Clinical trial NCT01163136: Decision Making in Serious Pediatric Illness
Official title: Decision Making in Serious Pediatric Illness
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Parental Decision Making for Seriously Ill Children
Keywords: Parental decision making
Decision Making in Serious Pediatric Illness (DSPI)
palliative care decision making
Lead sponsor: Children's Hospital of Philadelphia
Sponsor class: OTHER
Collaborators: name: National Institute of Nursing Research (NINR)
First posted: 2010-07-15
Enrollment: 358
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Parents of children of age \< 18 years or cognitively impaired such that their parents make all medical decisions on their behalf; and of either gender and any race/ethnicity who are patients at The Children's Hospital of Philadelphia (CHOP) admitted to the neonatal, pediatric, or cardiac intensive care unit (CICU), neonatal intensive care unit (NICU), or pediatric intensive care unit (PICU), or who have been referred to the Pediatric Advanced Care Team (PACT) for palliative care services.

Brief summary: This study will look at a cohort of parents whose children are confronting life-threatening illnesses in intensive care, palliative care, and complex care settings, to test whether parents with higher levels of hopeful patterns of thinking are subsequently more likely a) to change the "level of care" order status of their child (as an important and demonstrable example of adapting goals); b) to reprioritize goals for the child when they are reassessed regarding goals ; and c) to report a higher degree of achieving self-defined 'good parent' attributes.

Detailed description: Parents making medical decisions for a child living with a life-threatening condition confront, sometimes repeatedly, an extremely daunting task: how to decide when to set aside the therapeutic goal of cure or of life prolongation and instead prioritize the goals of comfort or quality of life.

This study will look at a cohort of parents whose children are confronting life-threatening illnesses in intensive care, palliative care, and complex care settings, to test whether parents with higher levels of hopeful patterns of thinking are subsequently more likely a) to change the "level of care" order status of their child (as an important and demonstrable example of adapting goals); b) to reprioritize goals for the child when they are reassessed regarding goals ; and c) to report a higher degree of achieving self-defined 'good parent' attributes.

We hypothesize that parents with higher levels of hopeful patterns of thinking subsequently will be:

More likely to enact a limit of intervention order. More likely, upon explicit formal reassessment, to reprioritize goals for the child.

More likely to report a higher degree of achieving self-defined 'good parent' attributes.

Eligibility criteria: Inclusion Criteria:

* Parents of children who are patients at The Children's Hospital of Philadelphia (CHOP) admitted to the neonatal, pediatric, or cardiac intensive care unit (NICU, PICU, or CICU), or who have been referred to the Pediatric Advanced Care Team (PACT) for palliative care services. A patient is eligible when the patient's attending physician considers it likely that parents will have major treatment decisions to make for their child within the coming 12 to 24 months.

Exclusion Criteria:

* Non English-speaking parents

Primary outcomes:
measure: Parents' reprioritized goals
timeFrame: up to 2 years
Secondary outcomes:
measure: Parents' self-defined 'good parent' attributes
timeFrame: up to 2 years
Other outcomes:
Locations:
city: Philadelphia
country: United States
facility: The Children's Hospital of Philadelphia
state: Pennsylvania
Study officials:
affiliation: Children's Hospital of Philadelphia
name: Chris Feudtner, MD, PhD, MPH
role: PRINCIPAL_INVESTIGATOR
References: