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Background: An innovative, integrative care model for people with Parkinson (PRIME Parkinson) has gradually been implemented in a selected region of the Netherlands since 2021. A prospective evaluation of this model (PRIME-NL study) was initiated in parallel, spanning the year prior to implementation (baseline) and the implementation period. Following publication of the original study protocol, the COVID-19 crisis delayed implementation of the full PRIME Parkinson care model by two years and hampered the recruitment of study participants. Objective: To describe which methodological adjustments were made to the study protocol because of these developments. Methods: We compare various outcomes between a region where PRIME Parkinson care was implemented (innovation region) versus the rest of the Netherlands (usual care region). We use healthcare claims data of virtually all people with Parkinson in the Netherlands and annual questionnaires in a representative subsample of 984 people with Parkinson, 566 caregivers and 192 healthcare professionals. Four major methodological adjustments had to be made since publication of the original protocol. First, we extended the evaluation period by two years. Second, we incorporated annual process measures of the stage of implementation of the new care model. Third, we introduced a real-time iterative feedback loop of interim results to relevant stakeholders. Fourth, we updated the statistical analysis plan. Discussion: This manuscript provides transparency in how the design and analyses of the evaluation study had to be adapted to control for external influences in a dynamic environment, including eruption of the COVID-19 crisis. Our solutions could serve as a template for evaluating other complex healthcare interventions in a dynamic environment. [ABSTRACT FROM AUTHOR]

Background: Palliative care for persons with Parkinson's disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question "Would you be surprised if this patient died in the next 12 months?" was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers. [ABSTRACT FROM AUTHOR]

Background: Culminating evidence shows that current care does not optimally meet the needs of persons with parkinsonism, their carers and healthcare professionals. Recently, a new model of care was developed to address the limitations of usual care: Proactive and Integrated Management and Empowerment in Parkinson's Disease (PRIME Parkinson). From 2021 onwards, PRIME Parkinson care will replace usual care in a well-defined region in The Netherlands. The utility of PRIME Parkinson care will be evaluated on a single primary endpoint (parkinsonism-related complications), which reflects the health of people with parkinsonism. Furthermore, several secondary endpoints will be measured for four dimensions: health, patient and carer experience, healthcare professional experience, and cost of healthcare. The reference will be usual care, which will be continued in other regions in The Netherlands.Methods: This is a prospective observational study which will run from January 1, 2020 until December 31, 2023. Before the new model of care will replace the usual care in the PRIME Parkinson care region all baseline assessments will take place. Outcomes will be informed by two data sources. We will use healthcare claims-based data to evaluate the primary endpoint, and costs of healthcare, in all persons with parkinsonism receiving PRIME Parkinson care (estimated number: 2,000) and all persons with parkinsonism receiving usual care in the other parts of The Netherlands (estimated number: 48,000). We will also evaluate secondary endpoints by performing annual questionnaire-based assessments. These assessments will be administered to a subsample across both regions (estimated numbers: 1,200 persons with parkinsonism, 600 carers and 250 healthcare professionals).Discussion: This prospective cohort study will evaluate the utility of a novel integrated model of care for persons with parkinsonism in The Netherlands. We anticipate that the results of this study will also provide insight for the delivery of care to persons with parkinsonism in other regions and may inform the design of a similar model for other chronic health conditions. [ABSTRACT FROM AUTHOR]

Background: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects. [ABSTRACT FROM AUTHOR]

Background: Parkinson's disease (PD) is a progressive degenerative disease without curative treatment perspectives. Even when palliative care for people with PD seems to be beneficial, the need for palliative care is often not timely recognized. Aim: Our aim was to develop a tool that can help healthcare professionals in timely identifying palliative care needs in people with PD. Design: We used a mixed-methods design, including individual and focus group interviews and a three-round modified Delphi study with healthcare professionals from a multidisciplinary field. Results: Data from the interviews suggested two distinct moments in the progressive PD trajectory: 1) an ultimate moment to initiate Advance Care Planning (ACP); and 2) the actual start of the palliative phase. During the Delphi process, six indicators for ACP were identified, such as presence of frequent falls and first unplanned hospital admission. The start of the palliative phase involved four indicators: 1) personal goals have started to focus on maximization of comfort; 2) care needs have changed; 3) PD drug treatment has become less effective or an increasingly complex regime of drug treatments is needed; and 4) specific PD-symptoms or complications have appeared, such as significant weight loss, recurrent infections, or progressive dysphagia. Indicators for both moments are included in the RADboud indicators for PAlliative Care Needs in Parkinson's Disease (RADPAC-PD) tool. Conclusion: The RADPAC-PD may support healthcare professionals in timely initiating palliative care for persons with PD. Identification of one or more indicators can mark the need for ACP or the palliative phase. We expect that applying the RADPAC-PD, for example on an annual basis throughout the PD trajectory, can facilitate identification of the palliative phase in PD patients in daily practice. However, further prospective research is needed on the implementation of the RADPAC-PD. [ABSTRACT FROM AUTHOR]

Background: Early 2014, Kaiser Permanente decided to adopt an innovative model for network-based allied healthcare for persons with Parkinson's disease (PD), based on the principles of the Dutch ParkinsonNet. Objective: We present the interventions that were performed to implement this method at Kaiser Permanente and we show the first outcomes based on these interventions. Methods: In this study, 57 physical therapists, 18 speech therapists and 20 occupational therapists, as well as 13 medical centers across the state of California were included. Nine interventions were performed more or less simultaneously, including training and education of healthcare providers and patients, a train the trainer curriculum, organizing IT, streamlining referral processes and building networks. Results: At the start, less than 30% of the patients within the Southern California Region received specialized allied health treatment (consisting of, i.e., gait training, voice training or guidance in activities of daily life). After one year, almost 55% of patients received specialized allied health treatment. In the second year, this number increased to just under 67%, suggesting a sustained concentration of care (the second core component of networked care). This can be seen as a first indicator for successful implementation of the ParkinsonNet network at Kaiser Permanente. Conclusions: The importance of these findings lies in the fact that a healthcare innovation that proved effective in one country can be transferred successfully to another country and to another healthcare system. [ABSTRACT FROM AUTHOR]

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). The interviewers combined the most informative quotations into a comprehensive video, which was used as feedback to the interviewees. The interviewees then identified the most important needs in a consensus meeting. Results and Conclusions: The approach revealed that patients were more concerned about the impact of Parkinson's disease on their daily lives than about the bio-medical aspects of the disease. Their top unmet needs were: (1) more self management; (2) better interdisciplinary collaboration between different healthcare professionals; (3) more time to discuss the future and possible scenarios; and (4) a healthcare professional acting as a single point of access, acting as personal case manager, either to solve problems directly or to direct patients to the professional best equipped to address the problem at hand. These results can now be used to further optimize the care for patients with Parkinson's disease. [ABSTRACT FROM AUTHOR]

Background: Parkinson's disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and - if needed - the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD. Methods/design: We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5-15 patients with PD and their family caregiver will be followed prospectively for 8-12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver. Discussion: This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research. [ABSTRACT FROM AUTHOR]

The article reports that patients with Parkinson's disease need long-term care to manage their condition. It describes the benefits of the ParkinsonNet approach, a model of integrated care provided by a network of specialists in the Netherlands which has succeeded in shifting care away from institutions towards community-based care, mainly in patients' home. It also argues that the model offers promise for other long-term conditions.

Background: Parkinson's disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals' experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands. Methods: This was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups (n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: "In the past 2 years, did you treat or support a person with PD who subsequently died?" The data were analyzed by thematic text analysis. Results: Health care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons' needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity. Conclusions: Health care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons' preferences. Additional training can help to become more knowledgeable and confident. [ABSTRACT FROM AUTHOR]

Abstract: Falls in Parkinson's disease (PD) are common and frequently devastating. Falls prevention is an urgent priority, but there is no accepted program that specifically addresses the risk profile in PD. Therefore, we aimed to provide consensus-based clinical practice recommendations that systematically address potential fall risk factors in PD. We developed an overview of both generic (age-related) and PD-specific factors. For each factor, we specified: best method of ascertainment; disciplines that should be involved in assessment and treatment; and which interventions could be engaged. Using a web-based tool, we asked 27 clinically active professionals from multiple relevant disciplines to evaluate this overview. The revised version was subsequently reviewed by 12 experts. Risk factors and their associated interventions were included in the final set of recommendations when at least 66% of reviewing experts agreed. These recommendations included 31 risk factors. Nearly all required a multidisciplinary team approach, usually involving a neurologist and PD-nurse specialist. Finally, the expert panel proposed to first identify the specific fall type and to tailor screening and treatment accordingly. A routine evaluation of all risk factors remains reserved for high-risk patients without prior falls, or for patients with seemingly unexplained falls. In conclusion, this project produced a set of consensus-based clinical practice recommendations for the examination and management of falls in PD. These may be used in two ways: for pragmatic use in current clinical practice, pending further evidence; and as the active intervention in clinical trials, aiming to evaluate the effectiveness and cost-effectiveness of large scale implementation. [Copyright &y& Elsevier]