Clinical and disability features of advanced, long-term and/or end-stage Parkinson’s disease (PD)56–60
| Classification | Symptom | Prevalence | Reference: study type, sample |
| Motor | Dyskinesia | 94% at 15 years*; 100% at 20 years** | *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors |
| End of dose failure | 96% at 15 years*; 100% at 20 years** | *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors | |
| Dystonia | 56% at 15 years* | *Hely et al 56: prospective, 52 survivors | |
| Gait disturbances | 49 to 83% at ≥20 years# | #Cilia et al 58: cross sectional, 401 patients | |
| Postural instability | 47 to 83% at ≥20 years# | #Cilia et al 58: cross sectional, 401 patients | |
| Psychiatric and cognitive | Mild cognitive impairment | 36% at 15 years* | *Hely et al 56: prospective, 52 survivors |
| Dementia | 48% at 15 years*; 83% at 20 years**; 17%–42% at ≥20 years# | Coelho and Ferreira59: review; *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors; #Cilia et al 58: cross sectional, 401 patients | |
| Psychosis | 6% at 15 years*; 22%–42% at ≥20 years# | *Hely et al 56: prospective, 52 survivors; #Cilia et al 58: cross sectional, 401 patients | |
| Visual hallucinations | 50% (formed) at 15 years*; 21% (treatment adjusted) at 15 years*; 74% at 20 years** | Coelho and Ferreira59: review; *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors | |
| Depression | 46% (mild) at 15 years*; 7% (definite) at 15 years*; 70% at 20 years**; 10%–25% at ≥20 years (depression and apathy)# | *Hely et al 56: prospective, 41 survivors who took the GDS; **Hely et al 57: prospective, 10 survivors who took the GDS; #Cilia et al 58 : cross sectional, 401 patients | |
| Agitation | 29% at 15 years* | *Hely et al 56: prospective, 52 survivors | |
| Anxiety, often associated with irritability | 66% of patients with PD with motor fluctuations@ | *Lokk and Delbari60: review | |
| Nightmares | 44% at 15 years* | *Hely et al 56: prospective, 52 survivors | |
| Marked paranoia and violence | 2% at 15 years*; 3% at 20 years** | *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors | |
| Pathological gambling | 2% at 15 years*; 7% at 10 years** | *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors | |
| Suicide | 3% at 20 years** | **Hely et al 57: prospective, 30 survivors | |
| Hypersexuality | 3% at 20 years** | **Hely et al 57: prospective, 30 survivors | |
| Autonomic failure | Symptomatic postural hypotension | 35% at 15 years*; 48% at 20 years**; 13%–19% at ≥20 years# | *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors; #Cilia et al 58: cross sectional, 401 patients |
| Urinary incontinence | 41% at 15 years*; 71% at 20 years** | *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors | |
| Faecal incontinence | 17% at 20 years** | **Hely et al 57: prospective, 30 survivors | |
| Constipation | 40% at 20 years** | **Hely et al 57: prospective, 30 survivors | |
| Pain | 50% of patients with PD@ | @Lokk and Delbari60: review | |
| Activities of daily living | Dysphagia | 50% at 15 years*; 48% at 20 years**; 9% to 25% at ≥20 years# | *Hely et al 56: prospective, 52 survivors; #Cilia et al 58: cross sectional, 401 patients |
| Speech impediment | 27% at 15 years*; 81% at 20 years**; 51% to 68% at ≥20 years# | *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors; #Cilia et al 58: cross sectional, 401 patients | |
| Daytime sleepiness | 79% at 15 years*; 70% at 20 years** | *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors | |
| Sleep disturbance | 60% of patients with PD@ | @Lokk and Delbari60: review | |
| Falls | 81% at 15 years*; 87% at 20 years**; 20%–37% at ≥20 years# | Coelho and Ferreira59: review; *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors; #Cilia et al 58: cross sectional, 401 patients | |
| Freezing | 81% at 15 years*; 81% at 20 years**; 43%–55% at ≥20 years# | *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors; #Cilia et al 58: cross sectional, 401 patients | |
| Start hesitation | 90% at 15 years* | *Hely et al 56: prospective, 52 survivors | |
| Fractures | 23% at 15 years*; 35% at 20 years** | *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors | |
| Living arrangement | Residential home admission | 40% at 15 years*; 48% at 20 years** | Coelho and Ferreira59: review; *Hely et al 56: prospective, 52 survivors; **Hely et al 57: prospective, 30 survivors |
| Inability to live alone | 58% at 15 years* | *Hely et al 56: prospective, 52 survivors | |
| Mortality | Death | 60% by 15 years*; 74% by 20 years** | Coelho and Ferreira59: review; *Hely et al 56: prospective, 136 people originally recruited; **Hely et al 57: prospective, 136 people originally recruited |
The studies of Hely et al 56 and Hely et al 57 followed people with PD who are part of a 5-year trial comparing low-dose bromocriptine with low-dose levodopa–carbidopa. The ‘at 15 years’ statistics reported by Hely et al 56 indicate prevalence of certain clinical and disability features 15 years from onset of treatment and approximately 17 years from onset of symptoms indicative of PD.
GDS, Geriatric Depression Scale.