Using PROMs during routine medical consultations: The perspectives of people with Parkinson's disease and their health professionals.

Background: The use of patient-reported outcomes measures (PROMs), such as quality of life or symptoms like pain or fatigue, is increasingly embraced within patient-centred care and shared decision making.

Objectives: To investigate: (a) how patients and health professionals think about using PROMs during routine medical consultations; (b) for which purpose(s), patients and health professionals want to use PROMs during those consultations; and (c) how patients interpret PROMs information presented in various formats. People with Parkinson's disease and their health professionals served as case example.

The impact and utility of encounter patient decision aids: Systematic review, meta-analysis and narrative synthesis.

Objective: To determine the effect of encounter patient decision aids (PDAs) as evaluated in randomized controlled trials (RCTs) and conduct a narrative synthesis of non-randomized studies assessing feasibility, utility and their integration into clinical workflows.

Methods: Databases were systematically searched for RCTs of encounter PDAs to enable the conduct of a meta-analysis. We used a framework analysis approach to conduct a narrative synthesis of non-randomized studies.

Implementation of Patient Engagement in the Netherlands: A Stimulating Environment within a Large Academic Medical Centre.

Patients are the official third party of the Dutch healthcare system, apart from healthcare providers and insurers. Radboud university medical center (Radboudumc) is a regional centre for specialized secondary care in the Netherlands. Here innovation is recognized as a decisive factor when it comes to the implementation of patient engagement.

Developing quality criteria for patient-directed knowledge tools related to clinical practice guidelines. A development and consensus study.

Background: Patient-directed knowledge tools such as patient versions of guidelines and patient decision aids are increasingly developed to facilitate shared decision making. In this paper, we report how consensus was reached within the Netherlands on quality criteria for development, content and governance of these tools.

Method: A 12-month development and consensus study.

The Voice of the Parkinson Customer.

Background And Objectives: To improve the care for patients with chronic neurological conditions like Parkinson's disease, identifying the core needs of patients is crucial. In this article, we present the Voice of the Customer approach (originally developed in the field of industry to probe the clients' needs), a novel methodology to identify these needs.

Methods: A group of 12 discussants carried out in depth interviews to patients (n = 20), relatives (n = 12) and healthcare professionals (n = 11).

Improving shared decision-making in advanced Parkinson's disease: protocol of a mixed methods feasibility study.

Background: In advanced stages of Parkinson's disease (PD), patients and neurologists regularly face complex treatment decisions. Shared decision-making (SDM) can support the process where evidence, the clinician's expertise and the patient's preferences jointly contribute to reach an optimal decision. Here, we describe the rationale of our feasibility study protocol.

Building a patient-centered and interprofessional training program with patients, students and care professionals: study protocol of a participatory design and evaluation study.

Background: A common approach to enhance patient-centered care is training care professionals. Additional training of patients has been shown to significantly improve patient-centeredness of care. In this participatory design and evaluation study, patient education and medical education will be combined by co-creating a patient-centered and interprofessional training program, wherein patients, students and care professionals learn together to improve patient-centeredness of care.

Automated Quality Control for Sensor Based Symptom Measurement Performed Outside the Lab.

The use of wearable sensing technology for objective, non-invasive and remote clinimetric testing of symptoms has considerable potential. However, the accuracy achievable with such technology is highly reliant on separating the useful from irrelevant sensor data. Monitoring patient symptoms using digital sensors outside of controlled, clinical lab settings creates a variety of practical challenges, such as recording unexpected user behaviors.

Impact of motor fluctuations on real-life gait in Parkinson's patients.

Background: People with PD (PWP) have an increased risk of becoming inactive. Wearable sensors can provide insights into daily physical activity and walking patterns.

Research Questions: (1) Is the severity of motor fluctuations associated with sensor-derived average daily walking quantity? (2) Is the severity of motor fluctuations associated with the amount of change in sensor-derived walking quantity after levodopa intake?

Methods: 304 Dutch PWP from the Parkinson@Home study were included.

Exploring Dutch surgeons' views on volume-based policies: a qualitative interview study.

Objective In many countries, the evidence for volume-outcome associations in surgery has been transferred into policy. Despite the large body of research that exists on the topic, qualitative studies aimed at surgeons' views on, and experiences with, these volume-based policies are lacking. We interviewed Dutch surgeons to gain more insight into the implications of volume-outcome policies for daily clinical practice, as input for effective surgical quality improvement.

Assessment of goals and priorities in patients with a chronic condition: a secondary quantitative analysis of determinants across 11 countries.

Objective: To assess the impact of patient characteristics, patient-professional engagement, communication and context on the probability that healthcare professionals will discuss goals or priorities with older patients.

Design: Secondary analysis of cross-sectional data from the 2014 Commonwealth Fund International Health Policy Survey of Older Adults.

Setting: 11 western countries.

Feasibility of large-scale deployment of multiple wearable sensors in Parkinson's disease.

Wearable devices can capture objective day-to-day data about Parkinson's Disease (PD). This study aims to assess the feasibility of implementing wearable technology to collect data from multiple sensors during the daily lives of PD patients. The Parkinson@home study is an observational, two-cohort (North America, NAM; The Netherlands, NL) study.

A three-goal model for patients with multimorbidity: A qualitative approach.

Background: To meet the challenge of multimorbidity in decision making, a switch from a disease-oriented to a goal-oriented approach could be beneficial for patients and clinicians. More insight about the concept and the implementation of this approach in clinical practice is needed.

Objective: This study aimed to develop conceptual descriptions of goal-oriented care by examining the perspectives of general practitioners (GPs) and clinical geriatricians (CGs), and how the concept relates to collaborative communication and shared decision making with elderly patients with multimorbidity.

Evaluation of minimum volume standards for surgery in the Netherlands (2003-2017): A successful policy?

Purpose: To evaluate the introduction and implications of minimum volume standards for surgery in Dutch health care from 2003 to 2017 and formulate policy lessons for other countries.

Setting: Dutch health care.

Principal Findings: Three eras were identified, representing a trust-and-control cycle in keeping with changing roles of different stakeholders in Dutch context.

Shared agenda making for quality improvement; towards more synergy in maternity care.

Objectives: Professionals in maternity care have started working in a network approach. To further enhance the efficacy of this multidisciplinary maternity network, the identification of priorities for improvement is warranted. The aim of this study was to create key recommendations for the improvement agenda, in co-production with patients and professionals.

Collaborative goal setting with elderly patients with chronic disease or multimorbidity: a systematic review.

Background: It is challenging to use shared decision-making with patients who have a chronic health condition or, especially, multimorbidity. A patient-goal-oriented approach can thus be beneficial. This study aims to identify and evaluate studies on the effects of interventions that support collaborative goal setting or health priority setting compared to usual care for elderly people with a chronic health condition or multimorbidity.

Involving Medical Students in Providing Patient Education for Real Patients: A Scoping Review.

Background: Studies suggest that involving students in patient education can contribute to the quality of care and medical education. Interventions and outcomes in this field, however, have not yet been systematically reviewed. The authors examined the scientific literature for studies on interventions and outcomes of student-provided patient education.

Freezing of gait and fall detection in Parkinson's disease using wearable sensors: a systematic review.

Despite the large number of studies that have investigated the use of wearable sensors to detect gait disturbances such as Freezing of gait (FOG) and falls, there is little consensus regarding appropriate methodologies for how to optimally apply such devices. Here, an overview of the use of wearable systems to assess FOG and falls in Parkinson's disease (PD) and validation performance is presented. A systematic search in the PubMed and Web of Science databases was performed using a group of concept key words.

Use of social network analysis in maternity care to identify the profession most suited for case manager role.

Objective: To improve Dutch maternity care, professionals start working in interdisciplinary patient-centred networks, which includes the patients as a member. The introduction of the case manager is expected to work positively on both the individual and the network level. However, case management is new in Dutch maternity care.

Medicalisation and Overdiagnosis: What Society Does to Medicine.

The concept of overdiagnosis is a dominant topic in medical literature and discussions. In research that targets overdiagnosis, medicalisation is often presented as the societal and individual burden of unnecessary medical expansion. In this way, the focus lies on the influence of medicine on society, neglecting the possible influence of society on medicine.

Large-Scale Wearable Sensor Deployment in Parkinson's Patients: The Parkinson@Home Study Protocol.

Background: Long-term management of Parkinson's disease does not reach its full potential because we lack knowledge about individual variations in clinical presentation and disease progression. Continuous and longitudinal assessments in real-life (ie, within the patients' own home environment) might fill this knowledge gap.

Objective: The primary aim of the Parkinson@Home study is to evaluate the feasibility and compliance of using multiple wearable sensors to collect clinically relevant data.

Moving Parkinson care to the home.

In many ways, the care of individuals with Parkinson disease does not meet their needs. Despite the documented benefits of receiving care from clinicians with Parkinson disease expertise, many patients (if not most) do not. Moreover, current care models frequently require older individuals with impaired mobility, cognition, and driving ability to be driven by overburdened caregivers to large, complex urban medical centers.

Choosing an Advanced Therapy in Parkinson's Disease; is it an Evidence-Based Decision in Current Practice?

Background: In advanced Parkinson's disease (PD), neurologists and patients face a complex decision for an advanced therapy. When choosing a treatment, the best available evidence should be combined with the professional's expertise and the patient's preferences.

Objective: The objective of this study was to explore current decision-making in advanced PD.

A grounded theory study on the influence of sleep on Parkinson's symptoms.

Background: Upon awaking, many Parkinson's patients experience an improved mobility, a phenomenon known as 'sleep benefit'. Despite the potential clinical relevance, no objective correlates of sleep benefit exist. The discrepancy between the patients' subjective experience of improvement in absence of objective changes is striking, and raises questions about the nature of sleep benefit.