Explore how Parkinson’s disease (PD) diagnosis and care are managed across France, Germany, Spain, and the United Kingdom (UK), where AI-PROGNOSIS clinical partners are based. Each country offers unique perspectives on patient demographics, treatment protocols, and healthcare accessibility, shaping the journey of those living with PD. From national health system funding to specialised care approaches, these insights show the diverse strategies employed to support individuals affected by PD in different European contexts.

France

Patient Demographics

There are approximately 200,000 PD patients in France, with an average disease onset of 58 years (10% < 40 years old) and a ratio of male to female is 1.5:1. Annually, 25,000 new patients receive the diagnosis (Institute Pasteur, 2020).

How is care for PD delivered?

PD patients are principally followed by neurologists, both community-based neurologists and hospital-based ones, who frequently collaborate (one visit/year with each one of those physicians). Concomitantly, one epidemiological study in 2017 showed that only 33.5% of PD patients had received a neurology consultation over a one-year study period (Carriere et al., 2017), whereas a neurology consultation every 6 months is the recommended standard of care in the French national protocol for diagnosis and management (PNDS).

What does the journey to a PD diagnosis look like in France?

The diagnosis journey depends on whether a patient lives in cities or rural zones. For the latter, access to a specialist for diagnosis may require travel to a city, as the number of specialists may be limited. This can delay diagnosis and treatment. However, in the city, this is less of an issue.

What does the standard practice for PD care look like?

The standard practice of care for PD patients is two visits/year, including one in tertiary hospital. Access to PD nurses and educational therapies program is possible, however mainly in university hospitals.

Germany

Patient Demographics

There are up to 400,000 patients in Germany. PD in Germany is slightly more common in males (50.8%) than in females. As the incidence of PD increases with age, the prevalence of PD is below 1% in those aged 60 or below and over 3% in those aged 75 or above (Heinzel et al., 2018; Timpel et al., 2020).

How is care for PD delivered?

PD patients are principally followed by neurologists (both community-based neurologists and hospital-based ones). In the study by Timpel et al. (2020), mainly elderly and patients with more severe impairment, e.g., in nursing homes, did not see a neurologist for a year.

What does the journey to a PD diagnosis look like in Germany?

Most frequently, a primary care physician suspects PD and refers the patient to a neurologist. Sometimes, patients suspect the disease and ask their primary care physician to refer them to a neurologist. For public insurances, all referrals to neurologists (private practice and hospital) are from primary care physicians (“Hausarzt”).

What does the standard practice for PD care look like?

PD patients visit a neurologist every three months. Patients visit specialised a PD centre at least once a year. Most PwPs are seen in outpatient clinics. The most common reasons for patients to be referred are to receive either a second opinion or an advanced therapy for PD. PD nurses are only available in specialised hospital settings or in care research projects. Care networks (parkinsonnetze-deutschland.de) are being built to coordinate interdisciplinary care across disciplines and sectors, however these networks are currently not receiving a sufficient amount of funding.

Spain

Patient Demographics

The incidence rate (per 100,000 person-years) in the population aged 65 to 85 and over years is 186.8 for PD. Incidence rates increased with age in men but decreased beyond the age of 79 in women. Age-adjusted relative risk in men compared with women is 2.55 (95% CI) for PD (Benito-León J et al., 2004). The age and sex distribution are 62.6 ± 8.9 years old and 60.3% males, respectively, based on the COPPADIS study (Santos-García D et al., 2015).

How is care for PD delivered?

In general, patients with early-stage Parkinson's disease showing good progress and without complications are treated by a general neurologist with visits every six to nine months. In certain provinces in the South of Spain, where the number of neurologists is scarce, some patients are followed by internists before reaching a neurologist in later stages. Some older patients are handled by geriatricians. Experts in movement disorders typically handle more complex cases in advanced stages, those with a poorer prognosis from the outset, or atypical cases (such as very young patients or genetic cases). The Spanish Neurology Society has 3,500 members. The Movement Disorders Group has 400 members, mostly neurologists and some specialized nurses and physiotherapists.

What does the journey to a PD diagnosis look like in Spain?

In general, it is straightforward with accessibility. Patients seek help from the family practitioner who sends them to the neurologist if they suspect PD. Many times, patients see traumatologists, rheumatologists, and rehabilitation doctors before reaching the neurologist. Waiting lists in the healthcare system for an initial visit to a neurologist are usually around two to three months in the northern half of the country and four to six months in the southern provinces (Andalucia, Extremadura, Murcia). Follow-up appointments typically occur every six to nine months.

What does the standard practice for PD care look like?

Care depends on how stable the patient is and the stage of the disease. Generally, if everything is going well, patients usually have two visits per year. If there are many complications, they may have three or four visits per year. Based on clinical practice and interviews between collegues, clinicians working in the public sector have time to receive calls and emails from patients regarding changes in health status, although such direct contact is generally not possible within the public sector.

United Kingdom

Patient Demographics

A Parkinson's UK report of the Clinical Practice Research Datalink (CPRD) using primary care data from 2015 (Parkinson's UK, 2018) found that about 137,000 people were living with PD in the UK. The prevalence rate was 286.5 per 100,000 person-years. The incidence rate was 33.4 per 100,000 person-years, and each year there are about 17,300 new diagnoses of Parkinson's disease in people aged 45 years and above. The prevalence of PD increases with age, i.e., 4-5 per 100,000 people in people aged 30-39 years, compared to 1,696 per 100,000 people aged 80–84 years (equivalent to 1.7% of this age group). Prevalence rates almost double every five-year interval between 50–69 years for both men and women. The prevalence is higher in men than in women; prevalence rates for men aged 50–89 years were more than 1.5 times higher than rates for women in the same age group. This equates to 22 in every 10,000 women and 32 in every 10,000 men diagnosed with Parkinson's disease. By 2025, due to population growth and an increasingly ageing population, the estimated prevalence of Parkinson's disease is expected to increase by 23.2%, and the estimated yearly incidence is expected to increase by 23.9%.

How is care for PD delivered?

PwPs receive the best care within specialist clinical settings or movement disorder clinics. In the specialist clinic setting, there is an integrated approach when sharing best practice among different HCPs. A multidisciplinary team (MDT) consisting of different HCPs depending on clinic (neurologist, PD nurse specialist, physiotherapist, occupational therapist, speech and language therapist, dietitian) (Skelly R et al., 2012) are part of the integrated approach.

What does the journey to a PD diagnosis look like in the UK?

PD should only be diagnosed after a consultation with a specialist by referral from a primary care physician. Patients normally are referred to secondary care to see a movement disorder specialist, but this is subject to catchment area and location. A PD specialist will conduct a detailed medical history taking and examination to either rule out or confirm PD.

What does the standard practice for PD care look like?

The standard practice for PD care is three to four visits per year, including one in tertiary hospital. PD patients have access to PD nurses and educational therapies including multidisciplinary teams (mainly in university hospitals).