DOCUMENT 24 FOI 25/26-1343 Research paper

           OFFICIAL     For Internal Use Only

Rehabilitation after Selective Dorsal Rhizotomy

for children with Cerebral Palsy

The content of this document is OFFICIAL.

Please note:

The research and literature reviews collated by our TAB Research Team are not to be shared external to the Branch. These are for internal TAB use only and are intended to assist our advisors with their reasonable and necessary decision-making.

Delegates have access to a wide variety of comprehensive guidance material. If Delegates require further information on access or planning matters they are to call the TAPS line for advice.

The Research Team are unable to ensure that the information listed below provides an accurate & up-to-date snapshot of these matters

Research question: When is the post SDR specific intensive rehabilitation period considered to have ceased i.e., 6 weeks, 12 weeks, 6 months etc.?

Date: 15/10/2021 Requestor: Shane redacted: s22(1)(a)(ii) - irrelevant material Endorsed by (EL1 or above): Julie redacted: s22(1)(a)(ii) - irrelevant material

Cleared by:

1. Contents

Rehabilitation after Selective Dorsal Rhizotomy for children with Cerebral Palsy …………………. 1

Contents ……………………………………………………………………………………………………….. 1
Summary ………………………………………………………………………………………………………. 2
Selective Dorsal Rhizotomy in Australia …………………………………………………………….. 2
Rehabilitation after SDR ………………………………………………………………………………….. 3

4.1   In hospital rehabilitation ............................................................................................. 3

4.2   Post-discharge rehabilitation ..................................................................................... 3

5. Reasonable and necessary ……………………………………………………………………………… 4

Correspondence …………………………………………………………………………………………….. 5
References ……………………………………………………………………………………………………. 7

V0.1 2021-10-15 Rehab after SDR Page 1 of 9 OFFICIAL Page 554 of 595

Research paper

           OFFICIAL     For Internal Use Only

8. Version control ……………………………………………………………………………………………….. 9

2. Summary

Selective Dorsal Rhizotomy (SDR) is a neurosurgical technique that aims to improve lower limb spasticity in people with cerebral palsy (CP) by selectively cutting the nerve fibres in the spine responsible for aberrant signals to the limbs. Extensive rehabilitation is required after the procedure. There is little consensus about the most appropriate rehabilitation protocols. Duration of rehabilitation varies between 6 and 24 months. There can be considerable overlap between therapies and supports required for rehabilitation and therapies that children with CP would tend to receive even without the surgery. This creates some difficulty in determining reasonable and necessary supports to include in a participant’s plan.

3. Selective Dorsal Rhizotomy in Australia

SDR surgery in Australia began in 2003. Australian neurosurgeons have performed this surgery 44 times between 2003 and 2019, though as of 2021 there are at least 70 children currently registered as having had the surgery and living in Australia [2,3]. Here SDR is currently only performed on children, though adults may receive the surgery overseas [4]. Some children also travel overseas to have the surgery if they do not meet the selection criteria at any Australian institution. Three hospitals in Australia can perform the surgery:

Children’s Hospital at Westmead
Royal Melbourne Children’s Hospital
Queensland Children’s Hospital in Brisbane [2,3]

According to Lewis et al, surgeons at these hospitals were trained to perform SDR by a visiting surgeon affiliated with Gillette Children’s Specialty Healthcare and The Shriners Hospitals for Children, Minnesota. Surgical and rehabilitative protocols in use in Australia are based on those in use at these institutions [2,5].

Typically the procedure is only performed on children with CP who are ambulatory, however some have argued for expansion to children with greater mobility difficulties [6,7]. Selection criteria vary between institutions but may include:

diagnosed with cerebral palsy
spasticity in lower limbs
levels I, II or III on Gross Motor Function Classification Scale (GMFCS)
able to engage in intense rehabilitation programme
no previous orthopaedic surgeries
lack of severe contractures
no excessive weakness of antigravity muscles

V0.1 2021-10-15 Rehab after SDR Page 2 of 9 OFFICIAL Page 555 of 595

Research paper

           OFFICIAL     For Internal Use Only

no other movement disorders [2,5].

4. Rehabilitation after SDR

4.1 In hospital rehabilitation

Shortly after surgery, a period of intensive rehabilitation begins. Rehabilitation can start as early as the day after surgery. Time that the child spends in hospital will vary depending on the child, any post-surgery complications and the policy of the particular institution [8,Table 1]. Children’s Hospital at Westmead recommends exercises begin at 4 days post-surgery and intensive in-hospital rehabilitation continue for 4 – 6 weeks [9]. Queensland Children’s Hospital generally discharges after 4 weeks [1]. Gillette Children’s Speciality Healthcare in USA recommends rehabilitation commence around the third day post-surgery and continue for 4-6 weeks [5]. Leeds Children’s Hospital commences rehabilitation at around day 4 and usually discharges the child on the same day. The child returns to the hospital for daily physiotherapy for 3 weeks at which point the child continues with an exercise and therapy program [10].

4.2 Post-discharge rehabilitation

After discharge there is an extensive period of rehabilitation required to improve the patient’s mobility. Rehabilitation can include physiotherapy, hydrotherapy, prescription of ankle-foot orthoses and encouragement to engage in regular daily activities [8,11]. Veerbeek et al note that a focus on functional mobility can improve chances of positive long term outcomes for the patient [12].

The recommended length of this period of rehabilitation varies. There is still debate about the best rehabilitation protocols [2,8,13,14]. The latest guidelines from the National Institute for Health and Clinical Excellence (NICE) suggest that rehabilitation is given for “several months” post-surgery [15]. The previous version of this guidance offered a more specific “three months to one year” [16]. This indicates increased contestation around rehabilitation protocols. Leeds Children’s Hospital recommends physiotherapy for up to 2 years [10]. Queensland Children’s hospital advises that improvements can be seen with rehabilitation up to 2 years after surgery [1].

After their review of the literature, Colvin and Thomas describe current practice as between 9 and 24 months post-operative therapy [14]. Cawker and Aquilina confirm that evidence supports intensive rehabilitation period of up to 2 years [13]. Lewis et al argue that it is difficult to settle on a recommended rehabilitation period as extant research varies in rehabilitation protocol and duration [2]. Nicolini-Panisson et al suggest post-operative rehabilitation generally lasts around one year, though their research shows a spread of between 6 months and 2 years [8,Table 1].

The Academy of Paediatric Physical Therapy, part of the American Physical Therapy Association, is currently developing a clinical practice guideline for physical/occupational

V0.1 2021-10-15 Rehab after SDR Page 3 of 9 OFFICIAL Page 556 of 595

Research paper

           OFFICIAL     For Internal Use Only

therapies for children with CP who have SDR. This is not due for publication until 2024. The project lead for the development of this guideline advised me that even after publication “the line between rehabilitation and habilitation can be blurry” [6. Correspondence].

Table 1. Characteristics of physiotherapy protocols after SDR [8]

5. Reasonable and necessary

According to the Disability Related Health Support Operational Guideline, NDIS will not fund post-acute services defined as “follow-up care after a person’s hospital stay, often by allied health services, and can include admitted or community-based rehabilitation”. NDIS will also not fund time-limited health supports that are not required on an ongoing basis.

V0.1 2021-10-15 Rehab after SDR Page 4 of 9 OFFICIAL Page 557 of 595

Research paper

           OFFICIAL     For Internal Use Only

Physiotherapy following SDR would appear to satisfy the definition of post-acute care and non- ongoing health supports. Therapy following SDR is an essential aspect of the treatment protocol [13]. Even if the precise duration of the therapy is not possible to specify in advance, it is time-limited, lasting anywhere between 6 months and 2 years. In this case, it would seem clear that SDR rehabilitation does not satisfy s34.1(f) as post-acute time limited therapies are the responsibility of the health system.

However, there are a few issues which demonstrate how “the line between rehabilitation and habilitation can be blurry”. Firstly, the surgery is often performed on very young children who are still growing and developing physically. Without SDR, these children may be eligible for early intervention therapies that aim to assist them to approach the level of mobility of their peers. This is something that NDIS may fund. Further, some rehabilitation protocols prescribe Ankle-Foot orthoses. However, children with CP may require AFOs for the ongoing management of their disability.

The SDR treatment guide for Gillette Children’s Speciality Healthcare states:

If, before the rhizotomy, your child was having occupational therapy, speech therapy, or therapy related to emotional or behavioral functioning, recommendations for those therapies usually don’t change as a result of the surgery. After returning home, your child can resume these therapies at the same frequency as before the surgery [5].

A few studies have described occupational therapy, hydrotherapy, or hippotherapy as aspects of the post-surgical rehabilitative care protocols [8,11].

These three examples show that supports may be both an expected part of a child’s ongoing care and also a prescribed feature of their rehabilitation program. Ultimately it may be difficult to distinguish between supports required to: i) support a child to develop age appropriate capacities; and ii) realise the gains made possible by SDR. In fact, the same supports might be aimed towards both goals.

6. Correspondence

From: redacted: s22(1)(a)(ii) - irrelevant material

Sent: Thursday, 14 October 2021 11:35 AM To: redacted: s22(1)(a)(ii) - irrelevant material, Aaron redacted: s22(1)(a)(ii) - irrelevant material

Subject: RE: Duration of physical therapy after SDR [SEC=OFFICIAL]

Hi Aaron-

What seems like it might be an easy project, certainly does not have a straightforward answer! I’m learning a lot about the process of writing clinical practice guidelines. Our group is making

V0.1 2021-10-15 Rehab after SDR Page 5 of 9 OFFICIAL Page 558 of 595

Research paper

           OFFICIAL     For Internal Use Only

slow progress but we’re a long way away from having and recommendations to share or publish.

This is a recent reference that summarizes rehabilitation protocols following SDR, but it is not very detailed:

DOI: 10.1590/1984-0462/;2018;36;1;00005

Something that you might also consider is that most children who undergo SDR are still developing and have not reached a plateau in their mobility or ADL function prior to surgery. Although you might be able to use measures to identify when a child returns to their prior level of function after SDR, for many children the long-term goal after SDR is to exceed their baseline level of function. So, the line between rehabilitation and habilitation can be blurry.

Best of luck to you as you tackle this project!

redacted: s22(1)(a)(ii) - irrelevant material , PT

Physical Therapist and Clinical Educator

Board-certified in Neurologic Physical Therapy

Gillette Children’s Specialty Healthcare

redacted: s22(1)(a)(ii) - irrelevant material

redacted

From: redacted: s22(1)(a)(ii) - irrelevant material, Aaron Sent: Wednesday, 13 October 2021 12:17 PM To: redacted: s22(1)(a)(ii) - irrelevant material Subject: Duration of physical therapy after SDR [SEC=OFFICIAL]

Hi redacted: s22(1)(a)(ii) - irrelevant material

I hope you don’t mind my reaching out to you. I noticed you are the contact for the development of the APTA clinical guideline on physical and occupational therapy for children with CP who have had selective dorsal rhizotomy.

V0.1 2021-10-15 Rehab after SDR Page 6 of 9 OFFICIAL Page 559 of 595

Research paper

           OFFICIAL     For Internal Use Only

I am currently completing a short research project for the National Disability Insurance Agency, the organisation that administers Australia’s National Disability Insurance Scheme.

I’ve been asked to look into duration of the rehabilitation period after SDR. From what I have seen so far, duration of physical therapy tends to vary between 6 months and 2 years. Current NICE guidelines suggest “several months” but do not specify.

Are you able to point me to any recent research that might suggest how long the post- operative rehabilitation period might last? I understand it is likely to vary with individuals as well, so I am also curious how rehabilitation therapists might determine when a patient has reached their post-operative baseline.

Any advice would be very much appreciated.

Thanks and all the best

Aaron redacted: s22(1)(a)(ii) - irrelevant material

Research Officer

National Disability Insurance Agency Email redacted: s22(1)(a)(ii) - irrelevant material

7. References

[1] Children’s Health Queensland. Selective dorsal rhizotomy fact sheet [Internet]. Queensland Government: Brisbane. 2018 [cited 2021 Oct 14]. Available from: https://www.childrens.health.qld.gov.au/fact-sheet-selective-dorsal-rhizotomy/

[2] Lewis J, Bear N, Baker F, Fowler A, Lee O, McLennan K, et al. Australian children undergoing selective dorsal rhizotomy: protocol for a national registry of multidimensional outcomes. BMJ Open. 2019;9(4):e025093.

[3] The Australian Selective Dorsal Rhizotomy Registry. Report 2019-2020. ASDRR: Sept 2020. [cited 2021 Oct 14]. Available from: https://www.ausacpdm.org.au/wp- content/uploads/2020/10/The-Australian-SDR-Registry-Report-2019-2020.pdf

V0.1 2021-10-15 Rehab after SDR Page 7 of 9 OFFICIAL Page 560 of 595

Research paper

           OFFICIAL     For Internal Use Only

[4] Park TS, Dobbs MB, Cho J. Evidence supporting selective dorsal rhizotomy for treatment of spastic cerebral palsy. Cureus. 2018;10(10):e3466.

[5] Gillette Children’s Specialty Healthcare. Selective Dorsal Rhizotomy (SDR) Surgery [Internet]. Gillette Children’s Specialty Healthcare: St Paul Minnesota. Nov 2019. [cited 2021 Oct 14]. Available from: https://www.gillettechildrens.org/conditions-care/selective-dorsal- rhizotomy-sdr-surgery/what-is-rhizotomy-or-sdr-surgery

[6] Wach J, Yildiz ÖC, Sarikaya-Seiwert S, Vatter H, Haberl H. Predictors of postoperative complications after selective dorsal rhizotomy. Acta Neurochir. 2021;163(2):463–74

[7] Davidson B, Fehlings D, Milo-Manson G, Ibrahim GM. Improving access to selective dorsal rhizotomy for children with cerebral palsy. CMAJ. 2019;191(44):E1205–6.

[8] Nicolini-Panisson RD, Tedesco AP, Folle MR, Donadio MVF. Selective dorsal rhizotomy in cerebral palsy: Selection criteria and postoperative physical therapy protocols. Rev Paul Pediatr. 2018;36(1):9.

[9] Children’s Hospital at Westmead. Selective Dorsal Rhizotomy: Patient Management [Practice Guideline]. The Sydney Children’s Hospital Network: Sydney NSW. [cited 2021 Oct 14]. Available from: https://www.schn.health.nsw.gov.au/_policies/pdf/2016-6000.pdf

[10] Leeds Children’s Hospital. SDR Post-Operative Information for Physiotherapists. The Leeds Teaching Hospitals: Leeds, UK. April 2019. [cited 2021 Oct 14]. Available from: https://www.leedsneurosurgery.com/sdr/resources/SDR%20Info%20for%20PT%20updated%2 02019-04.pdf

[11] Oudenhoven LM, van der Krogt MM, Romei M, van Schie PEM, van de Pol LA, van Ouwerkerk WJR, et al. Factors associated with long-term improvement of gait after selective dorsal rhizotomy. Arch Phys Med Rehabil. 2019;100(3):474–80.

[12] Veerbeek BE, Lamberts RP, Fieggen AG, Verkoeijen PPJL, Langerak NG. Daily activities, participation, satisfaction, and functional mobility of adults with cerebral palsy more than 25 years after selective dorsal rhizotomy: a long-term follow-up during adulthood. Disabil Rehabil. 2021;43(15):2191–9.

[13] Cawker S, Aquilina K. Selective dorsal rhizotomy (the perspective of the neurosurgeon and physiotherapist). Paediatr Child Health. 2016;26(9):395–9.

[14] Colvin C, Thomas M. An Evidence-Based Review of Physical Therapy Intervention for Individuals Who Have Undergone a Selective Dorsal Rhizotomy. Paper presented at: American Academy for Cerebral Palsy and Development Medicine 72nd Annual Meeting; Oct 9-13; Cincinnati, Ohio. [cited 2021 Oct 14]. Available from: http://www.aacpdm.org/UserFiles/file/handouts/am18/bsh/BRK4-An-Evidence-based-Review- of-Physical-Therapy-.pdf

V0.1 2021-10-15 Rehab after SDR Page 8 of 9 OFFICIAL Page 561 of 595

Research paper

           OFFICIAL     For Internal Use Only

[15] National Institute for Health and Care Excellence (NICE). Selective Dorsal Rhizotomy for spasticity in cerebral palsy [Practice Guideline]. NICE. Dec 2010. [cited 2021 Oct 14]. Available from: https://www.nice.org.uk/guidance/ipg373

[16] National Institute for Health and Care Excellence (NICE). Selective Dorsal Rhizotomy for spasticity in cerebral palsy [Practice Guideline]. NICE. Dec 2010. [cited 2021 Oct 14]. Available from: https://www.nice.org.uk/guidance/ipg373/documents/selective-dorsal- rhizotomy-for-spasticity-in-cerebral-palsy-interventional-procedure-consultation-document

8. Version control

Version	Amended by	Brief Description of Change	Status	Date
0.1	AHR908	Draft research paper looking into rehabilitation periods for children with cerebral palsy after undergoing selective dorsal rhizotomy	DRAFT	2021-10-15
0.2
0.3
1.0

V0.1 2021-10-15 Rehab after SDR Page 9 of 9 OFFICIAL Page 562 of 595