Improving care of patients with metastatic spinal cord compression Clare Warnock, Suzanne Hodson, Angela Tod, Rebecca Mills, Lesley Crowther, Jean Buchanan and Bernadette Foran
Key words: Mobility ■ Palliative care ■ Patient pathway ■ Thrombo-embolic risk ■ Practice development
M
etastatic spinal cord compression (MSCC) is a symptom of advanced cancer. It is defined as compression of the spinal cord or cord equina by metastatic or direct spread to the vertebrae that threatens or causes neurological disability (Farrell, 2013). Estimates suggest that MSCC may occur in up to 5% of all patients with cancer (Loblaw et al, 2005). However, because MSCC is a feature of advanced cancer the incidence is likely to increase alongside improved cancer survival rates (Hutchinson and Armstrong, 2010). MSCC patients have a wide range of complex physical, psychological and social care needs. They often face the challenge of coping with sudden and unexpected significant disability, or the knowledge that this could develop, alongside a diagnosis of advanced cancer (Eva and Lord, 2003). This article describes a project that aimed to improve the care provided to patients newly diagnosed with advanced Clare Warnock is Practice Development Sister, Suzanne Hodson is Senior Physiotherapist, Weston Park Hospital, Specialist Cancer Services, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield; Angela Tod is Professor of Health Services Research, Centre for Health and Social Care Research, Sheffield Hallam University, Sheffield; Rebecca Mills is Senior Oncology Pharmacist, Lesley Crowther is Occupational Therapist, Jean Buchanan is Transfer of Care Nurse, Bernadette Foran is Clinical Oncology Consultant: all at Weston Park Hospital, Specialist Cancer Services, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield Accepted for publication: December 2013
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Background The signs and symptoms of MSCC are detailed in Box 1. If the presenting symptoms are not detected or treated early they can progress into advanced symptoms of MSCC including loss of mobility, paralysis and bowel and bladder dysfunction (Kaplan, 2009). Late detection is common and it is estimated that about half of the patients diagnosed with MSCC are unable to walk at presentation (James and Brooks, 2010). The key prognostic indicator for functional outcome in MSCC is the level of mobility at presentation, and those who present unable to walk are unlikely to regain mobility following treatment (Drudges-Coates and Rajbabu, 2008). Prognosis following the development of MSCC is poor and is estimated to average between 3 and 6 months (McLinton and Hutchinson, 2006). The treatment of MSCC is usually palliative in intent and aims to reduce pain and, where possible, restore or preserve physical and neurological function (Whigham, 2009). Treatment options include radiotherapy and surgery. The aim of surgery is to achieve spinal stability and preserve neurological function. Radiotherapy can improve neurological function and assist in pain control (DrudgesCoates and Rajbabu, 2008). Decisions about treatment modality are based on a number of factors such as the extent and number of levels of cord compression and its impact on neurological and sensory function. Other considerations include the patient’s general health, fitness for anaesthesia, tumour histological type, stage and prognosis (National Institute for Health and Care Excellence (NICE), 2008). MSCC is associated with a poor prognosis and the focus of care for those with advanced disease is on symptom control and returning home if possible. This makes the context of MSCC very different from that of spinal cord injury where patients have access to more intensive rehabilitation and time to adapt to their disability (Eva et al, 2009).
The MSCC project plan In 2006 an MSCC project group was established in a regional cancer centre in the north of England. Group members represented the range of disciplines involved in MSCC care (Box 2). The first stage of the project was to map the MSCC care pathway from admission to discharge and identify areas for care improvement. Concerns were identified in relation to six core themes: mobility, medications, bowel management,
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Abstract
Metastatic spinal cord compression is a feature of advanced cancer and the incidence is likely to increase alongside improved survival rates. Patients with spinal cord compression have complex physical, psychological and social care needs. This article describes a multidisciplinary project aimed at improving the care provided to newly diagnosed patients who were admitted to a regional cancer centre for radiotherapy. The project used a range of approaches to measure care, develop and implement interventions, and evaluate outcomes. Aspects of care reviewed in the project included mobilisation, medications including steroids and thrombo-prophylaxis, bowel management, patient priorities and concerns, discharge planning and early detection.
MSCC, who were admitted to a regional cancer centre for radiotherapy treatment.
British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 4
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care review psychological care, patient information to support early detection and discharge planning. The steps of the project plan described in Figure 1 were then followed for each theme. Project content and development were influenced by the timely publication of the NICE (2008) guidance on MSCC. This article aims to raise awareness of MSCC using the project to illustrate key aspects of care. Detailed descriptions of the service review and patient experience research carried out as part of the project are published elsewhere (Warnock et al, 2008; Warnock and Tod, 2013). These provide information on the methodology used including the data collection tools, approaches to data analysis and participants, which are not described here.
The context of care for MSCC patients To date, the project has included two audits of the care records of MSCC patients admitted to the cancer centre for radiotherapy treatment. The first was carried out at the beginning of the project in 2007 and reviewed the records of 50 patients; this was repeated 3 years later in 2010, with 30 patients. Demographic and descriptive data collected during both audits provide useful insights into the context of care for MSCC. The age, diagnosis and gender of the 80 patients whose care was reviewed are detailed in Table 1. Of the participants, 80% were aged over 60 years, and the most common primary diagnosis was prostate cancer, closely followed by lung and breast cancer. This reflects the incidence in the wider cancer population, where these are the three most common primary sites associated with MSCC. However, it is important to note that MSCC can occur in any cancer, including unknown primary (Whigham, 2009). Late presentation was common, 38 patients (47%) were unable to walk on admission and 23 patients (29%) required assistance to mobilise. For the majority of patients functional ability did not improve during their admission and 43 patients (54%) were unable to walk on being discharged.
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Project themes Mobilisation Concerns about clinical practice in relation to mobility were identified by the group at the outset of the project. The traditional practice if MSCC was suspected was to nurse patients on strict flat bed rest until completion of radiotherapy. However, this approach was being questioned in the literature and assessment of spinal stability was being suggested as the basis for decision-making around mobility in MSCC (Purdue, 2004). This development was partly influenced by the potential complications associated with bed rest including chest infection, deep vein thrombosis, pressure sores, social isolation and delayed discharge. The project reviewed local mobility practice through two approaches: the audit of care records and a questionnaire distributed to medical and nursing staff in the cancer centre (Warnock et al, 2008). The findings revealed the following contradictions: ■■ 24 (75%) of the doctor respondents said they did not recommend routine bed rest ■■ 22 (69%) of the nurse respondents said patients were
British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 4
Box 1. Signs and symptoms of metastatic spinal cord compression Early signs of spinal cord compression requiring urgent referral (within 24 hours) ■ Pain
in the middle (thoracic) or upper (cervical) spine lower (lumbar) spinal pain ■ Severe unremitting lower spinal pain ■ Significant change in the nature of long-standing pain ■ Spinal pain aggravated by straining (e.g. at stool, or when coughing or sneezing) ■ Localised spinal tenderness ■ Nocturnal spinal pain preventing sleep ■ Progressive
Advanced signs of MSCC requiring immediate referral as an oncology emergency ■ Neurological
symptoms including radicular pain, any limb weakness, difficulty in walking, sensory loss ■ Loss of coordination, paresthesia ■ Bladder or bowel dysfunction ■ Neurological signs of spinal cord or cauda equina compression (National Institute for Health and Care Excellence, 2008; Whigham, 2009)
routinely nursed on flat bed rest until they completed radiotherapy ■■ 44 patients (88%) were found to have been nursed on flat bed rest, with only 8 (16%) having a clinical reason for bed rest documented in their notes. These discrepancies provided good evidence of the need for locally agreed guidance, which was developed in 2007. The guidelines were based on assessment of spinal stability, an approach that was supported by NICE in 2008 (Box 3). By the 2010 audit there had been a marked improvement in practice as it found that only 2 patients (7%) were incorrectly nursed on flat bed rest. It is important to note that mobility guidelines do not remove the need for individual care plans. These will be influenced by factors including the aim and likely outcomes of treatment, prognosis, pain and symptom management, general health and fitness and patient preference. A recent review of the literature concluded that more research is required into mobility practice surrounding MSCC particularly in relation to assessment of spinal stability, timing of mobilisation, use of bracing and patient positioning (Kilbride et al, 2010). The authors of the review concluded that until this evidence exists it is essential that decisions about mobility are based on individual patient assessment. Box 2. Multidisciplinary team members represented in the MSCC group ■ Ward-based
nurses
■ Physiotherapist ■ Clinical
oncology consultant development nurse ■ Social worker ■ Community liaison nurse ■ Oncology pharmacist ■ Occupational therapist ■ Palliative care nurse specialist ■ Dietician ■ Clinical nurse educator ■ Therapy radiographer ■ Practice
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Identify project themes ■■ Radiotherapy treatment pathway ■■ Mobility pre and post treatment ■■ Steroids and thrombo-prophylaxis ■■ Bowel and bladder management ■■ Rehabilitation and discharge planning ■■ Patients’ priorities and concerns ■■ Supporting early detection
Evaluate the current care given to patients with MSCC in relation to themes Evaluation methods ■■ Audit/service review of practice ■ Review of patient records including: drug charts, nursing and medical documentation, radiotherapy treatment plans ■■ Staff knowledge and attitudes questionnaire ■ Completed by nursing and medical staff in the cancer centre ■■ Research into patient experiences of diagnosis and pre-discharge care ■■ Ongoing clinical experiences of project group members ■ Concerns identified by team members during own clinical practice e.g. in MDT meetings, ward rounds, while caring for MSCC patients
Develop and implement interventions to address issues identified Interventions ■■ Written patient information to support early detection ■■ Mobility guidelines ■■ Bowel management guidelines ■■ Steroid prescribing schedule ■■ Local ‘in-house’ education initiatives ■■ Network-wide education programmes
Review impact and effectiveness of interventions
Refine and/or develop interventions to address issues identified in review
Figure 1. Project outline
High-dose steroids are an important component in the management of MSCC. They are given to reduce spinal oedema with the aim of preventing further deterioration in neurological function and improving pain control (Whigham, 2009). NICE guidance recommends a starting dose of 16 mg of dexamethasone daily (unless contraindicated). This can often be reduced once radiotherapy has commenced so that patients receive steroids for a short period only, to prevent the consequences of adrenal suppression (NICE, 2008). However, doses should be reviewed if the patient’s neurological function deteriorates. Steroid prescribing was included in our audit of care records. In audit one we found a high compliance (92%, 46 prescriptions) with a starting dose of 16 mg of dexamethasone, but wide variation in practice for dose reductions. This
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led to many patients being on steroids longer than the period recommended. As a consequence a steroid-reduction protocol was agreed (Table 2). The second review achieved 100% compliance with the starting dose but variations in the timing of dose reductions remained. Further interventions have been developed to increase compliance including staff education and prominently displayed posters. A further review is required to evaluate their impact.
Thrombo-embolic prophylaxis Patients with cancer are at increased risk of thrombo-embolic disease including deep vein thrombosis and pulmonary embolus (NICE, 2010). The reduced mobility that often accompanies MSCC increases this potential. At the time of the first review the cancer centre did not have agreed guidelines on the use of thrombo-embolic prophylaxis and the use among MSCC patients was very limited (Warnock
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Medications Steroids
British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 4
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care review Table 1. Demographic and background data on 80 MSCC patients whose care was reviewed as part of the MSCC project Diagnosis Prostate Breast Lung Unknown primary Other
33 13 9 7 13
Gender Male Female
59 21
Age Range 42 to 91 years Mean age of 68 80% of patients were aged over 60 Symptoms at presentation Ability to mobilise Unable to walk Assistance to walk Independent mobility
38 (47%) 23 (29%) 19 (24%)
Urinary symptoms Catheterised Incontinent No problems
37 (46%) 12 (15%) 31 (39%)
Bowel function* Constipation Incontinent No problems
40 (51%) 12 (15%) 26 (33%)
*missing data = 2
et al, 2008). Following the introduction of local and national guidance (NICE, 2010) compliance with prescribing guidelines increased to 83% by 2010. Thrombo-embolic prophylaxis risk assessment completion and prescribing are monitored regularly and this has continued to improve.
Bowel management
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Bowel problems experienced by patients with MSCC vary depending on the location and extent of compression (Warnock et al, 2008). Bowel management should be based on individual patient assessment, but our first review of care identified that only 13 patients (26%) had documented evidence of a bowel management regimen in their records. Bowel management guidelines were written and an MSCC nursing care pathway record was developed to aid documentation. In the second audit 32 patients (63%) had evidence of a bowel management regimen documented. While being an improvement, this highlighted the need for further work in this area. The management of faecal incontinence has also been identified as an area for practice improvement, and this is being developed in consultation with local continence advice services.
Patient priorities and concerns Throughout the project literature, reviews were carried out on each of the project themes. This process revealed that little was known about patient experiences of MSCC. In
British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 4
Box 3. Guidelines for mobility in MSCC Patients with MCSS require an individualised plan of care for mobility ■ Nurse
on flat bed rest until magnetic resonance imaging (MRI) carried out and reviewed ■ If there are no signs of neurological or bone instability on assessment sit the patient gradually from supine to 60 degrees in stages over a period of 4 hours ■ Monitor closely for signs of instability including increased pain or neurological symptoms ■ If these occur return the patient to a position where these symptoms cease ■ If a sitting position is achieved the patient can then move on to sitting unsupported, transfers and mobilisation under physiotherapy assessment as symptoms allow ■ If patients have signs of spinal instability and are unsuitable for surgery then bracing may be required. Adapted from National Institute for Health and Care Excellence (2008)
the light of this finding, we developed a descriptive research project, using semi-structured interviews, to explore the experiences of 10 MSCC patients (Warnock and Tod, 2013). All necessary NHS research ethics and governance approvals were obtained. The findings revealed that the main sources of patient concerns were their reduced mobility, loss of independence and the effect this might have on their family. Getting home emerged as a high priority. However they were also anxious about managing at home and the changes to their social life, work and leisure activities. While they talked about their concerns, the participants also emphasised the importance of being positive about their ability to cope. They were keen to develop their functional ability and learn skills that could increase their independence, and described how nurses and allied health professionals could help by providing education, emotional and practical support, and opportunities to practice new ways of coping. Our study found that patients’ priorities for their care were to improve their functional ability, be as independent as possible and get home to be with their family. To achieve this requires effective rehabilitation and discharge planning services (NICE, 2008), and a number of measures were implemented to improve local care. These include early referral pathways to rehabilitation services; discussion of all MSCC patients at the weekly ward multidisciplinary Table 2. Steroid-reducing protocol Day
Dexamethasone daily dose
Administration
1–3
16 mg
16 mg every morning or 8 mg twice daily (8 am, 12 noon)
4–6
8 mg
8 mg every morning
7–9
4 mg
4 mg every morning
10–12
2 mg
2 mg every morning
13
Discontinue
■■ While
the patient is on steroids commence a proton-pump inhibitor for gastric protection ■■ A slower reducing regimen may be required for patients who have received previous courses of steroids ■■ Patients with HRPC (castrate-resistant prostate cancer) should stay on a maintenance dose of dexamethasone (usually 1–2 mg) unless own team decides otherwise.
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Early detection Late detection is a common occurrence in patients with MSCC and many present with advanced symptoms. James and Brooks (2010) attribute this to a failure by three groups to recognise symptoms and take immediate action; the three groups are: patients and carers, primary care services and hospital staff, particularly those in non-oncology settings. Improving detection requires interventions that target each of these three groups. Patient information plays a key role in early detection (Hutchinson et al, 2012) and a local patient information leaflet called ‘Be Bone Aware’ was developed to promote this. The leaflet informs patients about the symptoms of MSCC, and provides information on who to contact if they occur. It is designed to be given to all patients who develop bone metastases and urges them to show it to any health professionals they consult about their symptoms. In recent national guidelines, early detection of MSCC has been identified as a priority (National Cancer Action Team (NCAT), 2011) and it is vital that all health professionals recognise symptoms and refer patients for appropriate care. Protocols and pathways to enable recognition and early referral have been developed for use across the region. An audit of the pathway from detection to referral and treatment is being carried out in accordance with national acute oncology measures (NCAT, 2011).
Conclusion Our project aimed to improve the care of patients with MSCC. The complexity of their care needs was reflected in the project design, which used multiple and different approaches to evaluation and developed a diverse range
Key points n Patients with advanced metastatic spinal cord compression (MSCC) have a wide range of complex physical, psychological and social care needs that require the skills and expertise represented in the multidisciplinary team n This project aimed to improve the care provided to patients newly diagnosed with advanced MSCC and admitted to a regional cancer centre for radiotherapy n Key aspects of the care pathway include patients’ priorities and concerns, mobilisation, steroid prescribing, thrombo-prophylaxis, bowel management, and discharge planning n Patients’ priorities for their care were to improve functional ability, be as independent as possible and get home to be with their families
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of outcomes and interventions to improve care. By using systematic approaches to reviewing care we identified areas for improvement and highlighted the need to standardise care according to best practice. For example, the audit of care records and staff questionnaires identified discrepancies between presumed practice and actual care. This was used to help clinicians recognise the need to agree on protocols and guidelines for MSCC. To date, the project has focused on the needs of patients with advanced MSCC in recognition of the complex physical, psychological and social challenges they face. The consequences of late detection highlight the importance of early diagnosis of MSCC. Reducing the number of patients who are diagnosed with advanced MSCC plays a vital role in improving the quality of life and outcomes for this group BJN of patients. Acknowledgements: The contribution of all the members of the MSCC project group to this work is acknowledged including that of Charles Osguthorpe, Sue Banks and Rebecca Walsh. Conflict of interest: None Funding statement:The patient experience research was supported by the small grants scheme from the Weston Park Hospital cancer appeal Drudge-Coates L, Rajbabu K (2008) Diagnosis and management of malignant spinal cord compression part 2. Int J Palliat Nurs 14(4): 175-80 Eva G, Lord S (2003) Rehabilitation in malignant spinal cord compression. European Journal of Palliative Care 10(4): 148–50 Eva G, Paley J, Miller M, Wee B (2009) Patients’ constructions of disability in metastatic spinal cord compression. Palliat Med 23(2): 132–40 Farrell C (2013) Bone metastases: assessment, management and treatment options. Br J Nurs 22(10 Suppl): S4–11 Hutchinson C, Armstrong M (2010) Development and implementation of regional guidelines for malignant spinal cord compression. Int J Palliat Nurs 16(7): 320-6 Hutchison C, Morrison A, Rice AM, Tait G, Harden S (2012) Provision of information about malignant spinal cord compression: perceptions of patients and staff. Int J Palliat Nurs 18(2): 61-8 James N, Brooks D (2010) Managing patients with metastatic spinal cord compression. Cancer Nursing Practice 9(6): 19-22 Kaplan M (2009) Back pain: is it spinal cord compression? Clin J Onc Nurs 13(5): 592–5 Kilbride L, Cox M, Kennedy CM, Lee SH, Grant R (2010) Metastatic spinal cord compression: a review of practice and care. J Clin Nurs 19: 1767–83 Loblaw DA, Perry J, Chambers A, Laperriere NJ for the Cancer Care Ontario Practice Guidelines Initiative’s Neuro-Oncology Disease Site Group (2005) Systematic review of the diagnosis and management of malignant extradural spinal cord compression. J Clin Oncol 23(9): 2028–37 McLinton A, Hutchinson C (2006) Malignant spinal cord compression: a retrospective audit of clinical practice at a UK regional cancer centre. Br J Cancer 94(4): 486–91 National Cancer Action Team (2011) Manual for Cancer Services: Acute Oncology - Including Metatastic Spinal Cord Compression Measures. Department of Health, London National Institute for Health and Care Excellence (2008) Metastatic Spinal Cord Compression: Diagnosis and Management of Patient at Risk of and with Metastatic Spinal Cord Compression [CG75]. NICE, London National Institute for Health and Care Excellence (2010) Reducing the Risk of Venous Thromboembolism (Deep Vein Thrombosis and Pulmonary Embolism) in Patients Admitted to Hospital [CG92]. NICE, London, Purdue C(2004) Diagnosis and treatment of malignant spinal cord compression. Nurs Times 100(38): 38-41 Warnock C, Cafferty C, Hodson S et al (2008) Evaluating the care of patients with malignant spinal cord compression at a regional cancer centre. Int J Palliat Nurs 14(10): 510-5 Warnock C, Tod A (2013) A descriptive exploration of the experiences of patients with significant functional impairment following a recent diagnosis of metastatic spinal cord compression. J Adv Nurs Jul 19. doi: 10.1111/ jan.12215 Whigham J (2009) Malignant spinal cord compression in a patient with advanced progressive disease. Br J Neurosci Nurs 5(2): 73-8
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team (MDT) meetings; and educational initiatives open to multiprofessional care providers across hospital, community and nursing home settings. Meeting patient priorities for care presents significant challenges to the MDT, the patient and his/her family. Discussions around home care and adaptations mean that the full implications of MSCC have to be addressed very soon after diagnosis. Resource restrictions can also threaten the standard of care that patients receive. In the next phase of the project we plan to evaluate these factors by exploring patient experiences after being discharged from the cancer centre.
British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 4
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Key words: Mobility ■ Palliative care ■ Patient pathway ■ Thrombo-embolic risk ■ Practice development
M
etastatic spinal cord compression (MSCC) is a symptom of advanced cancer. It is defined as compression of the spinal cord or cord equina by metastatic or direct spread to the vertebrae that threatens or causes neurological disability (Farrell, 2013). Estimates suggest that MSCC may occur in up to 5% of all patients with cancer (Loblaw et al, 2005). However, because MSCC is a feature of advanced cancer the incidence is likely to increase alongside improved cancer survival rates (Hutchinson and Armstrong, 2010). MSCC patients have a wide range of complex physical, psychological and social care needs. They often face the challenge of coping with sudden and unexpected significant disability, or the knowledge that this could develop, alongside a diagnosis of advanced cancer (Eva and Lord, 2003). This article describes a project that aimed to improve the care provided to patients newly diagnosed with advanced Clare Warnock is Practice Development Sister, Suzanne Hodson is Senior Physiotherapist, Weston Park Hospital, Specialist Cancer Services, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield; Angela Tod is Professor of Health Services Research, Centre for Health and Social Care Research, Sheffield Hallam University, Sheffield; Rebecca Mills is Senior Oncology Pharmacist, Lesley Crowther is Occupational Therapist, Jean Buchanan is Transfer of Care Nurse, Bernadette Foran is Clinical Oncology Consultant: all at Weston Park Hospital, Specialist Cancer Services, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield Accepted for publication: December 2013
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Background The signs and symptoms of MSCC are detailed in Box 1. If the presenting symptoms are not detected or treated early they can progress into advanced symptoms of MSCC including loss of mobility, paralysis and bowel and bladder dysfunction (Kaplan, 2009). Late detection is common and it is estimated that about half of the patients diagnosed with MSCC are unable to walk at presentation (James and Brooks, 2010). The key prognostic indicator for functional outcome in MSCC is the level of mobility at presentation, and those who present unable to walk are unlikely to regain mobility following treatment (Drudges-Coates and Rajbabu, 2008). Prognosis following the development of MSCC is poor and is estimated to average between 3 and 6 months (McLinton and Hutchinson, 2006). The treatment of MSCC is usually palliative in intent and aims to reduce pain and, where possible, restore or preserve physical and neurological function (Whigham, 2009). Treatment options include radiotherapy and surgery. The aim of surgery is to achieve spinal stability and preserve neurological function. Radiotherapy can improve neurological function and assist in pain control (DrudgesCoates and Rajbabu, 2008). Decisions about treatment modality are based on a number of factors such as the extent and number of levels of cord compression and its impact on neurological and sensory function. Other considerations include the patient’s general health, fitness for anaesthesia, tumour histological type, stage and prognosis (National Institute for Health and Care Excellence (NICE), 2008). MSCC is associated with a poor prognosis and the focus of care for those with advanced disease is on symptom control and returning home if possible. This makes the context of MSCC very different from that of spinal cord injury where patients have access to more intensive rehabilitation and time to adapt to their disability (Eva et al, 2009).
The MSCC project plan In 2006 an MSCC project group was established in a regional cancer centre in the north of England. Group members represented the range of disciplines involved in MSCC care (Box 2). The first stage of the project was to map the MSCC care pathway from admission to discharge and identify areas for care improvement. Concerns were identified in relation to six core themes: mobility, medications, bowel management,
© 2014 MA Healthcare Ltd
Abstract
Metastatic spinal cord compression is a feature of advanced cancer and the incidence is likely to increase alongside improved survival rates. Patients with spinal cord compression have complex physical, psychological and social care needs. This article describes a multidisciplinary project aimed at improving the care provided to newly diagnosed patients who were admitted to a regional cancer centre for radiotherapy. The project used a range of approaches to measure care, develop and implement interventions, and evaluate outcomes. Aspects of care reviewed in the project included mobilisation, medications including steroids and thrombo-prophylaxis, bowel management, patient priorities and concerns, discharge planning and early detection.
MSCC, who were admitted to a regional cancer centre for radiotherapy treatment.
British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 4
British Journal of Nursing.Downloaded from magonlinelibrary.com by 130.113.086.233 on November 18, 2014. For personal use only. No other uses without permission. . All rights reserved.
care review psychological care, patient information to support early detection and discharge planning. The steps of the project plan described in Figure 1 were then followed for each theme. Project content and development were influenced by the timely publication of the NICE (2008) guidance on MSCC. This article aims to raise awareness of MSCC using the project to illustrate key aspects of care. Detailed descriptions of the service review and patient experience research carried out as part of the project are published elsewhere (Warnock et al, 2008; Warnock and Tod, 2013). These provide information on the methodology used including the data collection tools, approaches to data analysis and participants, which are not described here.
The context of care for MSCC patients To date, the project has included two audits of the care records of MSCC patients admitted to the cancer centre for radiotherapy treatment. The first was carried out at the beginning of the project in 2007 and reviewed the records of 50 patients; this was repeated 3 years later in 2010, with 30 patients. Demographic and descriptive data collected during both audits provide useful insights into the context of care for MSCC. The age, diagnosis and gender of the 80 patients whose care was reviewed are detailed in Table 1. Of the participants, 80% were aged over 60 years, and the most common primary diagnosis was prostate cancer, closely followed by lung and breast cancer. This reflects the incidence in the wider cancer population, where these are the three most common primary sites associated with MSCC. However, it is important to note that MSCC can occur in any cancer, including unknown primary (Whigham, 2009). Late presentation was common, 38 patients (47%) were unable to walk on admission and 23 patients (29%) required assistance to mobilise. For the majority of patients functional ability did not improve during their admission and 43 patients (54%) were unable to walk on being discharged.
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Project themes Mobilisation Concerns about clinical practice in relation to mobility were identified by the group at the outset of the project. The traditional practice if MSCC was suspected was to nurse patients on strict flat bed rest until completion of radiotherapy. However, this approach was being questioned in the literature and assessment of spinal stability was being suggested as the basis for decision-making around mobility in MSCC (Purdue, 2004). This development was partly influenced by the potential complications associated with bed rest including chest infection, deep vein thrombosis, pressure sores, social isolation and delayed discharge. The project reviewed local mobility practice through two approaches: the audit of care records and a questionnaire distributed to medical and nursing staff in the cancer centre (Warnock et al, 2008). The findings revealed the following contradictions: ■■ 24 (75%) of the doctor respondents said they did not recommend routine bed rest ■■ 22 (69%) of the nurse respondents said patients were
British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 4
Box 1. Signs and symptoms of metastatic spinal cord compression Early signs of spinal cord compression requiring urgent referral (within 24 hours) ■ Pain
in the middle (thoracic) or upper (cervical) spine lower (lumbar) spinal pain ■ Severe unremitting lower spinal pain ■ Significant change in the nature of long-standing pain ■ Spinal pain aggravated by straining (e.g. at stool, or when coughing or sneezing) ■ Localised spinal tenderness ■ Nocturnal spinal pain preventing sleep ■ Progressive
Advanced signs of MSCC requiring immediate referral as an oncology emergency ■ Neurological
symptoms including radicular pain, any limb weakness, difficulty in walking, sensory loss ■ Loss of coordination, paresthesia ■ Bladder or bowel dysfunction ■ Neurological signs of spinal cord or cauda equina compression (National Institute for Health and Care Excellence, 2008; Whigham, 2009)
routinely nursed on flat bed rest until they completed radiotherapy ■■ 44 patients (88%) were found to have been nursed on flat bed rest, with only 8 (16%) having a clinical reason for bed rest documented in their notes. These discrepancies provided good evidence of the need for locally agreed guidance, which was developed in 2007. The guidelines were based on assessment of spinal stability, an approach that was supported by NICE in 2008 (Box 3). By the 2010 audit there had been a marked improvement in practice as it found that only 2 patients (7%) were incorrectly nursed on flat bed rest. It is important to note that mobility guidelines do not remove the need for individual care plans. These will be influenced by factors including the aim and likely outcomes of treatment, prognosis, pain and symptom management, general health and fitness and patient preference. A recent review of the literature concluded that more research is required into mobility practice surrounding MSCC particularly in relation to assessment of spinal stability, timing of mobilisation, use of bracing and patient positioning (Kilbride et al, 2010). The authors of the review concluded that until this evidence exists it is essential that decisions about mobility are based on individual patient assessment. Box 2. Multidisciplinary team members represented in the MSCC group ■ Ward-based
nurses
■ Physiotherapist ■ Clinical
oncology consultant development nurse ■ Social worker ■ Community liaison nurse ■ Oncology pharmacist ■ Occupational therapist ■ Palliative care nurse specialist ■ Dietician ■ Clinical nurse educator ■ Therapy radiographer ■ Practice
S15
British Journal of Nursing.Downloaded from magonlinelibrary.com by 130.113.086.233 on November 18, 2014. For personal use only. No other uses without permission. . All rights reserved.
Identify project themes ■■ Radiotherapy treatment pathway ■■ Mobility pre and post treatment ■■ Steroids and thrombo-prophylaxis ■■ Bowel and bladder management ■■ Rehabilitation and discharge planning ■■ Patients’ priorities and concerns ■■ Supporting early detection
Evaluate the current care given to patients with MSCC in relation to themes Evaluation methods ■■ Audit/service review of practice ■ Review of patient records including: drug charts, nursing and medical documentation, radiotherapy treatment plans ■■ Staff knowledge and attitudes questionnaire ■ Completed by nursing and medical staff in the cancer centre ■■ Research into patient experiences of diagnosis and pre-discharge care ■■ Ongoing clinical experiences of project group members ■ Concerns identified by team members during own clinical practice e.g. in MDT meetings, ward rounds, while caring for MSCC patients
Develop and implement interventions to address issues identified Interventions ■■ Written patient information to support early detection ■■ Mobility guidelines ■■ Bowel management guidelines ■■ Steroid prescribing schedule ■■ Local ‘in-house’ education initiatives ■■ Network-wide education programmes
Review impact and effectiveness of interventions
Refine and/or develop interventions to address issues identified in review
Figure 1. Project outline
High-dose steroids are an important component in the management of MSCC. They are given to reduce spinal oedema with the aim of preventing further deterioration in neurological function and improving pain control (Whigham, 2009). NICE guidance recommends a starting dose of 16 mg of dexamethasone daily (unless contraindicated). This can often be reduced once radiotherapy has commenced so that patients receive steroids for a short period only, to prevent the consequences of adrenal suppression (NICE, 2008). However, doses should be reviewed if the patient’s neurological function deteriorates. Steroid prescribing was included in our audit of care records. In audit one we found a high compliance (92%, 46 prescriptions) with a starting dose of 16 mg of dexamethasone, but wide variation in practice for dose reductions. This
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led to many patients being on steroids longer than the period recommended. As a consequence a steroid-reduction protocol was agreed (Table 2). The second review achieved 100% compliance with the starting dose but variations in the timing of dose reductions remained. Further interventions have been developed to increase compliance including staff education and prominently displayed posters. A further review is required to evaluate their impact.
Thrombo-embolic prophylaxis Patients with cancer are at increased risk of thrombo-embolic disease including deep vein thrombosis and pulmonary embolus (NICE, 2010). The reduced mobility that often accompanies MSCC increases this potential. At the time of the first review the cancer centre did not have agreed guidelines on the use of thrombo-embolic prophylaxis and the use among MSCC patients was very limited (Warnock
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Medications Steroids
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care review Table 1. Demographic and background data on 80 MSCC patients whose care was reviewed as part of the MSCC project Diagnosis Prostate Breast Lung Unknown primary Other
33 13 9 7 13
Gender Male Female
59 21
Age Range 42 to 91 years Mean age of 68 80% of patients were aged over 60 Symptoms at presentation Ability to mobilise Unable to walk Assistance to walk Independent mobility
38 (47%) 23 (29%) 19 (24%)
Urinary symptoms Catheterised Incontinent No problems
37 (46%) 12 (15%) 31 (39%)
Bowel function* Constipation Incontinent No problems
40 (51%) 12 (15%) 26 (33%)
*missing data = 2
et al, 2008). Following the introduction of local and national guidance (NICE, 2010) compliance with prescribing guidelines increased to 83% by 2010. Thrombo-embolic prophylaxis risk assessment completion and prescribing are monitored regularly and this has continued to improve.
Bowel management
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Bowel problems experienced by patients with MSCC vary depending on the location and extent of compression (Warnock et al, 2008). Bowel management should be based on individual patient assessment, but our first review of care identified that only 13 patients (26%) had documented evidence of a bowel management regimen in their records. Bowel management guidelines were written and an MSCC nursing care pathway record was developed to aid documentation. In the second audit 32 patients (63%) had evidence of a bowel management regimen documented. While being an improvement, this highlighted the need for further work in this area. The management of faecal incontinence has also been identified as an area for practice improvement, and this is being developed in consultation with local continence advice services.
Patient priorities and concerns Throughout the project literature, reviews were carried out on each of the project themes. This process revealed that little was known about patient experiences of MSCC. In
British Journal of Nursing, 2014 (Oncology Supplement), Vol 23, No 4
Box 3. Guidelines for mobility in MSCC Patients with MCSS require an individualised plan of care for mobility ■ Nurse
on flat bed rest until magnetic resonance imaging (MRI) carried out and reviewed ■ If there are no signs of neurological or bone instability on assessment sit the patient gradually from supine to 60 degrees in stages over a period of 4 hours ■ Monitor closely for signs of instability including increased pain or neurological symptoms ■ If these occur return the patient to a position where these symptoms cease ■ If a sitting position is achieved the patient can then move on to sitting unsupported, transfers and mobilisation under physiotherapy assessment as symptoms allow ■ If patients have signs of spinal instability and are unsuitable for surgery then bracing may be required. Adapted from National Institute for Health and Care Excellence (2008)
the light of this finding, we developed a descriptive research project, using semi-structured interviews, to explore the experiences of 10 MSCC patients (Warnock and Tod, 2013). All necessary NHS research ethics and governance approvals were obtained. The findings revealed that the main sources of patient concerns were their reduced mobility, loss of independence and the effect this might have on their family. Getting home emerged as a high priority. However they were also anxious about managing at home and the changes to their social life, work and leisure activities. While they talked about their concerns, the participants also emphasised the importance of being positive about their ability to cope. They were keen to develop their functional ability and learn skills that could increase their independence, and described how nurses and allied health professionals could help by providing education, emotional and practical support, and opportunities to practice new ways of coping. Our study found that patients’ priorities for their care were to improve their functional ability, be as independent as possible and get home to be with their family. To achieve this requires effective rehabilitation and discharge planning services (NICE, 2008), and a number of measures were implemented to improve local care. These include early referral pathways to rehabilitation services; discussion of all MSCC patients at the weekly ward multidisciplinary Table 2. Steroid-reducing protocol Day
Dexamethasone daily dose
Administration
1–3
16 mg
16 mg every morning or 8 mg twice daily (8 am, 12 noon)
4–6
8 mg
8 mg every morning
7–9
4 mg
4 mg every morning
10–12
2 mg
2 mg every morning
13
Discontinue
■■ While
the patient is on steroids commence a proton-pump inhibitor for gastric protection ■■ A slower reducing regimen may be required for patients who have received previous courses of steroids ■■ Patients with HRPC (castrate-resistant prostate cancer) should stay on a maintenance dose of dexamethasone (usually 1–2 mg) unless own team decides otherwise.
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Early detection Late detection is a common occurrence in patients with MSCC and many present with advanced symptoms. James and Brooks (2010) attribute this to a failure by three groups to recognise symptoms and take immediate action; the three groups are: patients and carers, primary care services and hospital staff, particularly those in non-oncology settings. Improving detection requires interventions that target each of these three groups. Patient information plays a key role in early detection (Hutchinson et al, 2012) and a local patient information leaflet called ‘Be Bone Aware’ was developed to promote this. The leaflet informs patients about the symptoms of MSCC, and provides information on who to contact if they occur. It is designed to be given to all patients who develop bone metastases and urges them to show it to any health professionals they consult about their symptoms. In recent national guidelines, early detection of MSCC has been identified as a priority (National Cancer Action Team (NCAT), 2011) and it is vital that all health professionals recognise symptoms and refer patients for appropriate care. Protocols and pathways to enable recognition and early referral have been developed for use across the region. An audit of the pathway from detection to referral and treatment is being carried out in accordance with national acute oncology measures (NCAT, 2011).
Conclusion Our project aimed to improve the care of patients with MSCC. The complexity of their care needs was reflected in the project design, which used multiple and different approaches to evaluation and developed a diverse range
Key points n Patients with advanced metastatic spinal cord compression (MSCC) have a wide range of complex physical, psychological and social care needs that require the skills and expertise represented in the multidisciplinary team n This project aimed to improve the care provided to patients newly diagnosed with advanced MSCC and admitted to a regional cancer centre for radiotherapy n Key aspects of the care pathway include patients’ priorities and concerns, mobilisation, steroid prescribing, thrombo-prophylaxis, bowel management, and discharge planning n Patients’ priorities for their care were to improve functional ability, be as independent as possible and get home to be with their families
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of outcomes and interventions to improve care. By using systematic approaches to reviewing care we identified areas for improvement and highlighted the need to standardise care according to best practice. For example, the audit of care records and staff questionnaires identified discrepancies between presumed practice and actual care. This was used to help clinicians recognise the need to agree on protocols and guidelines for MSCC. To date, the project has focused on the needs of patients with advanced MSCC in recognition of the complex physical, psychological and social challenges they face. The consequences of late detection highlight the importance of early diagnosis of MSCC. Reducing the number of patients who are diagnosed with advanced MSCC plays a vital role in improving the quality of life and outcomes for this group BJN of patients. Acknowledgements: The contribution of all the members of the MSCC project group to this work is acknowledged including that of Charles Osguthorpe, Sue Banks and Rebecca Walsh. Conflict of interest: None Funding statement:The patient experience research was supported by the small grants scheme from the Weston Park Hospital cancer appeal Drudge-Coates L, Rajbabu K (2008) Diagnosis and management of malignant spinal cord compression part 2. Int J Palliat Nurs 14(4): 175-80 Eva G, Lord S (2003) Rehabilitation in malignant spinal cord compression. European Journal of Palliative Care 10(4): 148–50 Eva G, Paley J, Miller M, Wee B (2009) Patients’ constructions of disability in metastatic spinal cord compression. Palliat Med 23(2): 132–40 Farrell C (2013) Bone metastases: assessment, management and treatment options. Br J Nurs 22(10 Suppl): S4–11 Hutchinson C, Armstrong M (2010) Development and implementation of regional guidelines for malignant spinal cord compression. Int J Palliat Nurs 16(7): 320-6 Hutchison C, Morrison A, Rice AM, Tait G, Harden S (2012) Provision of information about malignant spinal cord compression: perceptions of patients and staff. Int J Palliat Nurs 18(2): 61-8 James N, Brooks D (2010) Managing patients with metastatic spinal cord compression. Cancer Nursing Practice 9(6): 19-22 Kaplan M (2009) Back pain: is it spinal cord compression? Clin J Onc Nurs 13(5): 592–5 Kilbride L, Cox M, Kennedy CM, Lee SH, Grant R (2010) Metastatic spinal cord compression: a review of practice and care. J Clin Nurs 19: 1767–83 Loblaw DA, Perry J, Chambers A, Laperriere NJ for the Cancer Care Ontario Practice Guidelines Initiative’s Neuro-Oncology Disease Site Group (2005) Systematic review of the diagnosis and management of malignant extradural spinal cord compression. J Clin Oncol 23(9): 2028–37 McLinton A, Hutchinson C (2006) Malignant spinal cord compression: a retrospective audit of clinical practice at a UK regional cancer centre. Br J Cancer 94(4): 486–91 National Cancer Action Team (2011) Manual for Cancer Services: Acute Oncology - Including Metatastic Spinal Cord Compression Measures. Department of Health, London National Institute for Health and Care Excellence (2008) Metastatic Spinal Cord Compression: Diagnosis and Management of Patient at Risk of and with Metastatic Spinal Cord Compression [CG75]. NICE, London National Institute for Health and Care Excellence (2010) Reducing the Risk of Venous Thromboembolism (Deep Vein Thrombosis and Pulmonary Embolism) in Patients Admitted to Hospital [CG92]. NICE, London, Purdue C(2004) Diagnosis and treatment of malignant spinal cord compression. Nurs Times 100(38): 38-41 Warnock C, Cafferty C, Hodson S et al (2008) Evaluating the care of patients with malignant spinal cord compression at a regional cancer centre. Int J Palliat Nurs 14(10): 510-5 Warnock C, Tod A (2013) A descriptive exploration of the experiences of patients with significant functional impairment following a recent diagnosis of metastatic spinal cord compression. J Adv Nurs Jul 19. doi: 10.1111/ jan.12215 Whigham J (2009) Malignant spinal cord compression in a patient with advanced progressive disease. Br J Neurosci Nurs 5(2): 73-8
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team (MDT) meetings; and educational initiatives open to multiprofessional care providers across hospital, community and nursing home settings. Meeting patient priorities for care presents significant challenges to the MDT, the patient and his/her family. Discussions around home care and adaptations mean that the full implications of MSCC have to be addressed very soon after diagnosis. Resource restrictions can also threaten the standard of care that patients receive. In the next phase of the project we plan to evaluate these factors by exploring patient experiences after being discharged from the cancer centre.
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