Malignant Spinal Cord Compression Past, Present and Future (South East of Scotland) Jackie Whigham Macmillan Project Manager for Malignant Spinal Cord Compression Edinburgh Cancer Centre May 2010

Overview Facts and Figures Driver for Change Scotland’s MSCC Projects South East Scotland MSCC Project Jackie’s crystal ball!

Facts and Figures Incidence: Cancers: Symptoms: Diagnosis: Treatment: ?80/million/year Cancers: breast, prostate, lung, haematological, Renal, GI………. Symptoms: Pain (radicular), weakness, sensory loss, sphincter disturbance Diagnosis: MRI whole spine Treatment: Radiotherapy / Surgery Prognosis: Mobility after treatment α mobility at diagnosis 3 – 6 months (in relation to cancer stage)

Incidence in Relation to Cancer

MSCC within Spinal Column 3 1 Slide 4 This diagram, demonstrates the most common levels of the spine affected by MCC with the thoracic affected in 70% of cases followed by the lumbar spine 20% the cervical last with 10% of cases 2 Copyright J. Armstrong 2006

Malignant Spinal Cord Compression 4 1 2 3 Copyright J. Armstrong 2006

Driver for Change Clinical Research Audit Group 97/98 (CRAG audit) 1. Lack of recognition by primary and secondary care of the early symptoms 2. Lack of appropriate referral pathway once MSCC suspected 3. Lack of awareness of the most effective investigation for diagnosing MSCC Large national prospective audit that looked at 324 patients diagnosed with MCC. Three cancer centres in Scotland with Glasgow and Edinburgh providing the largest numbers. Aberdeen also involved. Looked at what had happened to these patient s in the course of their referral into the system. Also studied what happened to the patients post diagnosis. A guideline for the early diagnosis recommended

Sequence of Events GP + hospital system 9 weeks tells GP Referred 1st symptom Diagnosis Patient 3 wks GP + hospital system 9 weeks --------------3 months ---------------- Back pain what’s the sequence of events? Historically the following has taken place The median time from the patient developing their first symptom until the confirmation of a diagnosis was 90 days - 3 months The patient tells someone - usually their GP after a median of 25 days and the GP refers to someone - usually a hospital doctor after a median of 20 days The hospital doctor tries to manage the patients pain, perhaps with physio and analgesia. This type of pain is not sorted using normal alalgesia. X-ray usually is carried out of lumbar spine- This is predominantly the area that the majority of patients complain about. 70% compressions are thoracic although the pain is lumbar. X-ray is usually negative. More than 50% of the vertebral body needs to be collapsed before one can see collapse on x-ray. The next step in getting an answer is bone scanning. Not really useful. Most patients will have hot spots. If the patient has multiple hot spot levels, how does one know which level is the compressive level. You are probably looking at a picture of multiple metastases. What if it is just osteoporosis, disc disease causing marrow odoema in the vertebral body, old fracture. How can you be sure. MRI sometimes does not happen until the patient is too advanced to give good treatment outcomes and we are reduced to palliative radiotherapy or pain management using drivers and drug combinations. Neurogenic pain - 2 months Weakness 3 wks Levack et al 2001 (CRAG Audit 97/98)

http://www.nice.org.uk/

Cancer Networks in Scotland North 1.4 million, South east 1.6, West is 2.6million

Local and National Education Programmes Scottish MSCC Projects SCAN Regional Referral pathway ‘s Audit WO Scan Management Guidelines NO Scan Rapid Referral Hot line Local and National Education Programmes

SCAN MSCC Steering Group

CHANGE TIME LINE OF EVENTS TO MSCC DIAGNOSIS? tells GP referred 1st symptom diagnosis patient 3 wks GP + hospital system 9 weeks --------------3 months ---------------- back pain what’s the sequence of events? Historically the following has taken place The median time from the patient developing their first symptom until the confirmation of a diagnosis was 90 days - 3 months The patient tells someone - usually their GP after a median of 25 days and the GP refers to someone - usually a hospital doctor after a median of 20 days The hospital doctor tries to manage the patients pain, perhaps with physio and analgesia. This type of pain is not sorted using normal alalgesia. X-ray usually is carried out of lumbar spine- This is predominantly the area that the majority of patients complain about. 70% compressions are thoracic although the pain is lumbar. X-ray is usually negative. More than 50% of the vertebral body needs to be collapsed before one can see collapse on x-ray. The next step in getting an answer is bone scanning. Not really useful. Most patients will have hot spots. If the patient has multiple hot spot levels, how does one know which level is the compressive level. You are probably looking at a picture of multiple metastases. What if it is just osteoporosis, disc disease causing marrow odoema in the vertebral body, old fracture. How can you be sure. MRI sometimes does not happen until the patient is too advanced to give good treatment outcomes and we are reduced to palliative radiotherapy or pain management using drivers and drug combinations. neurogenic pain - 2 months weakness 3 wks Levack et al 2001 (CRAG Audit 97/98)

What did we set out to do? Develop and implement referral pathway’s in each of the four region’s Develop and implement sustainable education programmes Develop in collaboration with other cancer networks a minimum dataset and audit tool

1. Develop and Implement Referral Pathways in Four Regions

Referral Pathways in each region

Provisional Interim Findings July - December 2010 References: How to... Implement a rapid referral hotline Trudy McLeay; Graeme Houston; Pamela Levack; Rosie Conway. Synergy; Feb 2008 How to... benefit from a rapid referral hotline Trudy McLeay; Graeme Houston; Wendy Milne; Pamela Levack; Sean Kelly Synergy; Mar 2008 18

Site of MRI 210 only 3 patients from other areas required MRI at ECC

MRI Findings

Functional status – CRAG 97/98

Functional status – MRI

Functional Status 6 week Follow Up

2. Sustainable Education

Education- Healthcare Professionals Basic presentation delivered to healthcare professional who may see patients with suspected MSCC symptoms (identify champion) GP receives a letter with copy of pathway for any patient who has an MRI for suspected MSCC Informal opportunities as they arise – talking to GP on phone or staff on ward

CHANGE TIME LINE OF EVENTS TO MSCC DIAGNOSIS? tells GP referred 1st symptom diagnosis patient 3 wks GP + hospital system 9 weeks --------------3 months ---------------- back pain what’s the sequence of events? Historically the following has taken place The median time from the patient developing their first symptom until the confirmation of a diagnosis was 90 days - 3 months The patient tells someone - usually their GP after a median of 25 days and the GP refers to someone - usually a hospital doctor after a median of 20 days The hospital doctor tries to manage the patients pain, perhaps with physio and analgesia. This type of pain is not sorted using normal alalgesia. X-ray usually is carried out of lumbar spine- This is predominantly the area that the majority of patients complain about. 70% compressions are thoracic although the pain is lumbar. X-ray is usually negative. More than 50% of the vertebral body needs to be collapsed before one can see collapse on x-ray. The next step in getting an answer is bone scanning. Not really useful. Most patients will have hot spots. If the patient has multiple hot spot levels, how does one know which level is the compressive level. You are probably looking at a picture of multiple metastases. What if it is just osteoporosis, disc disease causing marrow odoema in the vertebral body, old fracture. How can you be sure. MRI sometimes does not happen until the patient is too advanced to give good treatment outcomes and we are reduced to palliative radiotherapy or pain management using drivers and drug combinations. neurogenic pain - 2 months weakness 3 wks Levack et al 2001 (CRAG Audit 97/98) 26

Known Metastatic Disease 26% Breast 33% Prostate n=45 n=23

Education - Patients Face to Face discussion with patients (and relative if appropriate) diagnosed with Vertebral metastases, MSCC, Impending or nerve root compression Leaflet to support the discussion

3. National Minimum Dataset Audit (SCAN, WoSCAN and NOSCAN)

National Minimum Dataset Audit Started July 2009 – July 2010 SCAN – 6 months 139 patients’ (MSCC, Impending and treated nerve roots) Analysis will answer lots of questions including: Symptom to diagnosis Functional status at various time points Steroid practices Multiprofessional referral Treatments………………………………

What else have we managed to do? Developed and implemented a successful pilot outpatient service for early MSCC symptoms Developed and implemented a protocol for consistent steroid prescribing Developed and in process of agreeing a mobility guideline Agreed 4 standards 1. Steroid 2. MRI 3. Management 4. Referral to Physio

The Future for SCAN Build on the foundation Consider further development of the service and how this will be taken forward Add to the evidence base

Jackie’s Crystal Ball Advice? Coordinator/Navigator/Specialist Improve the care for patients with MSCC Collaborate with other networks Build a strong foundation Set standards Develop the service, local policies and protocols Assess educational needs Add to evidence base! 34

FINALLY “Metastases to the spine can cause severe pain, paralysis, and impairment of activities of daily living. The treatment paradigm for spinal metastases involves a cohesive multidisciplinary approach that allows treatment plans to be made in the context of a patient's overall condition”. Meyer, Singh and Jenkins 2010

For further information/feedback contact: jackie.whigham@luht.scot.nhs.uk

References Levack, P., Graham, J., Collie, D., Grant, R., Kidd, J., Kunkler, I., Gibson, A., Hurman, D., McMillan, N., Rampling, R., Slider, L., Statham, P. and Summers, D. 2001. A prospective audit of diagnosis, management and outcome of malignant spinal cord compression. Clinical Resource and Audit Group (CRAG) 97/98. Levack, P., Garham, J., Collie, D., Grant, R., Kidd, J., Kunkler, I., Gibson, A., Hurman, D., McMillan, N., Rampling, R.., Slider, L., Statham, P. and D. Summers. 2002. Don't wait for a sensory level-listen to the symptoms: a prospective audit of the delays in diagnosis of malignant cord compression. Clinical Oncology, 14: pp.472-80. Levack, P., Graham, J. and Kidd, J. 2004. Listen to the patient: quality of life of patients with recently diagnosed malignant cord compression in relation to their disability. Palliative Medicine, 18 pp. 594-601. Loblaw, D.A., Perry, J., Chambers, A. and Laperriere. N.J. 2005. Systematic review of the Diagnosis and management of malignant extradural spinal cord compression: the Cancer Care Ontario Practice Guidelines Initiatitive’s Neuro Oncology Disease Site Group. Journal of Clinical Oncology, pp. 2028-2037.

References McLeay, T., Houston, G., Levack, P., Conway, R. 2008. How to... Implement a rapid referral hotline Synergy; Feb 2008 McLeay, T., Houston, G., Milne, W., Levack, P. and Kelly, S. 2008 How to... benefit from a rapid referral hotline. Synergy; Mar 2008 McClinton, A. and Hutchison, C.2006. Malignant spinal cord compression, a retrospective audit of clinical practice at the Beatson Oncology Centre. British Journal of Cancer, 94 pp. 486-91. Meyer, Scott A. Singh, Harshpal. Jenkins, Arthur L.2010. Surgical treatment of metastatic spinal tumours. Mount Sinai Journal of Medicine. 77(1),124-9. NICE consultation document http://www.nice.org.uk/guidance/index.jsp?action=folder&o=40703 WO SCAN Guidelines for MSCC http://www.palliativecareglasgow.info/pdf/MSCC%20Guidelines.doc Warnock, C., Cafferty, C., Hodson, S., Kirkam, E., Osguthorpe, C., Siddal, J., Walsh, R. and Foran.B. Evaluating the care of patients with malignant spinal cord compression at a regional cancer centre. 2008. International Journal of Palliative Nursing, 14 (10) pp. 510 515.