Summary
Cancer is a major cause of morbidity and mortality in Scotland. The Scottish Executive has responded to the challenge of cancer through its national strategy, Living and Dying Well and Building on Progress.
In Scotland three regional cancer networks co-ordinate and develop services for people with cancer across the country. The East of Scotland Cancer Network (SCAN) serves a population of approximately 1.4 million across four NHS Board areas.
Malignant spinal cord compression (MSCC) can affect any patient with cancer. It occurs in approximately 5 per cent to 10 per cent of cancer patients and is a major cause of morbidity. Early diagnosis when a patient is still ambulant is crucial and rapid referral and treatment lead to better outcomes. In addition, improvements in rehabilitation and aftercare improve patient experience and quality of life.
Patients with MSCC will often see a number of different healthcare professionals throughout their journey across SCAN, including their own home, local hospital, regional cancer centre and hospice. It is paramount that care is consistent, integrated and optimal throughout this time.
The first step to achieving this in the South East of Scotland has been the development of the regionally agreed guidelines developed during the MSCC project with funding from Macmillan Cancer Support, using research evidence, expert opinion and professional consensus. Other aspects of the project focused on changing practice within hospital to reduce delays and improve patient and staff education. The SCAN Audit conducted as part of the project has demonstrated real improvements in many of these areas.
Objectives
Patients with MSCC will often see a number of different health care professionals throughout their journey across the South East of Scotland including their own home, local hospital, regional cancer centre and hospice. Early diagnosis whilst a patient is still ambulant is crucial 6. It is paramount that care is consistent, integrated and optimal throughout this time. Rapid referral and treatment lead to better outcomes 7.
The project strategy aimed to diagnose MSCC earlier, hypothesising that earlier diagnosis would ensure patients are placed on the correct treatment pathway sooner, therefore enhancing quality of life and redirecting service costs. The strategy included:
- Effective referral guidelines and management guidance.
- MSCC education for healthcare professionals.
- A minimum data set and development of quality standards.
Solution
The following actions were used to achieve the projects objectives:
1. Effective referral guidelines and management guidance
The project used a collaborative multidisciplinary approach to ensure consistency and quality of care across SCAN. An expert steering group was convened to provide advice and develop the project aims utilising research evidence, expert opinion and professional consensus 8, 9.
Each NHS trust board with SCAN identified a key professional who worked collaboratively with the project lead and the local development group, to develop local pathways which would promote prompt response for patients with suspected MSCC. The local development groups included representation from Radiology, Palliative Care, Primary Care, Acute Care and Nursing.
Once local pathways were developed they were sent out for local consultation to a wide range of stakeholders. Once comments were received these were reviewed and changes were incorporated into the final pathways. The pathways were launched and supported in a variety of ways including local educational events, email, newsletters and face to face discussions with key healthcare professionals.
2. MSCC education
2.1 Healthcare professionals
Following educational programmes in each region by the project team sustainable education was considered key to the SCAN MSCC project therefore, key champions were identified in each region to ensure MSCC education was included in future local cancer education.
Macmillan Cancer Support funded a collaborative educational project between the Scottish cancer networks; West of Scotland (WoSCAN) and the North of Scotland (NOSCAN). Together they developed an MSCC toolkit which covers pathophysiology, signs and symptoms, investigation, radiotherapy and rehabilitation in patients with MSCC 10.
2.2 Patient education
The educational programme encouraged healthcare staff to include patient education where appropriate especially to high risk groups of patients; patients with bone metastases or with lung, breast and prostate cancer. The SCAN MSCC project developed an information leaflet "Bone Problems & Back Pain in People with Cancer" to support patient education 11.
3. A minimum data set and development of quality standards.
Collaboration with the other Scottish cancer networks (WoSCAN and NOSCAN) led to the development of an agreed dataset for use in MSCC audit. The dataset focused on route of referral, presenting symptoms, investigation, management and follow up of patients diagnosed with MSCC.
Results
1. Effective referral guidelines and management guidance
Each trust within SCAN has locally agreed referral pathways for patients with suspected MSCC. NHS Lothian’s pathway, appendix 1. The pathways promote local investigation with transfer if positive to the Edinburgh Cancer Centre (ECC) which is the main treatment centre.
1.1 Additional achievements
Using the collaborative model additional guidance was developed to promote consistent in-patient management; corticosteroid policy, oncological emergency guideline and mobilisation guideline.
During the project NICE published Guideline CG75 “Metastatic spinal cord compression: diagnosis and management of adults at risk of and with metastatic spinal cord compression” which recommend “Each centre treating patients with MSCC should have a single point of contact to access the MSCC coordinator who should provide advice to clinicians and coordinate the care pathway at all times”.
A baseline audit for the SCAN MSCC project identified that a number of patients referred with suspected MSCC had early symptoms and were mobile. This led to the development of an outpatient investigation service for patients’ identified with early symptoms of MSCC who were mobile. Monday to Friday an MRI slot was made available for this cohort of patients. The project lead was identified as the MSCC coordinator for the pilot. In addition to coordinating patient care there was also opportunity to provide patient support and referral to other supportive services if appropriate.
The pilot out-patient service ran over 6 months and investigated 32 patients with only 7 requiring admission for MSCC. The majority had a management plan agreed within 4 hours.
A basic model was used to calculate the raw saving 12. If a basic hospital bed costs £250 per day and a patient with suspected MSCC uses one for two days the cost would be £500. Using the basic model the saving would have been £16,000.
2. MSCC education
2.1 Healthcare professionals
An educational resource was developed to support the identified educational champions in each region with future MSCC education; core MSCC presentation, MSCC toolkit DVD and MSCC quiz.
In SCAN the MSCC toolkit DVD has been sent to a wide range of professionals responsible for healthcare education and is used to support MSCC education. For example Edinburgh Napier University use the DVD to support their undergraduate and postgraduate palliative care module. It is also available from Macmillan Cancer Support 10.
2.2 Patient education
The patient information leaflet "Bone Problems & Back Pain in People with Cancer" is widely available in out-patient departments throughout SCAN 11 and electronically on the internet.
3. A minimum data set and development of quality standards.
The agreed dataset was used to audit route of referral, presenting symptoms, investigation, management and follow up of patients diagnosed with MSCC following implementation of the projects initiatives.
Evaluation
1. Effective referral guidelines and management guidance
Following implementation of the initiatives, a one year prospective audit 11 was carried out and provides evidence that there have been improvements when compared with the CRAG Audit 4.
The majority of patients in the South East of Scotland are investigated, by means of gold standard MRI, within one day of referral to a specialist and go on to have prompt primary treatment. The percentage of patients immobile at time of diagnosis has decreased from 48% (CRAG) to 33% (SCAN).
The audit highlighted that where surgery was appropriate, usually only in a small number of cases, the time from diagnosis to surgery could be improved. Other areas for improvement include continued patient and staff education, and consistent in-patient management.
As a result of the audit findings the project steering group have developed seven quality standards recommended for measuring future MSCC patient care. It is suggested that SCAN commission an MSCC audit every three years.
The full audit report is available on the SCAN website.
2. MSCC education
2.1 Healthcare education
The MSCC quiz (appendix 2) is a resource which is helpful when assessing learning objectives and outcomes. Although outcomes from using this tool to support education have not yet been published anecdotally feedback from educationalist has been positive with regard to addressing identified educational gaps.
2.2 Patient education
The SCAN Audit reported that patient education remains an area where improvements could be made. A large proportion of patients (51%) were found to have had symptoms for 4 weeks or more prior to seeking medical advice.
As previously described staff are encouraged to use the patient information leaflet "Bone Problems & Back Pain in People with Cancer" to support patient education. It is anticipated changing practice within hospitals, improved patient education and information will reduce the length of time patients have symptoms prior to seeking healthcare advice.
3. Minimum data set
The SCAN Audit used the agreed Scottish dataset. However it was acknowledged that to replicate this amount of data collection would be challenging in the future. A shortened dataset has been recommended for future audits.
Innovation
It is 10 years since the findings from the CRAG Audit of MSCC were published. The CRAG report recommended each cancer network developed strategies aimed at improving outcomes for patients with MSCC through earlier diagnosis.
NICE recommend that every cancer network ensures that appropriate services are commissioned and in place for the efficient and effective diagnosis, treatment, rehabilitation and ongoing care of patients with MSCC. In addition they recommended that these services should be monitored regularly through prospective audit of the care pathway.
The SCAN MSCC project, with funding from Macmillan Cancer Support, responded to the CRAG Audit’s recommendations: developed educational and process strategies aimed at raising awareness of the early symptoms, promoting early diagnosis and treatment and improving overall patient care.
Findings from SCAN MSCC Audit 11 provides evidence supporting that there have been improvements in patient care within SCAN: presentation of patients when their ambulatory status is better, prompt appropriate imaging, steroid prescribing and primary treatment. The audit has also highlighted areas for improvement: continued patient and staff education, consistent in-patient management and time from referral to surgery.
The MSCC project has offered a structure within SCAN to promote earlier MSCC diagnosis, as well as guidance aimed at providing consistent clinical management. Regional leads will work collaboratively to ensure the projects achievements are sustained and built upon.
Impact
The South East of Scotland Cancer Network
Treatment (radiotherapy and or surgery) is provided in one acute setting (NHS Lothian) however each region within the cancer network have MRI services for investigation. Following the development of the locally agreed referral pathways investigations are now carried locally ensuring resources are appropriately used. Figure 4 provides an example of the numbers of suspected MSCC patients within SCAN over a 12 month period. The majority of these patients would have prior to the initiatives been investigated in NHS Lothian (n193).
Patients
Previously those outwith NHS Lothian would travel some 2 hours for investigation at the ECC. The pathway now ensures they and their family only need to travel to Edinburgh if the investigation is postive and they require treatment. This has led to a reduced length of stay and improved patient experience.
The initiatives developed from this project mean that patients with suspected MSCC are investigated locally and are only transferred to the ECC if positive which in turn means better experience for patients, better use of resources and an overall more efficient service. Early diagnosis whilst a patient is still ambulant is crucial. As a result to the regional referral pathways and educational programme patients now have a greater chance of remaining mobile through earlier recognition and investigation.
Following the audit report the project group have developed six recommended standards for MSCC patient management.
Throughout the South East of Scotland there are locally agreed regional referral pathways.
Lessons learnt from the project have been shared with a variety of healthcare professionals both locally, nationally and internationally.
Following publication of the NICE guidance 9 other cancer networks in the United Kingdom approached the Edinburgh Cancer Centre to explore lessons learnt from the SCAN MSCC project. The project lead shared this information in a variety of settings including presentation at a conference in Ireland 13. In addition the MPM has provided advice to the North East of Ireland and East of London cancer networks on how to develop the role of an MSCC coordinator.
The project lead also represented NHS Lothian as part of the Nurse Exchange Programme 2010 and explored MSCC management in Atlanta, Georgia. It provided an opportunity to share lessons learnt from the MSCC project’s experiences and to explore MSCC management in another healthcare setting.
