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Diagnosis of Parkinson's disease: why patient education matters

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Joy Reid, BN, RN.

Parkinson's Disease Nurse Specialist, Fife Acute Hospitals NHS Trust, Victoria Hospital, Fife

Parkinson's disease is a progressive neurological condition, which affects over 120 000 people in the UK. It is caused by the premature death of cells in the substantia nigra in the brain, which produce dopamine. Dopamine is a neurotransmitter that facilitates voluntary movements in the body, for example, walking, talking, eating and smiling.
Parkinson's disease is a progressive neurological condition, which affects over 120 000 people in the UK. It is caused by the premature death of cells in the substantia nigra in the brain, which produce dopamine. Dopamine is a neurotransmitter that facilitates voluntary movements in the body, for example, walking, talking, eating and smiling.


The disease slowly robs people of their independence and their ability to carry out activities of living in a normal manner. Patients with Parkinson's disease are threatened with a variety of losses in body image, mobility, social role and independence (Abudi et al, 1997).


The Parkinson's nurse specialist post in Fife has been running for about two years and is mainly based in a small specialist Parkinson's disease clinic at Victoria Hospital, with plans to improve the service available in other hospitals in Fife. We believe patients need and deserve education and support from health professionals to enable them to understand the disease and its implications.


This paper reviews the literature on the common reactions of patients at diagnosis, the needs of patients at diagnosis, and the importance and value of patient education. The literature review searched the nursing and medical databases - Cinahl, Medline and the British Nursing Index - and spanned a period covering the past 10 years.


There is a gap in the literature relating to the benefits of education for patients and carers dealing with Parkinson's disease. But many findings on chronic illness can be applied to Parkinson's disease, which is essentially a chronic condition.


The review highlights the need for professionals to improve what they do for newly diagnosed patients.


Impact of diagnosis
It can be daunting to be told that you have Parkinson's disease and patients will react in a variety of ways. Diagnosis may be received with feelings of horror, fear, isolation, guilt, anger and injustice (Baker and Smith, 1991).


It is a life-changing illness that affects many aspects of life and being (Habermann, 1999). Diagnosis, therefore, comes as a terrible shock for many patients, who have to deal with the painful adjustment to the idea of being subject to a disease process (Parkinson's Disease Society, 1994).


At first, patients' reactions and feelings during the diagnostic phase of any chronic illness may vary from unconcern to real fear (Corbin and Strauss, 1988). In the experience of our clinic these observations apply to patients with Parkinson's.


Chronic illness can have a huge 'emotional and psychological impact' (Peace, 1992). Marr (1991) reiterates this, saying: '... living with the impact of the disease began with an acceptance of the diagnosis and involved a series of personal losses.' General feelings of anger and despair are extremely common in our experience.


Abudi et al (1997) report anxiety, depression or panic as common responses in the early stage of the disease process, often followed by hostility, withdrawal and dependency. Livesey (1992) substantiates these common feelings.


Pinder (1992) looked at doctors' and patients' perspectives on the diagnosis of Parkinson's disease. In general, the doctors viewed diagnosis as a relief, in that they could place patients in the appropriate pigeonhole and get on with managing the condition. Some doctors made comments such as 'there are worse things' and believed that patients would be able to view the diagnosis as part of the ageing process.


The patient perspectives, however, were very different. Most viewed the diagnosis as not only a significant turning point in their lives, but also often as a life crisis. Many experienced utter turmoil and expressed feelings such as shock, bewilderment, confusion and relief. Patients did not have the medical knowledge to compare their disease to other disorders and conditions, and so were unable to rebuild experiential wholeness and adjust to their illness. It was a time of chaos and patients found their lives shattered.


Price (1996) agrees with Pinder about the differing views of patients and professionals. 'The impact of any chronic illness upon patients and their relatives is frequently underestimated by health-care professionals who gain brief and privileged insights into their circumstances.'


Patients' opinions
The recent Global Parkinson's Disease Survey (Findley, 1999) looked at factors impacting on quality of life. The steering committee discovered that satisfaction with the explanation of the condition at diagnosis has a significant impact on quality of life.


Patients and patients' groups identified the following as major factors affecting quality of life (Findley, 1999):


- The process of communicating the clinical diagnosis


- Patients' ability to gain access to information


- Professional contact


- Access to and use of a patient support group.


In a membership survey for the Parkinson's Disease Society, Yarrow (1999) asked patients to evaluate their diagnosis. Fewer than half of the respondents with Parkinson's disease (n = 1693) thought they had a clear explanation at diagnosis. Most wanted more information on the condition and how to cope with it.


Patients and their families often have to cope with the variable and disabling aspects of these disorders alone (Oxtoby, 1982). Yet they want counselling and timely, appropriate information, which helps them accept the diagnosis and make informed choices, thus empowering them (Noble, 1998).


Patients want to take an active part in the management of their illness (Baker, 2000) and need information to do so. The many telephone calls we receive from patients and carers asking for more information is testimony to this.


Professionals' opinions
Much of the literature highlights the importance of patient and carer education and effective communication, without actually explaining why (MacMahon et al, 1990; Livesey, 1992; MacMahon and Thomas, 1998).


In Meeting a Need? the Parkinson's Disease Society (1994) says: 'In the first years the main needs of patients are an accurate diagnosis, informed treatment and sensitive counselling.' This allows them to promote a generally healthy lifestyle that may reduce the impact of symptoms after diagnosis (Bunce, 1998). Anecdotal evidence from our clinical area has highlighted why patient education is so important (Box 1).


Patient education
As stated earlier, the literature that focuses specifically on Parkinson's disease is limited. This paper, therefore, reviewed literature covering chronic illness in general.


The NHS Executive (1997) states: 'Health authorities and service providers should ensure that good quality information is available to patients to look after themselves better, know when and how to seek help so that they can play an active role in decisions about their own care.'


Morgan (1994) says: 'Client education is a dynamic interactive process that can be achieved through a dual perspective of nurse-client empowerment.' However, patient education should not be the sole responsibility of the nurse, but that of all health professionals.


Parkinson's Aware in Primary Careexamined four stages of Parkinson's disease and appropriate management (Parkinson's Disease Task Force, 1999). The aims of the diagnostic stage were establishing the patient's understanding and communicating information to achieve acceptance of the diagnosis, reduce distress, control symptoms and improve prognosis.


Patients who do not receive information and education may display negative emotions towards their condition and health-care professionals. Rankin and Stallings (1990) state: 'Feeling powerless is perhaps the most devastating aspect of the illness for the patient.' Resistance to help can sometimes be traced back to the way a person was diagnosed and how they were informed about their condition (Ward, 2000).


Patients want more information at diagnosis and experts have recognised this as an important aspect of disease management, enabling acceptance and a more positive outlook. Marr (1991) and Noble (2000) believe acceptance allows patients to make the effort to pursue their goal of maintaining independence and normality.


Patients are more likely to trust and accept the help and support of professionals who are better aware of their condition. Patient education allows patients to retain autonomy, regain control of their lives and empowers them to be the chief decision maker (Rankin and Stallings, 2001; Sweetland, 2000; Warner, 2000).


Education about living with a chronic illness is invaluable in helping people change attitudes (Peace, 1992). Cooper (1998) highlights studies showing that patients' perceptions and beliefs regarding their chronic illness can affect their compliance with medication and resulting clinical outcome.


In other fields of medicine such as diabetes, myocardial infarction management and cancer, patient education helped to reduce pain and anxiety (Brown, 1997; Poroch, 1995).


Education can have significant benefit on quality-of-life issues and a bearing on health-care resources and thus economic implications. Similar benefits have been witnessed in our clinical area. Patient education, however, cannot be a blanket exercise. It must be tailored to each individual, in the context of their life (Brown, 1997; Harris et al, 1998). Caregivers must avoid stereotyping (Abudi et al, 1997).


One recent example from our clinic was when a consultant tried to discuss anti-Parkinsonian medication with a patient whose level of understanding was considerably lower than that of the better informed previous patient. The nurse specialist spent much time with the latter afterwards explaining what the consultant had said.


Patients attending our clinics now receive an information pack. The nurse specialist follows them up at a later date to give them the opportunity to ask questions and discuss what they have read. Patient feedback about the pack is encouraging.


The nurse specialist role means time can be spent with patients to aid their understanding about Parkinson's and its management - an integral part of the nurse specialist's practice (Whitehouse, 1994; Calne, 1994). Education is also an important function of dedicated multidisciplinary Parkinson's disease clinics (MacMahon et al, 1990; Bhatia et al, 2001).


Conclusion and recommendations
This literature review has highlighted the importance of effective patient education to facilitate positive outcomes. Although a body of literature is available on education in chronic illness, more specific research is needed on the benefits of education for patients with Parkinson's disease.


Patient education in other areas of disease management has multifactorial benefits, including:


- Improved quality of life


- Reduced carer burden


- Reduction in pain and anxiety


- Economic benefits in relation to use of limited health-care resources.


Clinical practice in our area has been modified in response to the literature findings (Box 2) and patients have welcomed the changes.

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