Delivering healthcare to people living with Parkinson’s disease (PD) may be challenging in face of differentiated care needs during a PD journey and a growing complexity. In this regard, integrative care models may foster flexible solutions on patients’ care needs whereas Parkinson Nurses (PN) may be pivotal facilitators. However, at present hardly any training opportunities tailored to the care priorities of PD-patients are to be found for nurses. Following a conceptual approach, this article aims at setting a framework for training PN by reviewing existing literature on care priorities for PD. As a result, six prerequisites were formulated concerning a framework for training PN. The proposed training framework consist of three modules covering topics of PD: (i) comprehensive care, (ii) self-management support and (iii) health coaching. A fourth module on telemedicine may be added if applicable. The framework streamlines important theoretical concepts of professional PD management and may enable the development of novel, personalized care approaches.

Background: Quality of life (QoL) of persons with Parkinson’s disease (PD) is diminished by (non-)motor symptoms, that require personalized care. Parkinson Nurses (PN) may be pivotal promoting tailored care offerings. This systematic review and meta-analysis investigates PD care models and aims at furnishing current concepts of PN to offer personalized care. Objective: The purpose of this study is to identify the various roles and functions that PN may hold for personalized PD care. Methods: We performed a systematic literature review, utilizing: PubMed, Web of Science, The Cochrane Library, and PsycINFO. The review qualitatively evaluated articles, which described personalized care models involving PNs and was guided by the personalized care management model. A meta-analysis compared patient-reported QoL (quantified using the 39-item Parkinson’s Disease Questionnaire) between personalized care interventions involving PN versus standard care with. Results: Twenty-seven publications were identified, including six randomized, controlled trials ascertaining with health related QoL (n = 1830 PwPs). The qualitative evaluation revealed that PN contribute to all aspects of personalized care. The meta-analysis showed no improved QoL in personalized care models compared to standard care, thought a great heterogeneity among study design and interventions was outlined (Standardized Mean Difference = –0.8935; 95% Confidence Interval, –2.1177 to 0.3307; z = –1.43, p = 0.1526). Conclusion: PN fulfil important functions in personalized PD care. For the future, a clear role definition will be necessary to adjust training for PN across healthcare systems and care settings but especially to realize their full potential for PD care.

Integrated care models may help in designing care for Parkinson’s disease (PD) that is more efficient and patient-centered. However, in order to implement such models successfully, it is important to design these models around patients’ needs and preferences. Personality traits and coping styles play a well-studied important role in patients’ disease perception and their utilization of medical and social services to cope with their disease. There is evidence that coping styles remain largely unchanged over the course of PD; coping styles are defined in the early stages of life and extend over the entire lifespan of the patient. Therefore, it seems necessary to consider aspects of the personality traits and coping styles of PD patients in the development and implementation of care models. We postulate that by taking patients’ personality traits and coping styles into account, care models for PD can be designed in a more individualized and, thus, more effective way. This paper, structured in three main sections, attempts to structure the uptake of patients’ coping styles in the co-design of integrated care models. However, further studies are needed to better develop tailored care concepts to the needs of people living with PD and their individual coping styles.

(1) Background: Parkinson nurses (PN) take over important functions in the telemedical care of person’s with Parkinson’s disease (PwPs). This requires special competencies that have so far been largely unexplored. The aim of the article is to identify competencies of PN operating in a personalized care model. (2) Methods: This study employed a qualitative approach. Based on the competency framework for telenursing, PN were asked about their competencies using a qualitative online survey. (3) Results: The results show that PN need competencies on a personal and organizational level, as well as in the relationship with PwPs. PN have developed these skills through professional exchange, training, and personal experience. In addition, both hindering and beneficial factors for the development of competencies could be identified. (4) Conclusions: Competency development for telemedical care is complex and must be designed and promoted in a targeted manner.

Introduction: The complexity of Parkinson’s disease (PD) symptoms and the necessity for individualised, multidisciplinary and digital health technology-based care are widely acknowledged; however, access to specialist care remains limited, particularly in rural areas. Current healthcare systems are frequently ill-equipped to deliver timely, personalised interventions. In response to these challenges, the ParkProReakt project aims to enhance PD care through a proactive, technology-enabled, multidisciplinary approach designed to improve patient health-related quality of life (HRQoL) and alleviate caregiver burden. Methods and analysis: A randomised controlled trial will assess the efficacy and cost-effectiveness of ParkProReakt—a proactive, multidisciplinary, digitally supported care model for community-dwelling people with Parkinson’s disease (PwPD)—compared with standard care. We will recruit a total of 292 PwPD and their informal caregivers living in two diverse regions in Germany. The primary outcome measure will be patients’ HRQoL as measured by the Parkinson’s Disease Questionnaire, obtained at baseline, monthly and at completion of participation. Secondary outcomes comprise patients’ subjective well-being, incidence or change of long-term care needs, global cognition and disease progression, utilisation of healthcare services, including hospitalisations, caregiver burden and healthcare costs. Statistical analysis will include t-tests for HRQoL changes, general linear model for confounders and multilevel models for centre effects. Secondary outcomes and cost-effectiveness (incremental cost-effectiveness ratio) will be analysed similarly using R and SPSS. Ethics and dissemination: The study protocol has been approved by the Ethics Committees of the Medical Associations of Hesse and Hamburg. The results of our study will be reported to the funding body and disseminated through scientific publications and presentations at national and international conferences. Trial registration number: This study was registered with the German Registry for Clinical Studies (DRKS) in both German and English; number: DRKS00031092.

Introduction Quality of life (QoL) is of paramount importance as an outcome to monitor and guide therapies for people with Parkinson’s disease (PwPD). In particular, due to the heterogeneous symptoms that PwPD may experience during their disease course, QoL can deteriorate not only in patients but also in their caregivers, with a variety of psychosocial consequences. However, there is a lack of longitudinal studies that explore how QoL evolves over time and what factors are significant. Furthermore, holistic approaches that consider bio-psycho-social determinants are rare. In the worst cases, these gaps can lead to suboptimal care and therefore unmet needs for patients and their caregivers, resulting in unnecessary symptom burden and increased healthcare costs for society. Methods and analysis This prospective, longitudinal study will follow 1000 PwPD along with their caregivers for 20 years, with up to 40 semi-annual assessments. Patient data and sample collection will include clinical assessments, self-reported outcome measures focusing on QoL, biospecimen collection and MRI. Caregiver burden will be systematically assessed through self-administered questionnaires. The use of digitised surveys will allow efficient data collection and convenient assessment at home. Our primary objective is to attain a holistic understanding of QoL in PwPD and establish a tool to measure it. The secondary objective is to explore the psycho-social and biological variables associated with QoL of patients and caregivers over the progression of the disease. This will provide key information for diagnostic and prognostic prediction, therapeutic patient stratification and adaptation of therapy in the future. Ethics and dissemination The study was approved by the local ethics committee of the University Hospital of Marburg (study number: 209/19). The results will be disseminated by means of publication in peer-reviewed journals, international conference contributions, annual patient meetings and a dedicated website. Trial registration number German Clinical Trials Register (DRKS00023598).