Catherine Young, BSc, RGN, RMN.
Clinical Nurse Specialist in Movement DisordersDeep brain stimulation is becoming the most frequently used neurosurgical treatment for patients with complex Parkinson's Disease. The movement disorder team at Dundee neurosciences department, Ninewells Hospital, recognised that the level of support available to patients undergoing this treatment was limited, and that this need could be met by appointing a clinical nurse specialist (CNS).
Deep brain stimulation is becoming the most frequently used neurosurgical treatment for patients with complex Parkinson's Disease. The movement disorder team at Dundee neurosciences department, Ninewells Hospital, recognised that the level of support available to patients undergoing this treatment was limited, and that this need could be met by appointing a clinical nurse specialist (CNS).
The creation of the first Scottish post of CNS in movement disorder provided the opportunity to review the patient's journey through deep brain stimulation and identify the specific role neuroscience nurses play in the care of these patients.
The CNS identified three aims. To:
- Review the experience of patients and relatives
- Identify their needs throughout the process
- Collaborate with the neuroscience nurses and the multidisciplinary team.
This paper describes how these three aims were achieved for an emerging treatment through the CNS role.
Parkinson's disease and deep brain stimulation
In the UK, one in 500 people (about 120 000 individuals) have Parkinson's disease (Parkinson's Disease Society, 2001). Patients with complex Parkinson's disease can have symptoms of tremor, bradykinesia, rigidity and dystonia that are insufficiently controlled by drugs. They can also experience unpredictable motor fluctuations as a result of long-term levodopa therapy coupled with advancing disease. These patients may wish to consider functional stereotactic deep brain stimulation, a minimally invasive, reversible and adjustable neurosurgical technique to suppress their symptoms.
Deep brain stimulation is performed in three stages and is effective in reducing the muscle stiffness, spasms, tremor and the complex motor fluctuations that are a feature of advanced Parkinson's disease (Valldeoriola et al, 2002). One or two permanent electrodes are inserted deep into the brain. They are then attached to a programmable, battery-operated pulse generator implanted in the subcutaneous tissue of the upper chest wall below the clavicle. Stimulation can be switched on and off externally by a therapy controller (Benabid et al, 1996).
Differences in method
In Dundee neurosciences unit deep brain stimulation is performed in three stages (Table 1), spread over two to three weeks during two separate hospital admissions, allowing the patient to recover from each stage before proceeding to the next. Some other centres prefer to perform all three stages in one day.
The resurgence of neurosurgery
The progressively disabling symptoms of Parkinson's disease are thought to be the result of deteriorating chemical function in the basal ganglia and, more specifically, in the nigrostriatal dopamine pathway. The causes of these chemical changes remain unknown and it has become the quest of Parkinson's specialists to identify ways of improving symptom control for these patients.
Although neurosurgery has been available since the 1930s (Tornqvist, 2001) the discovery of levodopa in the 1970s, still hailed as the gold-standard drug for the treatment of Parkinsonian symptoms, led to its virtual cessation. In recent years several issues have renewed the focus on neurosurgery, including a greater understanding of the physiology of the basal ganglia, advances in cerebral computerised tomography (CT), magnetic resonance imaging (MRI) and computer technology.
Evidence has emerged of the limitations of drug therapy and the disabling side-effects of long-term levodopa use (Crabb, 2000). This, along with increased patient awareness, expectation and demand for alternative therapies, has led to a resurgence in neurosurgical treatments.
Since the mid-1990s Dundee has hosted the only neurosciences centre in Scotland providing deep brain stimulation for patients. Twenty people with Parkinson's disease have received the treatment in Dundee to date since 1995. The CNS in movement disorders post was created in 1999 to enhance the existing service and improve the advice and education to patients and other health professionals, while establishing a direct point of contact.
On her arrival, the CNS conducted a review of each patient's journey and service received. Patients' and relatives' views were gathered. The aim was to build a partnership between them and health professionals to find the best solutions to the patients' problems, empowering them with information and enabling them to contribute ideas on their treatment (DoH, 2001). The review found that patients and relatives had limited access to information or professional support regarding deep brain stimulation in their local areas. Patients expressed a need for more information. As Coyle (2000) states, 'information is crucial to any decision-making process and enables all concerned to make the right decisions'.
The CNS and the neurosciences practice development nurse collaborated to compile an information leaflet. Following referral from their Parkinson's disease specialist or GP the patient's first contact with the movement disorder team, namely the neurologist, neurosurgeon and CNS, is at the clinic appointment to discuss the procedure and their eligibility. Then the CNS gives the patient the leaflet, reinforcing what they have been told (Raisbeck, 2000), with the nurse's phone number. Patient feedback helped improve the leaflet. A performance indicator was written to assess its effectiveness and the leaflet is reviewed annually.
Encouraging patients to contact the CNS emphasises the educator role, considered the most influential part of specialist nurses' work (Ryan, 1996).
Assessment: the start of the patient journey
When the patient decides to proceed with surgery, they have an inpatient pre-operative assessment for three days in the neurology ward. Assessments are planned and co-ordinated by the CNS with neurology nursing staff, and the patient is given an assessment timetable for the days ahead.
During the patient's stay the occupational therapist, speech and language therapist and physiotherapist may be involved in assessing their ability to perform activities of daily living. A multidisciplinary approach is adopted in most departments undertaking this surgery (Varma, 2001). Neuropsychological performance, social function and, perhaps more significantly for the patient, quality of life are assessed. The assessment by the neuropsychiatrist is the most extensive and time-consuming part of the programme and is essential in clarifying the patient's mental health, paramount in the decision to proceed with surgery.
The CNS completes a Parkinson's nurse specialist assessment focusing on disease symptoms, pain, activities of daily living, sleep, constipation, urinary problems, relationships, sexual issues, medication and its side-effects. The patient assessment tools are summarised in Table 2. Careful observation and completion of rating scales pre- and postoperatively permit evaluation of the treatment and demonstrate achievement of optimal therapy (Tornqvist, 2001).
Such rigorous probing can be distressing for the patient and may force them to acknowledge the effect of Parkinson's on their quality of life, independence, personal aspirations and relationships. The neurology nurses and CNS work together to promote a relaxed and supportive environment, encouraging the patient to express their needs, in particular the wish to self-medicate. The inflexible drug administration system in hospitals may be a source of anxiety for people with Parkinson's disease (Hearne and Preston, 2000). Anti-Parkinsonian medication should be administered at the same time intervals as when patients are at home, to provide an accurate picture of their symptoms and the medication's response. Knowledgeable nurses understand the need for flexibility and the need to work with expert patients.
Continuous observation and support is essential as the assessment programme progresses. The patient should be encouraged to take an active role. The neurology nurses' opinion following observation and interaction with the patient throughout the period of hospitalisation is a vital part of the assessment process. They can provide a concise and detailed account of the patient's daily motor and social function. Inadequacies of current medication are noted, such as wearing-off effects, and motor complications (Table 3). Particularly significant is the relation of these motor complications to dosage and timing of medication.
The criteria for proceeding with deep brain stimulation (Parkinson's Disease Surgical Steering Committee, 2002) are that:
- The patient is in good general health
- The patient has no depression or dementia
- The patient is able to co-operate with the rigours of surgery and postoperative demands
- The Parkinson's disease is not controlled by current medication.
The movement disorder team meets the patient and relatives on the day of discharge to discuss the outcome of the assessment. If the patient has met the necessary criteria and decides to proceed, an application for funding is made to their local health board. It may take three months for the board to decide and this can be an anxious time for patients. Once financial support is confirmed a surgery date is arranged. Patients with complex Parkinson's disease may become increasingly dependent on their relatives for support and advocacy. Relatives should be able to express their concerns and the CNS must address their needs.
Stage one - At the Dundee neurosciences unit deep brain stimulation is performed in three separate stages (Table 1), spread over two to three weeks during two separate admissions. The patient first meets the neurosurgical nursing team when admitted for three days to undergo stage one. The day after arriving the patient visits the operating theatre. Once anaesthetised, a stereotactic frame is placed on the patient's head and they undergo CT and MRI scans of the brain. Stereotactic surgery is used for the precise location of a specific anatomical target point based on three-dimensional co-ordinates. This ensures minimal trauma to the adjacent tissue (Hickey, 1997).
The successful outcome of the surgery depends on this preparatory stage. The CT and MRI scans are examined by the neurosurgeon and the information they contain enables planning and identification of the agreed target site for positioning the electrodes. Bilateral craniotomies are performed for the insertion of guiding markers before the patient is awakened from the anaesthetised state and returned to the ward. Once the patient has been reviewed by the neurosurgeon the following morning they are usually discharged home to await re-admission for stages two and three. They can contact the neurosurgical ward or the CNS at any time if they have concerns.
Patients and particularly relatives are concerned about pain and fatigue following this stage and usually contact the CNS at least once before admission for stage two. The unique communicator/carer role of the CNS (McCreaddie, 2001) is of key importance in this situation, particularly for those who live outside the region. Care from an established and knowledgeable team of nurses within the neurosurgical ward allows the patient to gain confidence in those who will look after them during the following admission.
Establishing a relationship where the patient and relatives feel adequately supported and informed is crucial. Hickey (1992) says stresses incurred by neurological illness are significant and require the support and assistance of health professionals for the family to make a realistic adjustment.
Stage two - Stage two is the most arduous for patients. They are supported by the CNS, or accompanied by one of the theatre nursing team. Their anti-Parkinsonian medication is withheld for 12 hours before the procedure, ensuring their symptoms are fully evident in theatre. The patient must be awake to perform several motor tasks, enabling the neurophysiologist and neurosurgeon to assess the clinical effects of stimulation.
The neurophysiologist monitors recordings of brain function to confirm the correct site has been achieved for implantation of the electrodes. When the patient returns to the ward, to recover, their Parkinson's symptoms may be exacerbated, and they must have their medication restarted as soon as possible to re-gain control of their symptoms. They are usually exhausted and possibly confused for the initial 24-hour postoperative period and they and their family may need reassurance and explanation from the neurosurgical nursing team about the wires protruding from their head and the attached trial stimulation device.
The patient can need several days to recover from this stage and the nursing team quickly recognises when involvement of other members of the multidisciplinary team is appropriate. Patients may experience dysarthria, fatigue and cognitive deficits initially, depending on the site of stimulation (Bain, 2002). The CNS provides support and advice to the nursing team or the patient. The level of stimulation is reviewed daily by the neuromodulation technician and adjustments are made to achieve the best possible results before stage three.
The patient, family and nursing team observe the effect of stimulation on symptom control.
Stage three - A few days later the patient returns to theatre for the third and final stage. They come back to the ward with the generator in place and the wires connecting the fine electrodes to the implantable pulse generator (IPG) are internalised and hidden under the scalp. The only visible signs are the scalp wounds, chest wound and pacemaker-type protrusion of the IPG from the chest wall. Stimulation is usually turned on the following day and adjusted daily by the CNS with the neuromodulation technician, in consultation with the neurologist and neurosurgeon, until optimum stimulation and symptom management are achieved. It can take time for the patient to adjust to the effects and at first their expectations may not be met. Neurosurgical nursing staff provide feedback and arrange referral to other team members.
Once optimum stimulation has been achieved, the multidisciplinary team plans the patient's discharge with the patient and family. The loss of daily contact with the specialist team can be difficult at first. To alleviate the sense of isolation the CNS refers the patient to their local community health-care team, who receive the necessary information and education to care for the patient.
We remind patients to contact the neurosurgical nursing staff, neuromodulation technician or the CNS if they need advice. The CNS continues to provide ongoing support for the patient, relatives and professionals through telephone contact.
A discharge summary is sent to the patient's GP, including contact numbers for relevant movement disorder team members. The CNS phones the patient the first week after discharge to monitor the effect of stimulation and provide advice.
The patient receives a follow-up appointment at the neuromodulation clinic in about two months. The CNS sees the patient at her outpatient clinic two weeks after discharge to review progress.
This level of support continues, particularly during the stabilisation period of four to six months. The aim is to achieve a comfortable, effective level of stimulation, which controls symptoms adequately, in combination with drug therapy, and only requires an annual review at the neuromodulation clinic.
Deep brain stimulation is a significant and valuable method of symptom management for some patients with advanced Parkinson's disease. In the authors' experience it has made a significant difference to the quality of life of carefully selected patients.
The procedure is unique, involving the skills of all staff in the neurosciences unit. Its introduction has enhanced the knowledge of all involved, especially with regard to the patient's experience of Parkinson's disease. Working relationships have become closer and communications have improved within the team. The CNS role has had a significant impact on the patient's experience, ensuring their needs are met by the neuroscience and multidisciplinary teams.
Bain, P. (2002)Medical and Clinical Issues of Stereotactic Surgery. Presentation at Parkinson's Disease Nurse Specialist Association Conference. Nottingham City, 20 May.
Benabid, A.L., Pollack, P., Hoffman, D. et al. (1996)Chronic electrical stimulation of ventralis intermedius nucleus of thalamus as a treatment of movement disorders. Journal of Neurosurgery 84: 2, 203-214.
Coyle, M.A. (2000)Meeting the needs of the family: the role of the specialist nurse in the management of brain death. Intensive and Critical Care Nursing 16: 45-50.
Crabb, L. (2000)Motor fluctuations in Parkinson's disease. Professional Nurse 15: 4, 273-277.
Department of Health. (2001)The Expert Patient. A new approach to chronic disease management for the 21st century. London: DoH.
Fahn, S., Tolosa, E., Martin, C. (1993)Clinical rating scale for tremor. In: Jankovic, J., Tolosa, E. (eds.). Parkinson's Disease and Movement Disorders. Philadelphia, Pa: Lippincott, Williams and Wilkins.
Hearne, J., Preston, S. (2000)Chapter 20. In: Griffiths, R.K., Coene, E.H. (eds.).Parkinson's Disease Self-care Manual. Amsterdam: September Foundation.
Hickey, J. (1992)The clinical practice of neurological and neurosurgical nursing (3rd edn). Philadelphia, Pa: J.B. Lippincott.
Hickey, J. (1997)The clinical practice of neurological and neurosurgical nursing (4th edn). Philadelphia, Pa: J.B. Lippincott.
Jenkinson, C., Fitzpatrick, R., Peto, V. (1998)The Parkinson's Disease Questionnaire User manual for the PDQ-39, PDQ-8 and PDQ summary index. Oxford: Joshua Horgan Print Partnership.
McCreaddie, M. (2001)The role of the clinical nurse specialist. Nursing Standard 16: 10, 33-38.
Parkinson's Disease Surgical Steering Committee. (2002)Clinical Trial Protocol. Birmingham: University of Birmingham Clinical Trials Unit.
Parkinson's Disease Society. (2001)Website. Accessed January 2003. www.parkinsons.org.uk
Raisbeck, E. (2000)The write stuff. Nursing Standard 14: 37, 19-20.
Ryan, S. (1996)Defining the role of the specialist nurse. Nursing Standard 10: 17, 27-29.
Tornqvist, A.L. (2001)Neurosurgery for movement disorders. Journal of Neuroscience Nursing 33: 2, 79-81.
Valldeoriola, F., Manuela, P., Tolosa, E. et al. (2002)Bilateral subthalamic stimulation monotherapy in advanced Parkinson's disease: long-term follow-up of patients. Movement Disorders 17: 1, 125-132.
Varma, T.R.K. (2001)Neurosurgery. In: Playfair, J.R., Hindle, J.V. (eds.). Parkinson's Disease in the Older Patient. London: Arnold Publishing.
Wade, D.T. (1992)Measurement in Neurological Rehabilitation. Oxford: Oxford University Press.