Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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NOT_YET_RECRUITING
PHASE1/PHASE2
100 participants
INTERVENTIONAL
2024-07-01
2027-05-30
Brief Summary
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Detailed Description
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Conditions
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Study Design
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RANDOMIZED
PARALLEL
OTHER
SINGLE
Study Groups
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Photo-Narrative
Photo-Narrative
Photo-Narratives include 1-3 photos of the pediatric patient and their family to tell a story about palliative care topics that are shared with the child's clinicians.
Usual Care
No interventions assigned to this group
Interventions
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Photo-Narrative
Photo-Narratives include 1-3 photos of the pediatric patient and their family to tell a story about palliative care topics that are shared with the child's clinicians.
Eligibility Criteria
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Inclusion Criteria
* severe neurological impairment (including congenital/chromosomal, chronic central nervous system static or progressive conditions, or child \>6 months after severe traumatic brain injury
* admitted to the pediatric ICU at Seattle Children's and with medical team permission to approach
* expected length of stay \>1 week
* life expectancy \>4 weeks
* previous discharge home
Parents
* parent/legal guardian
* English and/or Spanish speaking (most common languages spoken at SCH making up 95% of patients and families)
* \>18 years of age
Clinicians
* licensed physicians, fellows, residents, advanced practice nurse practitioners, nurses, or respiratory therapists
* working in the pediatric ICU at Seattle Children's Hospital
3 Months
ALL
No
Sponsors
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Seattle Children's Hospital
OTHER
Responsible Party
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Principal Investigators
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Jori Bogetz, MD
Role: PRINCIPAL_INVESTIGATOR
Seattle Children's Hospital
Central Contacts
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References
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Allen J, Brenner M, Hauer J, Molloy E, McDonald D. Severe Neurological Impairment: A delphi consensus-based definition. Eur J Paediatr Neurol. 2020 Nov;29:81-86. doi: 10.1016/j.ejpn.2020.09.001. Epub 2020 Sep 11.
Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. 2011 Jun;127(6):1094-101. doi: 10.1542/peds.2010-3225. Epub 2011 May 9.
Berry JG, Poduri A, Bonkowsky JL, Zhou J, Graham DA, Welch C, Putney H, Srivastava R. Trends in resource utilization by children with neurological impairment in the United States inpatient health care system: a repeat cross-sectional study. PLoS Med. 2012 Jan;9(1):e1001158. doi: 10.1371/journal.pmed.1001158. Epub 2012 Jan 17.
Moreau JF, Fink EL, Hartman ME, Angus DC, Bell MJ, Linde-Zwirble WT, Watson RS. Hospitalizations of children with neurologic disorders in the United States. Pediatr Crit Care Med. 2013 Oct;14(8):801-10. doi: 10.1097/PCC.0b013e31828aa71f.
DeCourcey DD, Silverman M, Oladunjoye A, Balkin EM, Wolfe J. Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions. J Pediatr. 2018 Feb;193:196-203.e2. doi: 10.1016/j.jpeds.2017.09.078. Epub 2017 Nov 22.
Nolan R, Luther B, Young P, Murphy NA. Differing perceptions regarding quality of life and inpatient treatment goals for children with severe disabilities. Acad Pediatr. 2014 Nov-Dec;14(6):574-80. doi: 10.1016/j.acap.2014.02.012. Epub 2014 May 6.
Bogetz JF, Trowbridge A, Lewis H, Jonas D, Hauer J, Rosenberg AR. Forming Clinician-Parent Therapeutic Alliance for Children With Severe Neurologic Impairment. Hosp Pediatr. 2022 Mar 1;12(3):282-292. doi: 10.1542/hpeds.2021-006316.
Bogetz J, Ayala E, Anderson J, Morris L, Barton KS, Bradford MC, Zhou C, Yi-Frazier J, Watson RS, Rosenberg AR. A photo-narrative intervention protocol for clinicians and parents of children with severe neurological impairment in the PICU. Contemp Clin Trials Commun. 2025 Feb 11;44:101455. doi: 10.1016/j.conctc.2025.101455. eCollection 2025 Apr.
Provided Documents
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Document Type: Study Protocol and Statistical Analysis Plan
Other Identifiers
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STUDY00004439
Identifier Type: -
Identifier Source: org_study_id
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