Access to End-of Life Parkinson's Disease Patients Through Patient-Centered Integrated Healthcare

Abstract

Background: Palliative care in Parkinson's Disease (PD) patients considerably differs from palliative care in oncology patients. Integrated care models are a concept to support patients and improve management of PD symptoms. However, it is not known if the access to PD patients at the end of life can be achieved through integrated care models.Aim: To analyze an integrated model of care for PD patients with the aim to identify if this integrated model of care has access to PD patients at the end of life.Material and Methods: The Cologne Parkinson's network was designed as a randomized, controlled prospective clinical trial in order to increase quality of life of PD patients. This innovative model of care integrated a neurologist in private practice, a movement disorder specialist of the University Hospital and a PD nurse. Mortality rates of PD patients during the study period of 6 months were registered and compared with mortality rates of the general population of Germany according to the Federal Statistical Office of Germany. The retrospective post-hoc analysis was conducted after completion of the initial study at the University Hospital and neurologists' practices in the greater area of Cologne, Germany. Eligible patients had a diagnosis of idiopathic PD and were aged 25–85 years.Results: Parkinson's Disease patients in this trial had an even slightly lower mortality rate as the general population (1.66 v. 2.1%). These results are contradictory and speak for a substantial proportion of late-stage disease patients, who have not been adequately included in this study or have been better treated within this trial. The mean disease duration of patients in this study was around 6 years which resembles the lower range of the mean disease duration at death of PD patients in general.Conclusions: The results of our post-hoc analysis show, that accessing PD patients in the last phase of their disease is extremely difficult and nearly fails in spite of an integrated care approach. Reasons for poor access and loss of follow-up at the end of life have to be identified and care models for PD patients until the end of life should be developed urgently.

Integrated Care in Parkinson's Disease: A Systematic Review and Meta‐Analysis

“…We included 48 records in the qualitative review, from which 37 studies met the inclusion and exclusion criteria. The study characteristics of 8 randomized, controlled trials (RCTs) included in the quantitative meta‐analysis and 19 other experimental studies included in the systematic review are presented in Table . The remaining 10 articles included in our systematic review were nonexperimental (ie, review articles or descriptions of care models) and are detailed separately in Supplementary Table 1 …”

“…2 for geographical map), although large parts of the world remained underrepresented. Table presents the characteristics and results of all studies, including the RCTs included in the meta‐analysis, as well as other studies included in the systematic review (nonrandomized, controlled trials, pretest/posttest designs, observational cohort studies, and retrospective chart reviews) . In the online supplementary materials, Supplementary Table 1 presents articles with detailed descriptions of proposed care models and other related reviews of care models specific to integrated care in PD .…”

Building a Parkinson-Network–Experiences from Germany

“…Generally, the establishment of networks remains a great challenge in Germany due to inhomogeneous regional conditions and the strict regulation and separation of the individual sectors in the German health care system [ 32 ]. Overall, German authors agree that the healthcare delivery system for PD patients must change and that more Parkinson networks are needed in the future in order to supply all PD patients in Germany [ 13 , 16 , 22 , 33 ]. Establishing recommendations for building a Parkinson network that are generally agreed upon and specifically tailored to the German context may be a first step towards this direction.…”

Reliability and Validity of the Korean Short-form Eight-item Parkinson’s Disease Questionnaire (PDQ-8)

“…This result indicates that the independent Korean PDQ-8 has good convergent validity. [3,11,12]. The independent PDQ-8SI was also correlated with cognitive function based on the MMSE [15] and MoCA scores [16], and dementia stage based on the GDS [17] and CDR [18].…”

“…Importance of HRQoL assessment has increased to provide life-extending treatment and supportive care for PD patients and their families [11]. Thus, reliable and valid HRQoL measures are essential for understanding the multifaceted effects of PD and are crucial for promoting patient-centered integrated healthcare throughout the course of PD [12,13].…”