By Naomi Lorch, Ph.D., P.T.
Miyanji, F. Assessing the Risk-Benefit Ratio of Scoliosis Surgery in Cerebral Palsy: Surgery is Worth It.  J. Bone Joint Surg Am. 2018. April 4; 100(7) 556-563.
Sixty nine patients with cerebral palsy completed a multicenter, five year follow-up study after surgery for scoliosis. The study was started with 203 consecutive patients with neuromuscular scoliosis, GMFCS levels IV and V, undergoing instrumented spinal fusion at six contributing center .  Benefits were evaluated based on health-related quality of life (HRQoL) and were measured using the CPCHILD (Caregiver Priorities and Child Health Index of Life with Disabilities).  The questionnaire was completed by parents or primary caregivers.   Significant benefits from surgery were reported on three out of six domains on the CPCHILD  at one year, two years, and five years after surgery.  Gains were evident on the personal care, positioning, and comfort domains.  There were not consistent changes on the communication, general health, and overall quality of life domains of the CPCHILD.  A high rate of complications  from surgery was reported (46.4% at 1 year, 1.4% between 1 and 2 years, and 4.3% at 2 to 5 years postoperatively).  Additional surgery was required for 6 patients within 1 year and 2 other patients within 5 years following the original scoliosis surgery.  It is concluded that in this fragile population, the benefits of surgery outweigh the risks.
The discussion reported two additional studies that found improvements following spinal fusion on the CPCHILD.  It also stated that a study by DeFazio found an increase in the total CPCHILD score one year after surgery and a regression to baseline at two years.  In the current study, in spite of overall gains being reported, there was a reduction of the CPCHILD score for 30% of the patients at  two years and for 29% of patients at three years.
Comments:  Quality of life, as reported by caregivers on the CPCHILD questionnaire, appears to be improved after spinal fusion for the majority of patients who participated in the study for five years.  Almost 2/3 of the patients who started the study did not complete it.  Were a significant number of these families dissatisfied with the results of surgery?  Benefits from the surgery were not found on the health domain of the CPCHILD. An early study by Cassidy (1994)  found a lack of benefit for pain, pulmonary care, decubitii, function,  and time for daily care following spinal stabilization.  The authors reported that the majority of health care workers reported improved comfort.  A study by Tsirikos, A. et. al. (2003) of 288 children with severe cerebral palsy found a reduced life expectancy after spinal fusion.
Is sufficient attention given to the risk of complications and to the high proportion of reductions in the CPCHILD scores after two and five years?  Clinical observations would suggest additional considerations when evaluating the indications for a spinal fusion.  What about the 30 year old college honor roll student at GMFCS level IV who regrets that at the age of 13, following a spinal fusion, she lost the ability to come up to sitting in bed and stand beside the bed independently.  Now she rolls to the side with difficulty, but she cannot come up to sitting, balance in sitting, or stand without assistance.  She had been able to lean forward while sitting but now has hip flexion only to about 60 degrees with extreme extensor spasticity and requires specialized seating accommodations.  A 19 year old woman is often in a large bed because of uncontrolled seizures and fatigue.  Prior to the spinal fusion at the age of 11 or 12, she frequently rolled and came up to sitting.  Afterward, she cried when she realized that she could no longer come up to sitting, and since then she has remained mostly immobile in bed.  Many pros and cons need to be addressed when considering surgery for scoliosis.
Cassidy, C. et. al. A Reassessment of Spinal Stabilization in Severe Cerebral Palsy. J. Pediatric. Orthopedic. (1994), Nov-Dec; 14(6): 731-739.
Tsirikos, A. et. al. (2003) Life Expectancy in Pediatric Patients with Cerebral Palsy and Neuromuscular Scoliosis Who Underwent Spinal Fusion. Developmental Medicine and Child Neurology. 45(10), 677-82.
Naomi Lorch, Ph.D., P.T.