Selective Dorsal Rhizotomy clinical outcomes

Clinical outcomes are measurable changes in health, function or quality of life that result from our care. Constant review of our clinical outcomes establishes standards against which to continuously improve all aspects of our practice.

About the Selective Dorsal Rhizotomy service

GOSH established its Selective Dorsal Rhizotomy (SDR) service in 2013 and is one of five centres providing the service in England. SDR is an operation used to reduce spasticity (muscle stiffness) in children with cerebral palsy who fulfil specific clinical criteria.

Spasticity can impair movement and coordination, cause pain, and over time can cause shortening of muscles and tendons, joint contractures and bone deformities. Nerve fibres running from the muscles back to the spinal cord play a major role in spasticity. The SDR operation, in which some of these fibres are divided, can be very effective at reducing spasticity and improving quality of life.

SDR is the only procedure to permanently remove spasticity in the legs of children with cerebral palsy. However, it is not a suitable treatment for every patient, so full assessment and preparation are an essential part of the care we provide.

The Gross Motor Function Classification System (GMFCS) is an internationally recognised system for grading gross motor function in children with cerebral palsy. The levels are I to V, where those at level I have the least functional limitations, and those at level V the greatest functional limitations.

The following outcomes relate to children in GMFCS level II-IV who have SDR surgery since 2013 at GOSH. So far, 211 children have had SDR at GOSH and 160 children have completed two-year review. GMFCS level at the time of surgery was: GMFCS level II (59), level III (117), and level IV (32).

The primary aim of SDR is to improve quality of life of all children and their families. However, the specific outcome goals vary depending on the GMFCS level:

GMFCS level II and III - to improve function, mobility and comfort;

GMFCS level IV- to improve comfort and care giving.

Clinical outcome measures

Measures of the treatment effectiveness of SDR include surgical and specialist therapy outcomes.

1. Modified Ashworth Scale (MAS)

The MAS measures resistance during muscle stretching, and is used to assess the effectiveness of treatment to reduce spasticity. A study of 30 children undergoing SDR between 2014 and 2018 recorded average MAS scores for leg muscle groups. We test the lower limbs (adductors, hip flexors, knee flexors and plantar flexion), and they are scored from 0 (normal tone) to 4 (rigid tone). Average scores for all lower limb muscle groups before surgery were between 2 and 4. At two years post-surgery the average score was 0 for 97% of children (n = 29/30) indicating a reduction in spasticity. One child had minimal residual muscle tone in a single muscle group. All 30 children had improvements in MAS scores of one point or more for all muscle groups.

The MAS assessment is completed up to one month prior to surgery, and at six months, one year and two years post-surgery. The average score at each time point is compared to see the early effect of surgery on the child’s spasticity and the effect over time. The data shows that MAS scores improved after surgery, and the improvement sustained over time. SDR is very effective in permanently reducing spasticity.

2. Gross Motor Function Measure (GMFM)

Gross motor skills are involved in the movement, balance and coordination of the body. The GMFM is an internationally recognised standardised assessment tool used by specialist paediatric physiotherapists to evaluate change in gross motor function in children with cerebral palsy. The measure has a 4-point scoring system across the five categories: lying and rolling; sitting; crawling and kneeling; standing; walking, running and jumping. To measure progress after surgical and therapy interventions, we use the GMFM-66, in which a child’s gross motor function is observed and tested against 66 standardised items.

The GMFM-66 assessment is completed pre-surgery, and after surgery at six months, one year and two years post-surgery. The average scores at each time point is compared to see the early effect on of surgery on the child’s gross motor skills and the effect over time.

2.1.1 GMFCS Level II and Level III

We report here data on GMFM-66 for 100 children with GMFCS levels II and III, who had SDR surgery at GOSH between July 2013 and September 2018, i.e. those who are at least two years post-surgery.

The average increase in GMFM-66 for children with a GMFCS level II is 6.18 (from 71.16 pre-surgery to 77.33 two years post-surgery). For children with a GMFCS level III the average increase is 6.25 (from 53.44 pre-surgery to 59.69 two years post-surgery).

Figure 2.1.1 Average GMFM pre- and post-surgery by GMFCS level

SDR Figure 2.1.1 Average GMFM pre- and post-surgery by GMFCS level

The increase in GMFM-66 score for individual children from before surgery to two years post-surgery ranges from 0 to 16.25. A small number of children had a decrease in GMFM-66 score. While children’s GMFM-66 score generally increases at two years post-surgery, some have moderate improvement or maintained function.

2.1.2. Cerebral Palsy Quality of Life (CP QOL-Child)

The CP-QoL is a questionnaire about quality of life for children and young people with cerebral palsy. The questions cover general and social wellbeing, function, physical health, self-esteem, pain, impact of disability, schooling, and family health. We use the primary caregiver questionnaire for all our patients.

The CP-QoL primary caregiver questionnaire is completed pre-surgery, and after surgery at six months, one year and two years post-surgery. An average score is calculated for the seven areas using the answers to individual questions within that area. Scores are based on responses at a specific ‘snapshot’ in time. Below we show the average scores pre-surgery and at two years post-surgery, by GMFCS level.

We report here data on CP-QoL for 67 children with GMFCS levels II and III who had SDR surgery at GOSH between July 2013 and September 2018, i.e. those who are at least two years post-surgery.

Table 2.1.2 Average CP-QoL scores at pre- and two years post-surgery by GMFCS, Level II and III

GMFCS level Pre-surgery Two years post-surgery
Social wellbeing and acceptance
GMFCS
Level II (n = 19)
73.1 78.9
GMFCS
Level III (n = 48)
79.2 76.1
Feelings about functioning
GMFCS
Level II (n = 19)
70.4 75.5
GMFCS
Level III (n = 48)
67.9 71.8
Participation and physical health
GMFCS
Level II (n = 19)
60.5 64.7
GMFCS
Level III (n = 48)
55.7 60.3
Emotional wellbeing and self-esteem
GMFCS
Level II (n = 19)
74.9 79.3
GMFCS
Level III (n = 48)
77.8 77.9
Access to services
GMFCS
Level II (n = 19)
45.3 43.4
GMFCS
Level III (n = 48)
44.1 43.4
Pain and impact of disability*
GMFCS
Level II (n = 19)
33.8 32.2
GMFCS
Level III (n = 48)
35.9 34.0
Family health
GMFCS
Level II (n = 19)
71.7 80.4
GMFCS
Level III (n = 48)
65.5 68.8

* For ‘pain and impact of disability’ section a lower average score indicates a reduction in pain and impact of disability.

For questions on feelings about functioning; participation and physical health; and family health the average CP-QoL caregiver scores increase between pre-surgery and 2 years post-surgery for children with a GMFCS level II or III.

For questions on the pain and impact of disability the average scores decrease (indicates a reduction in pain and impact of disability) between pre-surgery and 2 years post-surgery.

For questions on social wellbeing and acceptance, the average scores increase for children with a GMFCS level II, but decrease for children with a GMFCS level III.

For questions on emotional wellbeing and acceptance the average scores increase for children with a GMFCS level II and stays the same for children with a GMFCS level III.

For questions on access to services the average scores decreases for children with a GMFCS level II or III.

2.2.1 GMFCS Level IV

SDR can be suitable for some children with more severe cerebral palsy (GMFCS level IV) where spasticity causes pain and makes it hard for children to be positioned and cared for. Goals for surgery in this group are comfort and care related. Currently SDR is not commissioned by UK NHS services for GMFCS level IV. Where it is felt to be an appropriate treatment it is offered as a self-funded procedure.

We report here data on GMFM-66 for 25 children with GMFCS level IV who had SDR surgery at GOSH between July 2013 and September 2018, i.e. those who are at least two years post-surgery.

Figure 2.2.1 Average GMFM pre- and post-surgery by GMFCS level IV

SDR Figure 2.2.1 Average GMFM pre- and post-surgery by GMFCS level IV

The increase in GMFM-66 score for individual children from before surgery to two years post-surgery ranges from 0 to 12.01. While children’s GMFM-66 score generally increases at two years post-surgery, some have moderate improvement or maintained function. One child had a small decrease in GMFM-66 score.

2.2.2. CP-QoL, Level IV

We report here data on CP-QoL for 13 children with GMFCS level IV who had SDR surgery at GOSH between July 2013 and September 2018, ie those who are at least two years post-surgery.

Table 2.2.2 Average CP-QoL scores at pre- and two years post-surgery by GMFCS, Level IV

GMFCS level IV ( n=13) Pre-surgery Two years post-surgery
Social
wellbeing and acceptance
77.2 75.6
Feelings
about functioning
63.6 63.4
Participation
and physical health
50.1 55.4
Emotional wellbeing and self-esteem 78.4 72.9
Access
to services
40.9 44.7
Pain
and impact of disability*
43.1 36.4
Family Health 59.6 66.7

* For ‘pain and impact of disability’ section a lower average score indicates a reduction in pain and impact of disability.

For questions on participation and physical health; access to services, and family health the average CP-QoL caregiver scores increase between pre-surgery and 2 years post-surgery for children with a GMFCS level IV.

For questions on the pain and impact of disability the average scores decrease (indicates a reduction in pain and impact of disability) between pre-surgery and 2 years post-surgery.

For questions on feelings about functioning the average scores stay the same between pre-surgery and 2 years post-surgery.

For questions on social wellbeing and acceptance; and emotional wellbeing and self-esteem, the average scores decrease between pre-surgery and 2 years post-surgery.

3. Complications of SDR surgery

For all patients undergoing SDR at GOSH we record complications. We are currently working on publishing the full range of measures for all our patients.

Every surgical procedure carries risk. It is essential to collect data on complications or ‘adverse events’ to have an accurate understanding of both risk and surgical performance. This is turn informs the consent process for future patients and their families considering surgery. We collect data on the following complications associated with SDR surgery: surgical site infection (superficial incisional; deep incisional; organ/space); bleeding that requires return to theatre; cerebrospinal fluid (CSF) leak; and permanent incontinence due to surgery.

Table 3.1 Complications of SDR surgery, 2013/14 to 2018/19

Year Total number of operations Infection Bleeding that requires return to
theatre
CSF leak Permanent incontinence due to surgery
2013/14* 12 0 0 0 0
2014/15 23 1 (superficial) 0 0 0
2015/16 32 0 0 0 0
2016/17 32 0 0 0 0
2017/18 23 0 0 0 0
2018/19 28 0 0 0 0
2019/20 34 0 0 0 0
2020/21 21 0 0 0 0
Total 205 1 0 0 0

*SDR surgery commenced in July 2013, so the 2013/14 figures span nine months.

This information was published in June 2021.

References

Summers, J et al., Selective dorsal rhizotomy in ambulant children with cerebral palsy: an observational cohort study, The Lancet Child & Adolescent Health, 2019, https://doi.org/10.1016/S2352-4642(19)30119-1

McLaughlin, J. et al., Selective dorsal rhizotomy: meta-analysis of three randomized controlled trials, Developmental Medicine & Child Neurology, 2002, 44: 17–25.

Engsberg, J.R. et al., Effect of selective dorsal rhizotomy in the treatment of children with cerebral palsy, Journal of Neurosurgery, 2006, 105(1 Supplement): 8–15.

Nordmark, E. et al., Long-term outcomes five years after selective dorsal rhizotomy, BMC Pediatrics, 2008, 8:54.

van Schie, P. E. M. et al., Short- and long-term effects of selective dorsal rhizotomy on gross motor function in ambulatory children with spastic diplegia, Journal of Neurosurgery Pediatrics, 2011, 7:557-562.