Quality of life information and trust in physicians among families of children with life-limiting conditions
I-Chan Huang1,2, Kelly M Kenzik1, Tuli Y Sanjeev3, Patricia D Shearer3, Dennis A Revicki4, John A Nackashi3, Elizabeth A Shenkman1,2
1Department of Health Outcomes and Policy, 2Institute for Child Health Policy, 3Department of Pediatrics, College of Medicine, University of Florida, Gainesville, Florida; 4United BioSource Corporation, Maryland, USA
Purpose: To examine information that parents of children with life-limiting conditions want to discuss with children’s physicians to assist decision-making, and whether the desire for this information is associated with parents’ trust in physicians.
Study design: A cross-sectional study using a telephone survey.
Patients and methods: Subjects comprised a random sample of 266 parents whose children were enrolled in Florida’s Medicaid Program. Parents were asked if they wanted to discuss information related to their children’s treatment, including quality of life (QOL), pain relief, spiritual beliefs, clinical diagnosis/laboratory data, changes in the child’s behavior due to treatment, changes in the child’s appearance due to treatment, chances of recovery, and advice from the physician and family/friends. The Wake Forest Physician Trust Scale was used to measure parents’ trust in physicians. We tested the relationships between parents’ age, race/ethnicity, education, parent-reported children’s health status, and the desired information. We also tested whether the desire for information was associated with greater trust in physicians.
Results: Most parents wanted information on their children’s QOL (95%), followed by chance of recovery (88%), and pain relief (84%). Compared with nonHispanic whites, nonHispanic blacks and Hispanics showed a greater desire for information and achieve to discuss QOL information had greater trust in their children’s physicians than other information after adjusting for covariates (P < 0.05).
Conclusions: Among children with life-limiting conditions, QOL is the most frequently desired information that parents would like to receive from physicians as part of shared decision-making. Parents’ desire for QOL information is associated with greater trust in their children’s physicians.
Keywords: children, information, life-limiting condition, quality of life, shared decision-making
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