PROVISION OF QUALITY OF LIFE INFORMATION AND PHYSICIAN TRUST AMONG FAMILIES OF CHILDREN WITH LIFE-LIMITED CONDITIONS

Author(s)

I-Chan Huang, PhD, Assistant Professor, Caprice Knapp, PhD, Research Assistant Professor, Elizabeth Shenkman, PhD, ProfessorUniversity of Florida, Gainesville, FL, USA

OBJECTIVES To examine what information that parents of children with life-limiting conditions want from physicians and whether the provision of this information promotes parents' trust in physicians. METHODS We conducted telephone surveys from November 2007 through April 2008 with a random sample of 266 parents whose children had life-limiting conditions and enrolled in Florida's State Title V Children with Special Health Care Needs Program. Parents were asked if they wanted information about the following: the child's quality of life, pain relief, prognosis, incorporating spiritual beliefs into the treatment plan, how treatments might change the child's appearance, and clinical examination/laboratory results. We used the Wake Forest Physician Trust Scale to measure parent's trust in physicians. We tested the relationships between parent's age, race/ethnicity, education, marital status, and parent-reported children's health status and desired information. We also tested whether provision of this desired information was associated with greater trust in physicians. RESULTS Most parents wanted information on their children's quality of life (95%), followed by the prognosis (88%) and pain relief (84%). Forty-nine percent of the parents desired advice from family/friends. Compared to parents with a high school education or higher, parents with less than a high school education showed a greater desire for information on pain relief and spiritual belief (p<0.05). Compared to White non-Hispanic parents, Hispanic and Black non-Hispanic parents showed a greater desire for information on the child's prognosis, incorporating spiritual beliefs into the treatment plan, and the impact of the treatment on the child's appearance (p<0.05). Providing information on children's quality of life and pain relief was associated with greater trust in physicians after adjusting for parental characteristics (p<0.05). CONCLUSIONS Parents wanted information on their children's quality of life more so than any other information category. Providing this information along with information about pain relief increased the families' trust in the physicians.

Conference/Value in Health Info

2009-05, ISPOR 2009, Orlando, FL, USA

Value in Health, Vol. 12, No. 3 (May 2009)

Code

PCN91

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes, Stated Preference & Patient Satisfaction

Disease

Oncology, Pediatrics

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