Clinical trial NCT03999957: CALLiNGS Protocol: Care Across Locations Longitudinally in Navigation of Goals and Symptoms
Official title: CALLiNGS Protocol: Care Across Locations Longitudinally in Navigation of Goals and Symptoms (Interdisciplinary Pediatric Telepalliative Consultations for Hospice Teams)
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Palliative Care
Keywords: hospice
pediatric
Lead sponsor: University of Nebraska
Sponsor class: OTHER
First posted: 2019-06-27
Enrollment: 30
Sex: ALL
Maximum age (years): 18
Standard ages: CHILD
ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: SUPPORTIVE_CARE

Brief summary: The study intends to explore feasibility, acceptability, and quality of life outcomes from using web-conferencing technology to connect a hospital-based interdisciplinary pediatric palliative care with statewide field-based hospice teams during interdisciplinary meetings at a minimum of every 15 calendar days for a maximum of six months per enrollee.

Detailed description: The Central Hypothesis is that telepalliative care has the potential to improve the quality of care delivered to pediatric palliative care patients in a rural state by connecting local care providers with palliative care interdisciplinary subspecialists at an academic health center to facilitate improved symptom burden which translates into enhanced quality of life for the pediatric patient and family members, increased confidence and comfort of local providers, and ultimately the creation of a unified and cross-setting shared care model.

Aim 1. To investigate the symptom burden for pediatric patients and the quality of life impact for pediatric patients and their families through an interdisciplinary pediatric telepalliative consultation service partnered with local hospice providers with an interface at a minimum of every 15 day intervals.

Aim 2. To evaluate the self-efficacy, knowledge, and self-perceived adequacy of local hospice providers in caring for pediatric patients before and after interdisciplinary pediatric telepalliative consultation service partnership with these local hospice providers.

Aim 3. To explore the acceptability of teleconferencing services as a form of pediatric palliative care mentorship for local hospice teams caring for children and adolescents.

Expected Outcomes Based on geography and shortage of pediatric palliative subspecialists in Nebraska, the current model of hospice services is one in which pediatric patients are managed by local adult-based hospice teams after discharge from the pediatric hospital (34 such in the past 16 months). Sixty percent of academic pediatricians in Nebraska who served as primary providers for consecutive pediatric home discharge patients self-reported feeling "very deficient" to "deficient" when asked about competence after supporting terminal patients and families in care at home (n=12).1 The knowledge gap and discomfort in managing children with complex symptom burden is magnified further for family practice or internal medicine teams serving in hospice roles for children in rural communities. Through a new telepalliative technology platform, this study fosters collaboration and communication to improve the quality of care for pediatric patients receiving hospice care in rural states. This model implements human interaction through technology to challenge the existing paradigm of silo-based care of pediatric palliative care patients. With roll-out of this intervention, we anticipate increase in pediatric hospice utilization (decreased in-hospital deaths). If feasible this model could transform the pediatric hospice care delivery in the state of Nebraska with expanded opportunity for application in settings with similar subspecialty provider shortages.

Eligibility criteria: Inclusion Criteria:

* age birth to 18 years.
* Enrolling on home hospice services within the state of Nebraska at time of discharge from the hospital.

Exclusion Criteria:

* Age older than age 18 years
* Does not speak English
* Not enrolling in home hospice services within the state of Nebraska at time of discharge from the hospital

Primary outcomes:
measure: To investigate quality of life trend over time for pediatric participants and their families
timeFrame: Every 15 days for a total of 3 months
measure: To evaluate the change in perception of adult-trained hospice providers about caring for pediatric patients on hospice
timeFrame: Day 1 of study and at Month 3
measure: To monitor change in telehealth technology acceptance over two week time
timeFrame: Day 1 and again on Day 14
Secondary outcomes:
Other outcomes:
Locations:
city: Omaha
country: United States
facility: Children's Hospital & Medical Center
state: Nebraska
city: Omaha
country: United States
facility: University of Nebraska Medical Center
state: Nebraska
Study officials:
affiliation: University of Nebraska
name: Meaghann S Weaver, MD
role: PRINCIPAL_INVESTIGATOR
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