Consensus on the Definition of Advanced Parkinson’s Disease: A Neurologists-Based Delphi Study (CEPA Study)

Abstract

To date, no consensus exists on the key factors for diagnosing advanced Parkinson disease (APD). To obtain consensus on the definition of APD, we performed a prospective, multicenter, Spanish nationwide, 3-round Delphi study (CEPA study). An ad hoc questionnaire was designed with 33 questions concerning the relevance of several clinical features for APD diagnosis. In the first-round, 240 neurologists of the Spanish Movement Disorders Group participated in the study. The results obtained were incorporated into the questionnaire and both, results and questionnaire, were sent out to and fulfilled by 26 experts in Movement Disorders. Review of results from the second-round led to a classification of symptoms as indicative of “definitive,” “probable,” and “possible” APD. This classification was confirmed by 149 previous participating neurologists in a third-round, where 92% completely or very much agreed with the classification. Definitive symptoms of APD included disability requiring help for the activities of daily living, presence of motor fluctuations with limitations to perform basic activities of daily living without help, severe dysphagia, recurrent falls, and dementia. These results will help neurologists to identify some key factors in APD diagnosis, thus allowing users to categorize the patients for a homogeneous recognition of this condition.

Developing consensus among movement disorder specialists on clinical indicators for identification and management of advanced Parkinson’s disease: a multi-country Delphi-panel approach

“…In a study by Luquin et al 16 defining patients with APD MS related to dopaminergic treatment, such as presence of motor fluctuations, functional limitations, such as patient requiring help, or experiencing limitations with daily activities were considered sufficient or absolute determinants of APD. Other motor limitations, such as moderate-to-severe dysphagia or moderate and/or severe dysarthria and NMS, such as dementia and hallucinations without insight, were also considered determinants of APD 16 . The panelists in this study determined that treatment with oral levodopa tablets five or more times per day indicates suspected APD.…”

“…Consensus methods have been used previously in PD in the NAVIGATE-PD study 4 and the Spanish CEPA study 16 , both of which used a modified approach to generate consensus. For this study, the modified Delphi process consisted of four stages (Figure 1).…”

“…Gaps in clinical knowledge exist about when the various treatments should be initiated and what therapies are most suitable as the disease progresses to advanced stage 8,13,14 . One of the challenges in appropriate timing to optimize therapies for symptom control is the absence of a biomarker, diagnostic test, or gold standard index resulting in no clear consensus on how to define the stage of advanced PD 11,15,16 .…”

“…Identifying key indicators of patients transitioning to APD or with suspected APD is important for timely referral and intervention 4,8,[22][23][24] . Our study adds to recent emerging literature which aims to generate consensus around identifying key symptoms of APD, and identifying indicators of when oral/transdermal medications are no longer effectively controlling symptoms to aid in practical management of the APD patients in clinical practice 4,16 .…”

5-2-1 Criteria: A Simple Screening Tool for Identifying Advanced PD Patients Who Need an Optimization of Parkinson’s Treatment

“…Indeed, changes in QoL has been chosen as the principal variable in some studies with PD patients selected for receiving a second line therapy [20,21] and the use of PDQ-39 in routine care for PD has been suggested [22]. However, although some criteria have been proposed with the aim to define advanced PD [23][24][25], in many cases the criteria are not useful in daily clinical practice because their application is time-consuming and also because the concept of PD is too broad [26]. erefore, a quick screening tool that identifies which PD patients are worse and need optimized treatment, including possibly a second line therapy, would be ideal.…”