Trial reportContemporary clinical trials2012
Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle (FACE): design and methods.
Trial report in Contemporary clinical trials, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01289444 (Longitudinal Pediatric Palliative Care), which is not on this map. Cited by 11 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle
Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Advance care planning for haemodialysis patients.The Cochrane database of systematic reviews · 2016Pooled it
- Advance Care Planning and HIV Symptoms in Adolescence.Pediatrics · 2018Trial
- Trial
- The Role of Religiousness/Spirituality in Health-Related Quality of Life Among Adolescents with HIV: A Latent Profile Analysis.Journal of religion and health · 2016Trial
- Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review.Children (Basel, Switzerland) · 2022Review
- The Effect of FAmily-CEntered (FACEJournal of family nursing · 2020Article
- The influence of religious beliefs and practices on health care decision-making among HIV positive adolescents.AIDS care · 2020Article
- Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families.BMJ supportive & palliative care · 2019Article
- Spirituality and religion among HIV-infected individuals.Current HIV/AIDS reports · 2013Review
- Pediatric palliative care for youth with HIV/AIDS: systematic review of the literature.HIV/AIDS (Auckland, N.Z.) · 2013Article
- The Science to Spirituality in Paediatric Palliative Care: A Commentary.Indian journal of palliative careArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
As life expectancy increases for adolescents ever diagnosed with AIDS due to treatment advances, the optimum timing of advance care planning is unclear. Left unprepared for end-of-life (EOL) decisions, families may encounter miscommunication and disagreements, resulting in families being charged with neglect, court battles and even legislative intervention. Advanced care planning (ACP) is a valuable tool rarely used with adolescents. The Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle study is a two-arm, randomized controlled trial assessing the effectiveness of a disease specific FAmily CEntered (FACE) advanced care planning intervention model among adolescents diagnosed with AIDS, aimed at relieving psychological, spiritual, and physical suffering, while maximizing quality of life through facilitated conversations about ACP. Participants will include 130 eligible dyads (adolescent and family decision-maker) from four urban cities in the United States, randomized to either the FACE intervention or a Healthy Living Control. Three 60-minute sessions will be conducted at weekly intervals. The dyads will be assessed at baseline as well as 3-, 6-, 12-, and 18-month post-intervention. The primary outcome measures will be in congruence with EOL treatment preferences, decisional conflict, and quality of communication. The mediating and moderating effects of threat appraisal, HAART adherence, and spiritual struggle on the relationships among FACE and quality of life and hospitalization/dialysis use will also be assessed. This study will be the first longitudinal study of an AIDS-specific model of ACP with adolescents. If successful, this intervention could quickly translate into clinical practice.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.