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 Shenkman1,21Department 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, USAPurpose: 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-makin

Developing Item Banks for Measuring Pediatric Generic Health-Related Quality of Life: An Application of the International Classification of Functioning, Disability and Health for Children and Youth and Item Response Theory

<div><p>The purpose of this study was to develop item banks by linking items from three pediatric health-related quality of life (HRQoL) instruments using a mixed methodology. Secondary data were collected from 469 parents of children aged 8-16 years. The International Classification of Functioning, Disability and Health-Children and Youth (ICF-CY) served as a framework to compare the concepts of items from three HRQoL instruments. The structural validity of the individual domains was examined using confirmatory factor analyses. Samejima's Graded Response Model was used to calibrate items from different instruments. The known-groups validity of each domain was examined using the status of children with special health care needs (CSHCN). Concepts represented by the items in the three instruments were linked to 24 different second-level categories of the ICF-CY. Eight item banks representing eight unidimensional domains were created based on the linkage of the concepts measured by the items of the three instruments to the ICF-CY. The HRQoL results of CSHCN in seven out of eight domains (except personality) were significantly lower compared with children without special health care needs (<i>p</i><0.05). This study demonstrates a useful approach to compare the item concepts from the three instruments and to generate item banks for a pediatric population.</p></div

Demographic characteristics (N = 469).

<p>SD: standard deviation.</p><p>Demographic characteristics (N = 469).</p

Known-groups validity for individual domain scores among children with special health care needs (CSCHN) compared with children without special health care needs.

<p>** <i>p</i><0.01.</p><p>*** <i>p</i><0.001.</p>#<p> Controlling for child's age and gender and parent's race and education.</p><p>Known-groups validity for individual domain scores among children with special health care needs (CSCHN) compared with children without special health care needs.</p

Specific items and their linkage to ICF-CY second-level categories for the development of item banks.

<p>Kdscrn: KIDSCREEN-52; Kindl: KINDL-R; Pedsql: PedsQL; nd: not definable; nc: not covered.</p><p>All Kindl items start with “During the past week….”; All Kdscrn items start with “Please try to remember your child's experiences over the last month…”; and all Pedsql items start with “How much of a problem has your child/teen had with…”.</p><p>Specific items and their linkage to ICF-CY second-level categories for the development of item banks.</p

Descriptions of the three pediatric health-related quality of life (HRQoL) instruments used in this study.

<p>Descriptions of the three pediatric health-related quality of life (HRQoL) instruments used in this study.</p

Item parameter estimates using item response theory for individual HRQoL domains.

<p>RMSEA: root mean square error of approximation.</p><p>Item parameter estimates using item response theory for individual HRQoL domains.</p