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NCT01289444 · ClinicalTrials.gov registry record · NA
Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle
A NA study, sponsored by Maureen Lyon.
- Completed
- Registry status
- NA
- Development phase
- 216
- Enrollment target
NCT01289444: Completed NA study, sponsored by Maureen Lyon.
NCT01289444 is a NA study that has completed, run by Maureen Lyon. The registered enrollment target is 216 participants, below the 1,404-participant average among 58,714 other NA trials with a reported enrollment target (85% lower). According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT01289444, a NA study, has completed, sponsored by Maureen Lyon.
- COMPLETED
- Registry status
- NA
- Development phase
- 216 participants
- Enrollment target
Study Summary
Our goal is to advance palliative care to adolescents and their families. We hope our study will decrease suffering (psychological, spiritual, physical) and increase quality of life (QOL). Left unprepared for end-of-life decisions, miscommunication and disagreements may result in families being charged with neglect or court battles over treatment choices. FAmily CEntered (FACE) Advance Care Planning helps prepare adolescents with HIV/AIDS and their families for future medical decisions. We hope to increase families' understanding of their teens' wishes for end-of-life care and to decrease conflict. We will also study communication and spiritual struggle Families will be randomized into the either the Control (N=65 families) or FACE Intervention (N=65 families). FACE families will meet with a trained/certified researcher for three 60- to 90-minute sessions scheduled one week apart: Session 1: Lyon Advance Care Planning Survey© - Adolescent and Surrogate Versions: Session 2: The Respecting Choices Interview® Session 3: Completion of The Five Wishes©. Control families will also meet with a researcher for three 60-to 90-minute sessions scheduled one week apart: Session 1: Developmental History, Session 2: Safety Tips, and Session 3: Nutrition. Questionnaires will be administered five times, when first seen, at 3, 6, 12 and 18 months from the time of Session 3. Hypothesis 1: Compared to an active control, FACE will relieve psychological suffering by 1) increasing congruence in treatment preferences between teens with AIDS and their surrogates, 2) decreasing decisional conflict regarding EOL decision making for future medical treatment in adolescents with AIDS; 3) increasing quality communication about EOL care in adolescent/legal guardian or surrogate dyads; 4) and maximizing QOL. Hypothesis 2: In addition to the direct effects, FACE will also indirectly affect QOL through dimensions of threat appraisal. Hypothesis 3: FACE will have stronger effects on the QOL measures
Primary Outcome
Measured by the Statement of Treatment Preferences
Interventions
- BEHAVIORAL Healthy Living Control
- BEHAVIORAL FAmily CEntered (FACE) ACP
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 216 participants |
| Start Date | 2011-07 |
| Est. Completion | 2014-07 |
| Phase | NA |
What the finished NCT01289444 record still lists
NCT01289444 is an interventional study that assigns participants to a tested intervention. The registered 216 participants enrollment target is mid-sized for trials with a published cap, below the 1,404-participant average among 58,714 other NA trials with a reported enrollment target (85% lower).
The record links to 0 conditions, and to 2 interventions - of which Healthy Living Control is the first listed.
NCT01289444 does not publish any study locations in the registry export this page uses.
Frequently Asked Questions
What is clinical trial NCT01289444 about?
NCT01289444 is a clinical study titled "Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle". Our goal is to advance palliative care to adolescents and their families. We hope our study will decrease suffering (psychological, spiritual, physical) and increase quality of life (QOL). Left unprepared for end-of-life decisions, miscommunication and disagreements may result in families being char...
What is the current status of trial NCT01289444?
This trial is currently completed. It is a NA study. The enrollment target is 216 participants. The study started on 2011-07. Estimated completion is 2014-07.
What interventions are being tested in trial NCT01289444?
The interventions under investigation include: Healthy Living Control (BEHAVIORAL), FAmily CEntered (FACE) ACP (BEHAVIORAL).
Who is sponsoring clinical trial NCT01289444?
This trial is sponsored by Maureen Lyon, which has 5 total clinical trials registered on ClinicalTrials.gov.
Learn More About Clinical Trials
How this trial's enrollment target compares
Where NCT01289444's enrollment target sits among peer trials
216 485th of 2000 higher than 1,514 of 2,000 other NA trials
participants (enrollment target), bucketed by value
Each bar is a band; taller bars hold more other NA trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.
Source ClinicalTrials.gov registry export · 2026-08-08
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