Background: This study was performed to identify issues of concern to parents after single-event multilevel surgery in ambulatory patients with cerebral palsy.
Methods: Parents' reports of concern were obtained for 72 ambulatory patients with hemiplegic cerebral palsy (group H; mean age 8.7 y) and 170 ambulatory patients with diplegia (group D; mean age 8.9 y), who had undergone single-event multilevel surgery and were followed for more than 1 year (mean follow-up 5.5 y). Data were acquired using a postal survey. Issues of concern to parents were evaluated using a 5-point Likert scale (1 to 5) for each of 33 items, which was designed for this study.
Results: The top 3 issues of concern after surgery were unequal limb circumference, the operative scar, and recurrence in group H, and the operative scar, play activity, and recurrence in group D. Overall concerns were greater in group D (P=0.001) whereas group H was more concerned about appearance such as unequal leg length and circumference (P=0.001, <0.001). The issue of concern that showed the best correlation with parental satisfaction was the insufficient rehabilitation in group H (r=-0.457, P<0.001) and the improvement in walking ability in group D (r=-0.552, P<0.001).
Conclusions: Even though parental concern over insufficient rehabilitation and improvement in walking ability showed the best correlation with parental satisfaction, related issues such as unequal leg circumference and surgical scar scored high, which appear irrelevant to the purpose of the surgical procedures. Parents' understanding should be established regarding surgical outcomes and limitations before single-event multilevel surgery. Clinicians need to pay more attention to potentially treatable issues that cause concern to parents, such as operative scars.
Level of evidence: Diagnostic level 3.