Move for change part I: a European survey evaluating the impact of the EPDA Charter for People with Parkinson's disease

Abstract

Background and purpose: The 1997 European Parkinson's Disease Association's (EPDA) Charter for People with Parkinson's disease (PD) outlines their rights in terms of standards of care. It states that all patients have the right to: be referred to a doctor with a special interest in PD; receive an accurate diagnosis; have access to support services; receive continuous care; and take part in managing their illness. Move for Change is a three-part series of pan-European patient surveys based on this Charter.

Methods: This first survey, consisting of 23 questions, focusing on the initial two points of the Charter, was administered online through the EPDA and affiliated patient associations' Web sites. Of 2149 forms received from 35 European countries, 2068 (96.2%) were analyzed, with the remainder excluded, mainly due to incomplete responses.

Results: The majority of patients were diagnosed within 2 years from the onset of first symptoms (82.7%; range, <1 year to ≥5 years). In relation to diagnosis delivery, 45.3% of patients stated that it was 'poor' or 'very poor'. During the 2 years following diagnosis, 43.8% of respondents had never seen a PD specialist. Care was usually overseen by generically active neurologists (92.5%) or family doctors (81.0%), with considerable overlap between the two.

Conclusions: These data highlight challenges that patients with PD face during the period of diagnosis, despite introduction of the Charter. These findings can assist healthcare professionals and policy makers in improving the level of care for patients and their families across Europe, and we offer suggestions about how this can be achieved.

Figure 1

(a) Time to diagnosis after the onset of first symptoms (n = 2068). (b) Type of physician providing the diagnosis of PD (n = 2068).

Figure 2

(a) Patients’ response to how their diagnosis of Parkinson’s Disease (PD) was given (n = 2068). (b) Frequency of visit to neurologist/PD specialist in the 2 years following diagnosis (n = 2068).

Figure 3

(a) Information provided by the doctor about Parkinson’s following a diagnosis pre-1996 (n = 241) and post-1996 (n = 1777). (b) Helpfulness of the information provided by the doctor following a diagnosis pre-1996 (n = 241) and post-1996 (n = 1777). (c) Helpfulness of the information provided by the national organization for participants with a diagnosis pre-1996 (n = 241) and post-1996 (n = 1777). (d) Number of years taken to diagnose the symptoms as Parkinson’s in participants who received a diagnosis pre-1996 (n = 241) and post-1996 (n = 1777).

Figure 4

(a) Number of times a family practitioner/GP was seen in the 2 years following a diagnosis pre-1996 (n = 241) and post-1996 (n = 1777). (b) Number of times a family PD specialist was seen in the 2 years following a diagnosis pre-1996 (n = 241) and post-1996 (n = 1777).