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Supporting patients with Parkinson's disease

Nicola O'Connell
Freelance healthcare and medical writer

The importance of a multidisciplinary team approach in the management of Parkinson's disease (PD) is now increasingly recognised, and nurses play a key role in forging links with other healthcare professionals and advising patients as necessary. Alongside nurses, GPs, consultants, physiotherapists, dieticians, speech therapists, psychologists and podiatrists may all work together to ensure the patient receives the best possible care.
Nurses, it has now been shown, have several important roles in the treatment of PD, including the practice of skilled clinical care and the provision of advice and education, as well as communicating with patients and carers, and between health and social care agencies. The overall goal is to improve the prognosis and to reduce the impact of the disease on patients and their caregivers.(1) Many nurses find they are the initial contact for any questions and problems arising from PD medication, which is key in improving patients' quality of life.
More and more primary care trusts see the value in appointing a Parkinson's disease nurse specialist (PDNS), particularly as surveys show that 70% of PD patients have no regular contact with consultants and rely entirely on their general practitioners for medical care.(2) There are currently more than 200 PD nurse specialists in the UK, according to the Parkinson's Disease Society (PDS), which aims to have 240 PDNSs appointed by the end of 2006.
Wider acknowledgements of this valuable role are helping to fuel the demand. The recently launched National Service Framework for Long-term Conditions highlights the role of specialist nurses for "providing effective and cost-effective advice and care for people with progressive conditions such as MS or Parkinson's disease". The NICE guidelines for Parkinson's disease, due for publication in 2006, are expected to include a section on PD nurse specialists.
The contribution of nurses has been backed up with various findings. A two-year randomised, controlled trial involving 1,859 patients with PD at general practices throughout England concluded that nurse specialists in PD improved their patients' sense of wellbeing, with no increase in healthcare costs.(2) The contribution that nurses can make to the fulfilment of quality of life, life satisfaction, self-esteem and physical health, as well as the importance of goal setting with the family, was also highlighted in earlier papers.(3)
Annette Bowron, nurse consultant in Parkinson's disease at Northumbria Healthcare NHS Trust, explains that her job involves getting to know individual patients and managing them throughout their illness, as she never discharges them. This includes assessing their needs to ensure that they get the right support, at the right time and from the right person. She explains: "I often feel rather like a taxi driver, as I can steer patients in the right direction at the different stages of their illness. I help to identify and manage problems and refer patients to other healthcare professionals as necessary."

Recognising Parkinson's disease
The PDS estimates that 120,000 people in the UK - or one in 500 of the general population - have PD. Diagnosis usually relies upon physical examination and recognition of at least two of the classic symptoms of PD: resting tremor (which usually appears first on one limb, often spreading to all four limbs as PD progresses); muscle rigidity (which usually presents as a contraction and is experienced as stiffness or soreness); bradykinesia or slowness of movement (even eye blinking and swallowing can be affected); and postural instability (the least-specific sign of PD).
As PD is a progressive disorder, with an increasing number of the nerve cells producing dopamine being lost from the brain, new symptoms may appear over time. There are various tools used to measure disease progression, but one of the most common is the Unified Parkinson Disease Rating Scale (UPDRS), which follows the longitudinal course of PD. The scale records patients' performances in all areas of movement and behaviour.
Eventually movement and balance may become very affected, leading to loss of independence. A number of nonmotor symptoms may also appear (in both late and early disease). These include dementia (one 15-year study showed that 48% of surviving patients were demented at the end of the follow-up period(4)); hallucinations (affecting approximately one-quarter of all patients(5)); depression (prevalence estimated to be up to 40%4); confusion, sleep problems, bladder problems and constipation. Patients sometimes consider these symptoms more debilitating than motor problems.

Treating PD symptoms
Drug therapy is the mainstay treatment of PD; the goals are to preserve function and alleviate symptoms of the disease. Therapies focus on replacing dopamine, or augmenting its effects in the central nervous system.
There is currently no "perfect drug" for treating PD, as each treatment has its shortfalls and side-effects, but with new therapies comes new promise for PD patients. Most recently - in July 2005 - rasagiline 1mg (Azilect) was introduced as a new option for PD patients. This second-generation, selective, irreversible inhibitor of the enzyme monoamine oxidase-B (MAO-B), which breaks down dopamine in the central nervous system, demonstrated efficacy when prescribed as an adjunct therapy to gold-standard therapy levodopa in later disease, and as monotherapy for patients with early disease. The drug is taken as a single daily dose.
Study results of rasagiline's efficacy and tolerability were presented at the 9th International Congress on Parkinson's disease last year. In later disease, rasagiline demonstrated efficacy as adjunct therapy to levodopa in alleviating symptoms experienced by patients receiving levodopa for moderate-to-advanced PD. Levodopa - which can be taken up by the cells in the brain and converted to dopamine - is still the mainstay treatment for PD 35 years after its launch, and for many patients this drug has a dramatic effect on PD.
However, the effectiveness of levodopa begins to wear off after four to five years, commonly associated with dyskinesias and fluctuations. Therefore other agents are added to the levodopa regimen to alleviate symptoms and reduce "off" time, when the medication wears off between doses. These agents may include MAO-B inhibitors, catechol-O-methyltransferase (COMT) inhibitors and dopamine agonists.
The PRESTO study (Parkinson's Rasagiline: Efficacy and Safety in the Treatment of "OFF") showed that rasagiline decreased "off" time significantly and also improved the main Parkinson's disease cardinal signs of tremor, rigidity and bradykinesia when compared with placebo.(6) The drug is well tolerated, even in patients over 70 years of age. Some of the side-effects appearing in clinical trials included headache, flu-like symptoms, malaise, neck pain and stomach irritation.
Due to the complications associated with long-term use of levodopa, the therapy is usually reserved for patients who have more advanced PD, with other agents used in place of it in earlier disease (normally MAO-B inhibitors or dopamine agonists as COMT inhibitors have no antiparkinsonian effect on their own and are only used as adjunct therapy to levodopa). The role of rasagiline in early disease was evaluated in the 26-week, 404-patient randomised, double-blind TEMPO study (The Early Monotherapy for Parkinson's disease Outpatients), which investigated rasagiline against placebo.(7) Those patients taking rasagiline maintained the total UPDRS score that they had at the beginning, but patients taking placebo worsened by four points on the scale.
Dopamine agonists mimic the actions of dopamine in the central nervous system, and they are effective for many patients (particularly in controlling stiffness and slowness of movement). The side-effects of dopamine agonists, nevertheless, can be problematic for patients. In addition to many of the side-effects experienced with levodopa, such as gastrointestinal upset and somnolence, hallucinations and somnolence can occur more frequently with dopamine agonists. Thus these agents need to be used with caution among the elderly. Dopamine agonists also require multiple dosing, which can be difficult for some patients.
Other less frequently used drugs to help treat PD include apomorphine (used for patients who experience severe "off" periods), anticholinergics (effective but associated with more side-effects than levodopa or dopamine agonists) and amantadine (which is shown to provide moderate relief of PD symptoms).

Monitoring medication
Given the importance of medication in PD and some of the inevitable side-effects, discussing treatment options with patients and monitoring medication progress is a significant part of the PD nurse specialist's role. "Medication has a major impact on day-to-day life, so many patients like to find out as much as they can and discuss the pros and cons of different options," says Ms Bowron. "We discuss how each drug works and go through the main side-effects that they may experience. Some patients do very well with particular drugs while others do not - so it can be very difficult to predict how patients will respond. I always make sure that patients feel free to call any time about any problematic side-effects, or any other problems, that they experience. It's very important to have that relationship with the patients."
As establishing good communication is so critical, Ms Bowron believes in providing as many points of access as possible, including telephone support, email, nurse-led clinics and support groups. "We aim to support and empower patients, so that they are not dependent on us," she explains.

Whether educating patients or helping them to cope with medication side-effects, or liaising with other members of the primary or secondary care teams, nurses can have a significant impact on PD patients' overall wellbeing.
Staying up to date with new treatments is vital, as helping to ensure that patients are taking the most suitable PD drug for their needs can make a major difference to the patients themselves, their families and their carers.


  1. MacMahon DG, Thomas S. Practical approach to quality of life in Parkinson's disease: the nurse's role.J Neurol 1998;245(S1):S19-22.
  2. Jarman B, Hurwitz B, Cook A, Bajekal M, Lee A. Effects of community based nurses specialising in Parkinson's disease on health outcome and costs: randomised controlled trial. BMJ 2002;324:1072.
  3. Fitzimmons B, Bunting LK. Parkinson's disease; quality of life issues. Nurs Clin North Am 1993;28:807-18.
  4. Hely MA, Morris JG, Reid WG, Trafficante R. Sydney multicenter study of Parkinson's disease: non-L-dopa-responsive problems dominate at 15 years. Mov Disord 2005;20(2):190-9.
  5. Friedman A. Old-onset Parkinson's disease compared with young-onset disease: clinical differences and similarities. Acta Neurol Scand 1994;89(4):258-61.
  6. The Parkinson's Study Group. A randomised placebo-controlled trial of rasagiline in levodopa-treated patients with Parkinson's disease and motor fluctuations. Arch Neurol 2005;62:241-8.
  7. The Parkinson's Study Group. A controlled trial of rasagiline in early Parkinson disease: the TEMPO study. Arch Neurol 2002;59(12):1937-43.

Parkinson's Disease Society

Parkinson's Disease Nurse Specialist Association