home setting and as treatment options become increasingly sophisticated, research that aims to understand patients', parents', home care nurses', and palliative and hospice providers' experiences of symptom assessment and management in the home is necessary. 79,86,122 Similarly, we must also improve symptom assessment and management for minoritized, historically marginalized communities.…”

“…Specifically, very little research on symptom assessment or management focuses on populations with developmental and/or neurologic characteristics that challenge usual assessment techniques, including younger children (neonates and 1- to 5-year-olds) and children with medically complex serious illnesses. In addition, limited research has examined the intersection of PPHC and mental illness and, in particular, the assessment and treatment of mental illness in pediatric patients who receive or who could benefit from both palliative and psychiatric care 119-121 . Further, as pediatric chronic illness management and palliative/hospice care shifts more heavily into the home setting and as treatment options become increasingly sophisticated, research that aims to understand patients', parents', home care nurses', and palliative and hospice providers' experiences of symptom assessment and management in the home is necessary 79,86,122 …”

“…Similarly, we must also improve symptom assessment and management for minoritized, historically marginalized communities. Although evidence exists that disparities in care, systemic racism, discrimination, and limited English proficiency may significantly impact the quality of care and care outcomes, 102-126 the impact of such disparities on the symptom experience for children and families remains largely unknown. Significantly more research is needed to improve symptom assessment and management in these populations in particular.…”

A National Study of Healthcare Service Patterns at the End of Life Among Children With Cardiac Disease

“…The findings that mental and behavioral health was common among the "moderate intensity" and "high intensity" groups suggest that additional research is needed to better understand these health conditions at the end of life. Although there is emerging evidence about mental and behavioral health among children enrolling in hospice care, 35,36 we still do not know what specific mental and behavioral health services are needed and used. In addition, there is a gap in our knowledge about who is providing mental and behavioral health services and how those services are being coordinated during concurrent hospice care.…”

An Age Group Comparison of Concurrent Hospice Care

“…5,6 Previous studies have also shown that concurrent hospice care may effectively reduce the costs of care. 2 Considering that children of different age groups require care of different intensity, [7][8][9] there is a need to assess the cost-effectiveness of concurrent care in reducing live discharges for children of different age groups.…”