PD Nurse Specialist -
Literature Review
Janet Doherty BN; Cert Gerontology: MNurs.
Orna Moore RN MA
In
1817 the English physician, Dr James Parkinson, described the
progressive neurological condition which was later to bear his name. He
had no understanding of the causation of the disease and few
suggestions for treatment but his detailed and sensitive observations
of the impact of the condition on all aspects of daily life have
ensured his place in history. He would be amazed to see the medical,
pharmaceutical, surgical and nursing developments of the Twentieth
century which have, in part, lessened the burden experienced by those
living with Parkinson's disease (Pd).
Pd is a global phenomenon being recognized in all cultures and is
estimated to affect approximately 6 .3 million individuals worldwide
(Working Group on Parkinson’s Disease 2003) however exact figures are
not available from any source. The prevalence of Pd in the United
Kingdom is estimated as 1.6 per 1000 (Jarman et al, 2002) and as more
than 1.5 million people living with Pd in the United States of America
(American Parkinson Disease Association, 2003). The far reaching impact
of the disease due to both motor and non motor symptoms and
complications demands more than pharmaceutical management in isolation.
Pd is unique amongst neurological conditions due to the fluctuating
nature of the symptoms and response to treatment, the ongoing need for
medications to be monitored and adjusted and the short half life and
reduced efficacy of the treatments. These identified needs combined
with a passion for optimum patient care lead to the development of the
role of the Parkinson’s Disease Nurse Specialist (PDNS).
The
PDNS role was initially introduced in Cornwall, United Kingdom in 1989
under the auspices of The Parkinson’s Disease Society (PDS). This nurse
position was originally funded from a research project but based within
the National Health System to facilitate the ongoing development of the
role. Since 1992 the role has expanded to serve the needs of people
with Pd UK wide due to collaboration with the major pharmaceutical
companies involved in Parkinson’s treatment, health authorities and the
Parkinson’s disease associations. The role of the PDNS is diverse and
these practitioners are specialist professionals who exercise high
levels of judgment, discretion and decision making in clinical care.
They monitor and improve standards of care through supervision of
practice and clinical audit. In addition they provide skilled
professional leadership and develop nursing practice through research,
teaching and support to colleagues in other disciplines (Royal College
of Nursing, 1999).
In
1997 the vision of the PDS was to have in place 100 nurse specialists
by 2000. By 2007 the positions held by PDNS have expanded to 232 (UK)
and the service has been adapted and introduced in Europe, USA, Canada,
Israel, Scandinavia, and Australia. The advent of the role of PDNS has
transformed the care and approach to caring for people with Parkinson’s
and associated movement disorders globally. However as with expansion
of any service it is imperative that the quality of the role is
maintained by standardization and monitoring of the position holders,
qualifications and care delivered.
Incorporated
into the original development of the role was the provision for
evaluation of the outcomes and cost effectiveness of the service.
(Parkinson’s Disease Society (1997). A search of the literature
revealed that the benefits of the PDNS role have been explored and
evaluated utilizing case histories, qualitative, quantitative and cost
effectiveness approaches. Conversely the literature search revealed
that there is a paucity of review of the services as provided by the
PDNS globally. This paper reviews the literature available and will
identify potential gaps in the review process.
As
the role developed it has become apparent that the PDNS has several key
functions in the management of Pd. These include the delivery of
skilled clinical care, the provision of advice and education,
communicating with patients and carers and also between health and
social care agencies (McMahon & Thomas 1998). One of the unique
roles of the nurse specialist is the co-ordination of services and
cooperation with other members of the health care team (Calne, 1994;
Vernon, 1998). In addition the nurse acts as a link between the
patient, hospital and community services to meet the needs of both
patient and carer (Whitehouse, 1994).
Livesey (1992) outlines by
case history the positive nature of nurse involvement with both patient
and family carer. She identifies the suitability of a nurse as a
resource person utilizing research based knowledge. Maguire (1997)
encourages nurse specialists working with patients with Pd to become
involved promptly following diagnosis in order to educate, assess and
monitor for potential problems.
In
1998 the Parkinson's Disease Society nurse working party accepted that
a PDNS be defined as a nurse specialist with extended knowledge and
skills in PD management. She/he is an educator, manager, researcher,
communicator and innovator in addition to being professionally
responsible for her/his actions (Royal College of Nursing, 1999). With
advances in surgical treatment for Pd the role of the nurse has
developed a further specialization, Young et al (2003) describes the
role of a nurse specialist in conjunction with a multidisciplinary team
in the specialized care of patients undergoing Deep Brain Stimulation.
McMahon (1999) outlines the areas
where a nurse specialist can augment and ameliorate the care delivery
provided by the physicians and neurologists. He cites monitoring of
effects and side effects of medications, telephone support and
counseling as some of the benefits of a nurse specialist role. At this
time he identified the need for an evaluation of the cost effectiveness
of the role. In addition to nurse generated evaluations and
publications, the United Kingdom based medical fraternity involved in
the management of Pd patients has carried out independent studies of
the effectiveness of the role.
Jarman et al (2002) showed, in a two year
randomized controlled trial (n=1859), that there was a significant
improvement in the subjective well being of patients cared for by a
nurse specialist. This improvement was achieved without an increase in
health care costs. The authors emphasize that a reported improvement in
subjective well being is significant when one is assessing a relentless
progressive condition such as Pd. These findings are echoed by Horrocks,Anderson
and Salisbury (2002) who carried out a meta-analysis of randomized
controlled and observational studies comparing British nurse
specialists and doctors providing care at first point for patients with
a variety of conditions. The results indicated that the nurse
specialists provided longer consultations and that the patients
reported a higher degree of satisfaction when dealing with nurses
working at an advanced level.
More recently, costing effectiveness for the role
of the PDNS has been incorporated into the evaluations. Hobson et al
(2003) evaluated the cost effectiveness of a Parkinson’s nurse service
one year following the introduction of the service. The study indicates
that the estimated potential cost saving of employing a PDNS was £
54,992. In another evaluation study Hurwitz et al (2005) indicate that
while the group of patients attended by a PDNS reported better scores
on a global heath assessment than the control group, there was no
significant difference in the quality of life scores between groups.
While costings increased during the two year period of this study for
both the control group and the group exposed to a PDNS the group
attended by a nurse incurred a lesser increase (£226 less). NICE
guidelines (2006) reminds us however that all of the evaluation study
environments vary greatly as some studies recruited patients in GP
practices while others evaluated those attending specialist neurology
clinics.
The
literature reviewed emphasizes the contribution that nurses make to the
fulfillment of quality of life, satisfaction, self-esteem and physical
health and also the importance of setting goals with the patient and
family (Fitzsimmons & Bunting, 1993; Livesey, 1992; MacMahon &
Thomas, 1998).
As the PDNS service proves to be effective by
ameliorating the quality of life of Parkinson’s patients so then the
numbers of the nurses dealing with the condition has increased greatly
both in the country of origin and globally. As outlined above the role
of the PDNS has been the subject of evaluation since its inception
however it must be noted that the literature fails to discuss the
ongoing preservation of the role and standards of care delivered by the
PDNS. It has been essential that each country has adapted and modified
the role to suit their unique demographics, health delivery mechanism
and culture. The metamorphosis of the role has been necessary but
potentially problematic hence it is vital that a re- evaluation of the
standards and services delivered by PDNS worldwide be carried out.
The
authors of this literature review share the initial passion of the
Parkinson’s Society to provide quality nursing care for people living
with Parkinson’s. It is imperative that the nursing fraternity ensures
standardization of nursing practice and quality care in both in
countries already familiar with the role and to streamline its
introduction in those countries contemplating its establishment.
References
- Parkinson, J. (1817). An essay on the shaking palsy. London: Sherwood, Heely, & Jones.
- Working Group on Parkinson’s Disease (formed by the World Health Organization May (1997)
Global Declaration on Parkinson’s Disease (2003).
- Jarman,
B. Hurwitz, B. Cook, A., Bajekal, M., Lee, A. (2002). Effects of
community based nurses specializing in Parkinson’s disease on health
outcomes and costs: randomized controlled trial.
British Medical Journal Vol. 324 1072-1075.
- American Parkinson Disease Association, 2003
-
The developing role of Parkinson's disease Nurse Specialist. (1999). Royal College of Nursing
- MacMahon, D, Thomas S, (1998). Practical approach to quality of life in Parkinson's disease: the nurse role. Neurology, 245 (1Supplement):S19-S22.
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