Table 4 Importance of Information about Different Conditions: Very Important or Extremely Important responses
Condition Type | N (%) (N = 201) |
|---|---|
Childhood onset - Death soon after birth | 176 (88.0%) |
Childhood onset - Death first year of life | 178 (89.0%) |
Childhood onset - Mild impact on child’s QoL | 138 (69.0%) |
Childhood onset - Moderate impact on child’s QoL | 157 (78.9%) |
Childhood onset – Severe impact on child’s QoL | 178 (89.0%) |
Childhood onset - Impact on QoL unknown | 146 (73.4%) |
Adult onset condition | 121 (60.5%) |