Community-based Pediatric Palliative Care For Health Related Quality Of Life, Hospital Utilization And Costs Lessons Learned From A Pilot Study
Medical Complexity; Health Related Quality Of Life; Generic Core Scales; Impact; Hospital Utilization; Pilot Study; Pediatric Palliative Care; Reliability; Health Policy & Services; Illness; Cost-effectiveness; Home; Validity; Vulnerable Children; Pedsql(tm); Chronic Disease; United States; Health Care Sciences & Services
Chronic Disease; Cost-effectiveness; Health Related Quality Of Life; Hospital Utilization; Pediatric Palliative Care; Pilot Study
BACKGROUND:
Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care (CBPPC) provides a holistic approach to patient care that can improve their quality of life and lead to reduced costs of hospital care. This study's purpose was to analyze and report unpublished evaluation study results from 2007 that demonstrate the potential for CBPPC on Health Related Quality of Life (HRQoL) and hospital utilization and costs in light of the increasing national focus on the care of children with complex-medical conditions, including the Affordable Care Act's emphasis on patient-centered outcomes.
METHODS:
A multi-method research design used primary data collected from caregivers to determine the Program's potential impact on HRQoL, and administrative data to assess the Program's potential impact on hospital utilization and costs. Caregivers (n=53) of children enrolled in the Northeast Florida CBPPC program (Community PedsCare) through the years 2002-2007 were recruited for the Health Related Quality of Life (HRQoL) study. Children (n=48) enrolled in the Program through years 2000-2006 were included in the utilization and cost study.
RESULTS:
HRQoL was generally high, and hospital charges per child declined by $1203 for total hospital services (p=.34) and $1047 for diagnostic charges per quarter (p=0.13). Hospital length of stay decreased from 2.92 days per quarter to 1.22 days per quarter (p<.05).
CONCLUSION:
The decrease in hospital utilization and costs and the high HRQoL results indicate that CBPPC has the potential to influence important outcomes for the quality of care available for children with complex-medical conditions and their caregivers.
J Goldhagen
Bmc Palliative Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1186/s12904-016-0138-z
Children With Minimal Chance For Cure: Parent Proxy Of The Child's Health-related Quality Of Life And The Effect On Parental Physical And Mental Health During Treatment.
Pediatric Cancer; Oncology; Validity; Pedsql(tm); Impact; Module; Palliative Care; Diffuse Intrinsic Pontine Glioma; Clinical Neurology; Reliability; Pediatric Brain Tumor; Quality Of Life
Diffuse Intrinsic Pontine Glioma; Palliative Care; Pediatric Brain Tumor; Quality Of Life
Abstract
To assess health-related quality of life (HRQOL) from the time of diagnosis until disease progression in a cohort of children with diffuse intrinsic pontine glioma (DIPG). The assessment was collected from the perspectives of the child and their parents and evaluated the effect of the child's HRQOL on their parents' physical and mental well-being, thus providing insight into the optimal timing of palliative consultation, including anticipatory grief and bereavement services. This longitudinal study assessed 25 parents and their children, ages 2-17 years of age with DIPG across five time-points, baseline and weeks 2, 4, 6, 16, 24. Assessments included the PedsQL 4.0 Core Scales, PedsQL 3.0 Brain Tumor Scale, and Short-Form 36. HRQOL instruments were completed by the child (age ≥5 years) and parent-proxy (ages 2-17 years), with the parent completing the SF-36. Children's reports and parents' proxy of their child's HRQOL indicated poor physical functioning and increased anxiety at the initiation of therapy. A trending improvement in the children's HRQOL was reported by children and parents from baseline to week 6, with a decline at week 16. The childs' parent proxy reported cognitive problems, procedural anxiety and lower overall brain tumor HRQOL were assoicated with poorer self-reported parental mental status. Palliative care consultation should be initiated at the time of diagnosis and is supported in the high physical and emotional symptom burden reported by our patients, with heightened involvement initiated at 16 weeks. Prompt palliative care involvement, mitigating anxiety associated with clinic visits and procedures, management of brain tumor specific symptoms, advanced care planning, anticipatory grief and bereavement services, and care coordination may maximize HRQOL for patients and ensure positive long-term outcomes for parents of children with DIPG.
Mandrell B; Baker J; Levine D; Gattuso J; West N; Sykes A; Gajjar A; Broniscer A
Journal Of Neuro-oncology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1007/s11060-016-2187-9