Table 5.

Parent–Physician Agreement in Key Survey Domains

Survey Domain	% Agreement	95% CI	κ	P Value
Parental understanding of prognosis	71.0	63.6–78.4	0.12*	0.035
Patient functional status	36.1	28.3–44.5	0.17	0.003
Patient symptom burden	45.0	36.8–55.3	0.13	0.051
Parental preparedness for child's medical problems	51.0	43.4–59.8	0.14	0.017
Likelihood of limitations in physical activity	47.7	39.6–55.9	0.30	<0.001
Likelihood of limitations in learning/behavior	27.3	20.4–35.2	–0.15	0.013
Likelihood of needing lifelong interventions	77.9	70.5–84.2	0.70	<0.001
Patient life expectancy	41.3	33.0–50.0	0.24	<0.001
Patient inpatient status at 1 mo	61.3	51.2–70.9	0.45	<0.001

^*Kappa statistic is unreliable (paradoxically low in presence of high agreement) when the distribution of responses is highly imbalanced.