Parkinson’s DiseaseDiagnosis, Management and impact

Pete Smith

PDNS

Northampton

Tel 01604 678120

peter.smith@northants.nhs.ukDate April 2007

History of PD

• First described by James Parkinson in 1817 (1)

• -”Involuntary tremulous motion”• -”A propensity to bend forwards”• -”The senses and intellect are intact”• 40 years later Charcot named it Parkinson’s Disease

Definition

• Chronic, progressive, neurological degenerative disease

• -”Multi-system neurological disorder which affects cognitive processes, emotion and autonomic function”(2)

• Greater emphasis on non-motor symptoms

Prevalence

• 2 cases per 1000 (3)

• Approx 120,000 people with PD in UK• Almost a quarter are in hospital or residential care• Almost a third in community requiring help• Nearly half are independent, living in community• Most cases in 60 – 70yr olds • Young onset=below 50yrs

Causes

• In most cases cause is unknown• More common as we age but not solely responsible• Genetic causes• Environmental (More common in rural areas) • Possibly due to- Pesticides, virus, heavy metals,

solvents, head trauma..

Signs and Symptoms

• Tremor (25% of Patients don’t shake)• Rigidity• Bradykinesia• Postural instability• Unilateral presentation

Diagnosis of PD

• Clinical diagnosis• UK PDS Brain Bank Diagnostic Criteria (4)

• Bradykinesia plus one of the following- resting tremor,rigidity or postural instability

• SPECT and DACT scans • Diagnosis by a specialist (prefer pts untreated)• Insidious onset, initially unilateral symptoms• 25% Wrongly diagnosed (4)

Differential Diagnosis

• Parkinsonism• Parkinson’s Plus Syndromes• Multi-System Atrophy• Progressive-Supranuclear palsy• Lewy Body Dementia• Drug induced Parkinsonism• Essential tremor• Vascular Parkinsonism• Cortico-basal degeneration

Impact on Patient (Newly Diagnosed)

• Prognosis• Employment prospects• Driving• Financial support/ access to benefits• Risk of inheritance• Relationship issues• Neuro-psychiatric (anxiety and depression)• Fear of treatment/side effects

Impact on Patient & Carers, Advanced PD

• Unable to maintain independence• Cognitive decline • Hallucinations, psychosis paranoia• Agitation• Side effects of treatment• Motor complications• Dyskinesia• Falls• Immobility• Pain• Communication difficulties• Swallowing problems/weight loss• Unable to maintain a safe environment• Fear of hospitalisation and nursing homes• Carer strain

Impact on Society

• Cost to NHS £2,298 (£-1998) per pt per year (5)

• Total cost per year per pt inc social services £5,993 (£-1998) (5)

• Total cost per year for UK £599,300,000 for 100,000 pts (5)

• Cost increases with age and severity• PD Frequent cause of falls and fractures leading to

hospital admission and sometimes death

Management

• Diagnosis• All suspected cases should be referred to a neurologist

untreated• Diagnosis is usually confirmed based on clinical

examination• In younger onset screen for tumours etc• If diagnosis uncertain consider DACT scan• Discuss treatment options with patient• Commence treatment based on quality of life

Management (cont)

• Diagnosis• Home assessment by PDNS• Medicine information (not treated during this phase)• Provide information and advice re PD ie driving & benefits etc• Help address employment issues• Counsel pt and family• Refer to neuro-physiotherapy for exercise programme• Referral to other members of MDT if appropriate• Provide contact number of PDNS helpline• Put in touch with PD Society or fellow pts with PD if appropriate• Follow up via consultant and PD Nurse clinic

Management

• Maintainence• Simple problem free drug regime (honeymoon period)• Monitoring of condition• Education of patient on drug use, inc timing and side effects etc• Involve pt in decision making• Liasion between GP, Pt and Hosp Consultant etc • Medicine Management (Nurse Prescriber)• Referrals to MDT as required• Out patient appt or ‘telephone clinic’ if required• Many patients can get on with life during this period with few

problems or concerns

Management

• Complex• Patients often need several types of drugs and experience

troublesome side effects.- Review Medication• Problematic Co-morbidities• Management of motor complications• Management of dyskinesia (amantadine, surgery)• Management of neuro-psychiatric complications • Apomorphine therapy• Greater emphasis on MDT- Adaptations, cares etc• Consider day care (TULIP Centre Northampton)

Management

• Complex (cont)• Fall prevention workshops• Respite care?• Regular out-patient reviews (home visits if unable to

attend) • Counseling and support of Pt and carers • Advanced care planning inc timing of intervention and

side effects management etc• Involve pt in decision making

Management

• Palliative• Inability to tolerate adequate dopaminergic therapy• Unsuitable for surgery• Advanced co-morbidity (6)

• Shift of emphasis from “high tech” pharmacological approach to a now shortened life span

• Cognitive decline is a marker of poor prognosis• Does not equate with the end of life• Mean duration of PD 14.6 yrs – palliative phase 2.2yrs

(7)

Management

• Palliative• Aim for quality of a now shortened life• Withdrawal of drugs• Neuro-psychiatric complications often lead to residential/nursing

care• Dementia care• Support and advice to carers• Increased mortality once in care homes (8)

• Skills of palliative care team become crucial• Increased MDT involvement• Prevention and management complications

Cause of Death General Population

Source Information (9)

34%

33%

25%

8%Frailty&Dementia

Organ Failure

Cancer

Other

Cause of Death General PopulationTrajectories

Source Information (9)

References

(1) Parkinson J, 1818: An Essay on Shaking Palsy, Macmillan&PDS. London(2) Playfer J, et al. (2001) Parkinson’s Disease in the older Patient. Arnold. London(3) Clough C, et al. (2003) Parkinson’s Disease, Health Press Ltd. Oxford(4) Quinn N, (1997) Parkinson’s Disease Clinical Features. Balliere’s Clinical

Neurology: 6 (1). 1-16(5) National Collaborating Centre for Chronic Conditions. Parkinson’s disease: national

clinical guideline for diagnosis and management in primary and secondary care. London: Royal College of Physicians, 2006.

(6) MacMahon D.G& Thomas, S (1998) J Neurology.245 (suppl 1):S19-22(7) MacMahon D.G, et al (1999) Validation of Pathways Paradigm for the Management

of PD. Parkinsonism and Related Disorders.1999:5(S53)(8) Goetz CG, & Stebbins GT. (1993) Risk Factors for Nursing Home Placement in

Advanced PD. Neurology. 1993:43:2227-2229 (9) Lynn et al (2004) Palliative Care the Solid Facts. WHO Europe www.euro.who.int

Recommended Readinghttp://www.parkinsons.org.uk/PDF/PDAwarePrimaryCareSept03.pdf

Nice Guidelines ( quick guide) June 2006