There is 'no cure for caregiving': the experience of women caring for husbands living with Parkinson's disease.

BACKGROUND: Parkinson's disease is a progressive neurodegenerative disorder. The majority of the nearly 9 million people living with Parkinson's disease are men. As such, caregiving is often assumed by wives as the disease progresses. However, there is little research about the lived experience of wives as they transition to caregivers. OBJECTIVE: To describe the lived experience of wife caregivers of male spouses living at home with Parkinson's disease. METHODS: A descriptive phenomenological study. Semi-structured interviews were recorded and transcribed for analysis in Atlas.ti using Colaizzi's method. RESULTS: Thirteen women, aged 50 to 83 years, were interviewed. Five themes emerged from the analysis, (1) caregiver who? (2) taking it day by day, (3) not sure what to do next, (4) just too much, and (5) caring is your soul's growth, to support the central theme "there is no cure for caregiving." CONCLUSION: Transitioning from wife to caregiver was a gradual but difficult process. Although the wife caregivers wanted to be part of the health care team, they remained outsiders. Clinicians need to recognize the wives as care coordinators linking medical management with home care. Policy makers need to develop reimbursement models that provide wife caregivers with support groups, education programs, and telemental health services.

Habilidades de desempeño ocupacional en la enfermedad de Parkinson: relación con la calidad de vida relacionada con la salud y la carga del cuidador / Occupational performance skills in Parkinson’s disease: relationship with health-related quality of life and caregiver burden

Introducción: La progresión de la enfermedad de Parkinson (EP) da lugar a una pérdida de la capacidad para realizar actividades de la vida diaria y de la calidad de vida relacionada con la salud. Los objetivos de este estudio fueron establecer las relaciones entre las habilidades de desempeño ocupacional y la calidad de vida relacionada con la salud, y el grado de carga del cuidador en pacientes con EP. Pacientes y métodos: Participaron en el estudio 49 sujetos en diferentes estadios de EP según la escala de Hoehn y Yahr. Los pacientes fueron evaluados usando el cuestionario de la enfermedad de Parkinson (PDQ-39), el EuroQoL (EQ-5D), la evaluación de las habilidades motoras y de procesamiento (AMPS), y la entrevista de Zarit sobre la carga del cuidador (ZCBI). Resultados: Se encontraron fuertes correlaciones entre la sección de habilidades motoras de la AMPS y el PDQ-39 (r = –0,76; p = 0,001), y los cuestionarios EQ-5D (r = 0,72; p = 0,001), mientras que se encontraron correlaciones moderadas con las habilidades de procesamiento. Las habilidades de procesamiento de la AMPS se correlacionaron moderadamente con la movilidad y las actividades de la vida diaria. La ZCBI sólo se correlacionó débilmente con las habilidades motoras de la AMPS (r = –0,34; p = 0,02). Conclusión: Las puntuaciones decrecientes en la AMPS están estrechamente relacionadas con la pérdida de calidad de vida relacionada con la salud en pacientes con EP y, en menor medida, con el grado de carga del cuidador.(AU)

Introduction: The progression of Parkinson’s disease (PD) results in a loss of ability to performance activities of daily living and health-related quality of life. The objectives of this study were to establish the relations between occupational performance skills and health-related quality of life, and the degree of caregiver burden in PD patients. Patients and methods: Forty-nine patients at different stages of PD according to the Hoehn and Yahr scale participated in the study. Patients were assessed using the Parkinson’s Disease Questionnaire (PDQ-39), the EuroQoL (EQ-5D), the Assessment of Motor and Process Skills (AMPS), and the Zarit Caregiver Burden Interview (ZCBI). Results: Strong correlations were found between the motor skills section of the AMPS scale and the PDQ-39 (r = –0.76; p = 0.001), and the EQ-5D questionnaires (r = 0.72; p = 0.001), while moderate correlations were found with the process skills. AMPS process skills were moderately correlated with mobility and activities of daily living. The ZCBI was only weakly correlated with the AMPS motor skills (r = –0.34; p = 0.02). Conclusion: Declining scores on the AMPS scale are closely related to the loss of health-related quality of life in PD patients, and, to a lesser extent, with the degree of caregiver burden.(AU)

Cuidados de enfermagem às pessoas com doença de Parkinson na Atenção primária à Saúde: protocolo de scoping review / Nursing care for people with Parkinson's disease in Primary Health Care: a scoping review protocol

Resumo Objetivo: Identificar na literatura os principais temas investigados sobre cuidados de enfermagem à pessoa com doença de Parkinson na atenção primária à saúde. Metodologia: Trata-se de um protocolo de revisão de escopo, realizado de acordo com a metodologia do Joanna Briggs Institute e checklist do Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR), seguindo as seguintes etapas: protocolo; critérios de elegibilidade; fontes de informação; estratégia de pesquisa; seleção de fontes de evidência; extração dos dados; análise de dados e apresentação dos resultados. Tem como pergunta de revisão: Quais os cuidados de enfermagem à pessoa com doença de Parkinson em nível de atenção primária à saúde, descritas na literatura? Para identificar documentos relevantes, as seguintes bases de dados bibliográficas serão pesquisadas: Public Medline, Cumulative Index to Nursing & Allied Health Literature, Web of Science, SciVerse Scopus, Base de Dados de Enfermagem, Literatura Latino-Americano e do Caribe em Ciências da Saúde, e Scientific Electronic Library Online. O resultado do fluxo de seleção, desta etapa metodológica, será apresentado em forma de figura, conforme o Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Resultados: Os resultados deste estudo possibilitarão o conhecimento das principais áreas de cuidados e intervenções de enfermagem voltadas a pessoas com doença de Parkinson, na atenção primária à saúde. Conclusão: Este estudo constitui o primeiro passo em uma agenda de pesquisa que visa aprofundar a análise e sistematização dos cuidados de enfermagem às pessoas que vivem com doença de Parkinson.

Resumen Objetivo: Identificar en la literatura los principales temas investigados sobre el cuidado de enfermería para personas con enfermedad de Parkinson en atención primaria de salud. Método: Es un protocolo de revisión de alcance, llevado a cabo de acuerdo con la metodología del Instituto Joanna Briggs y la lista de verificación de los elementos de informes preferidos para revisiones sistemáticas y extensión de metaanálisis para revisiones de alcance(PRISMA-ScR), siguiendo los siguientes pasos: protocolo, criterio de elegibilidad, fuentes de información, estrategia de investigación, selección de fuentes de evidencia, extracción de datos, análisis de datos y presentación de resultados. Tiene como pregunta de revisión la siguiente: ¿cuáles son los cuidados de enfermería brindados a las personas con enfermedad de Parkinson en el nivel de atención primaria de salud, descritos en la literatura? Para identificar documentos relevantes, se buscó en las siguientes bases de datos bibliográficas: Medline pública, Índice acumulativo de literatura de enfermería y salud aliada, Web of Science, SciVerse Scopus, Base de datos de enfermería, Literatura latinoamericana y caribeña en ciencias de la salud y Scientific Electronic Library en línea. El resultado del flujo de selección, de este paso metodológico, se presentará en forma de figura, de acuerdo con los elementos de informes preferidos para revisiones sistemáticas y metaanálisis. Resultados: Los resultados de este estudio permitirán conocer las principales áreas de atención e intervenciones de enfermería dirigidas a personas con enfermedad de Parkinson, en la atención primaria de salud. Conclusión: Este estudio es el primer paso de una agenda de investigación que tiene como objetivo profundizar en el análisis y sistematización de la atención de enfermería a las personas que viven con la enfermedad de Parkinson.

Abstract Aim: To identify in the literature the main topics investigated about nursing care for people with Parkinson's disease in primary health care. Method: This is a scope review protocol carried out according to the Joanna Briggs Institute methodology and the Preferred Reporting Items for Systematic reviews checklist and the Meta-Analyzes extension for Scoping Reviews(PRISMA-ScR). This investigation will follow these steps: protocol, eligibility criteria, information sources, research strategy, selection of sources, data extraction, data analysis, and presentation of results. Its review question is "What are the nursing cares provided to people with Parkinson's disease in primary health care as described in the literature?". To identify the relevant documents, the following bibliographic databases will be used: Public Medline, Cumulative Index to Nursing & Allied Health Literature, Web of Science, SciVerse Scopus, Nursing Database, Latin American and Caribbean Literature in Health Sciences, and Scientific Electronic Library Online. The results of this selections flow will be presented using figures as outlined in the Preferred Reporting Items for Systematic Reviews and Meta-Analyzes. Results: The results of this study will shed light on the main researched areas of care and nursing interventions aimed at people with Parkinson's disease in primary healthcare. Conclusion: This study is the first step in a research agenda that aims to deepen the analysis and systematization of nursing care for people living with Parkinson's disease.

Depression and Anxiety Management in Parkinson Disease.

ABSTRACT: BACKGROUND: Depression and anxiety are common but underrecognized and undertreated nonmotor symptoms of Parkinson disease (PD) due to their diagnostic criteria overlapping with other PD symptoms, limited randomized controlled studies in this specific population, and the need for multidisciplinary expertise. The purpose of this article is to offer evidence-based solutions for managing comorbid depression and anxiety in patients with PD through a case study analysis. CASE STUDY: A case study is used to illustrate the somatic manifestations of anxiety in PD that leads to diagnostic challenge and multidisciplinary management. MANAGEMENT CONSIDERATIONS: The appropriate use of screening tools, pharmacological and nonpharmacological management, and education are important interventions to consider when treating depression and anxiety in PD. CONCLUSION: Effective management requires accurate assessments, individualized treatment modalities, and patient education. Nurses who are knowledgeable about the effects and management of mood disorders in PD can play an integral role in the multidisciplinary team approach for assessment, patient and caregiver education, and treatment plan implementation.

Impact of the COVID-19 Pandemic on the Quality of Life of Patients with Parkinson's Disease and Their Caregivers: A Single-Center Survey in Tochigi Prefecture.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has negatively affected the mental health of the general population. OBJECTIVE: We investigated the determinants of quality of life (QOL) in Parkinson's disease (PD) patients during the COVID-19 pandemic. METHODS: Impacts of lifestyle changes due to the COVID-19 pandemic on 100 patients with PD and their caregivers/spouses were assessed. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression. The physical component summary (PCS) and mental component summary (MCS) scores of the short form (SF)-8 were used to evaluate health-related QOL. RESULTS: Regarding health-related QOL, physical function, role physical, general health, vitality and the PCS score were significantly worse in PD patients than in caregivers. Worsening of PD-related symptoms, increased stress, and decreased physical activity were observed in 29.0%, 37.0% and 44.0% of PD patients, respectively. Sixteen patients (16.0%) experienced problems with hospital access, but none reported medication shortages. Strong concerns about COVID-19 were reported by 47.0% of caregivers and 50.0% of PD patients. In PD patients, increased gait disturbance and rigidity, disease severity, smoking, the levodopa equivalent dose and decreased body weight predicted a worse PCS score; anxiety, depression, female sex, stress and long disease duration predicted a worse MCS score. In caregivers, age and smoking contributed to a worse PCS score; depression, stress and worsening patient mood contributed to a worse MCS score. CONCLUSION: We report the negative impacts of the COVID-19 pandemic on health-related QOL and its determinants in PD patients and their caregivers.

The effectiveness of specialized nursing interventions for patients with Parkinson disease: A randomized controlled study protocol.

BACKGROUND: The purpose of this experiment is to evaluate the impact of the care of Parkinson disease nurse specialist on improving motor symptoms and life quality for patients with Parkinson disease (PD). METHOD: This is a randomized controlled research, and it will be conducted from April 2021 to October 2021 at Sichuan Provincial People's Hospital. The experiment was granted through the Research Ethics Committee of Sichuan Provincial People's Hospital (004510293). All the patients suffer from PD, age 18 years or older, both female and male, regardless of the duration or severity of this disease are eligible. The exclusion criteria contains: lack sufficient knowledge to complete questionnaires, serious physical comorbidities or refuse to take part in the program. In our experiment, the major result measures are motor symptoms and life quality. For the measurement of life quality, we will utilize Parkinson disease Questionnaire-39, the most extensively utilized the scale of life quality in PD. The evaluation of motor symptoms severity is carried out with the revision of Unified Parkinson Disease Rating Scale sponsored by Movement Disorder Society. RESULTS: Table 1 indicates clinical outcomes at different time points. CONCLUSION: The Parkinson's disease nurse specialist care may promote the life quality in the PD patients. TRIAL REGISTRATION NUMBER: researchregistry 6284.

Stakeholder perceptions of components of a Parkinson disease care management intervention, care coordination for health promotion and activities in Parkinson's disease (CHAPS).

BACKGROUND: A recent nurse-led proactive care management intervention, Care Coordination for Health Promotion and Activities in Parkinson Disease (CHAPS), improved care quality when compared to usual care in a randomized controlled trial. Therefore, stakeholder (patient participants, nurse care managers, and Parkinson disease (PD) specialists) perceptions of key intervention components merit evaluation to inform decisions about dissemination. METHODS: This multi-site study occurred in five southwest United States Veterans Health Administration medical centers. Stakeholders were surveyed on their perceptions of CHAPS including the CHAPS Assessment, CHAPS nurse care managers, the Siebens Domain Management Model™ (a practical clinical model), and the Siebens Health Care Notebook (Notebook) (self-care tool). Participants' electronic medical records were abstracted for perceptions of the Notebook. Statistical analysis software was used to provide summary statistics; open card sorting methodology was used to identify themes and attributes in qualitative data including usability of some components. RESULTS: Participants, overall, highly rated their medication self-management, acknowledged some challenges with the CHAPS self-care tools, reported knowledge of PD specialist follow-up and PD red flags, and rated CHAPS nurse care managers as helpful. Nurse care manager responses indicated the CHAPS Assessment and Program highly facilitated care of their patients. Most all PD specialists would refer other patients to CHAPS. Nurse care manager and PD specialist responses indicated improved participant management of their PD. Three themes emerged in participant perceptions of the Notebook: Notebook Assets (e.g., benefits and features-liked); Deferring Notebook Review (e.g., no time to review); and Reasons for Not Using (e.g., participant preference). Shared attributes regarding the Siebens Domain Management Model and Notebook usability, reported by nurse care managers, were user-friendly, person/patient-centered, and organized. Some challenges to their use were also reported. CONCLUSIONS: Overall, stakeholder perceptions of the proactive nurse-led CHAPS intervention indicated its value in the care of individuals with PD. Responses about the CHAPS Assessment, Siebens Domain Management Model, and Notebook self-care tool signified their usefulness. Stakeholders' constructive suggestions indicated their engagement in CHAPS. These findings support CHAPS dissemination and contribute to research in care management. TRIAL REGISTRATION: ClinicalTrials.gov as NCT01532986 , registered on January 13, 2012.

Quality and extent of implementation of a nurse-led care management intervention: care coordination for health promotion and activities in Parkinson's disease (CHAPS).

BACKGROUND: A recent nurse-led, telephone-administered 18-month intervention, Care Coordination for Health Promotion and Activities in Parkinson's Disease (CHAPS), was tested in a randomized controlled trial and improved care quality. Therefore, intervention details on nurse care manager activity (types and frequencies) and participant actions are needed to support potential dissemination. Activities include nurse care manager use of a holistic organizing framework, identification of Parkinson's disease (PD)-related problems/topics, communication with PD specialists and care coordination, participant coaching, and participant self-care actions including use of a notebook self-care tool. METHODS: This article reports descriptive data on the CHAPS intervention. The study setting was five sites in the Veterans Affairs Healthcare System. Sociodemographic data were gathered from surveys of study participants (community-dwelling veterans with PD). Nurse care manager intervention activities were abstracted from electronic medical records and logbooks. Statistical analysis software was used to provide summary statistics; closed card sorting was used to group some data. RESULTS: Intervention participants (n = 140) were primarily men, mean age 69.4 years (standard deviation 10.3) and community-dwelling. All received the CHAPS Initial Assessment, which had algorithms designed to identify 31 unique CHAPS standard problems/topics. These were frequently documented (n = 4938), and 98.6% were grouped by assigned domain from the Organizing Framework (Siebens Domain Management Model™). Nurse care managers performed 27 unique activity types to address identified problems, collaborating with participants and PD specialists. The two most frequent unique activities were counseling/emotional support (n = 387) and medication management (n = 349). Both were among 2749 total performed activities in the category Implementing Interventions (coaching). Participants reported unique self-care action types (n = 23) including use of a new notebook self-care tool. CONCLUSIONS: CHAPS nurse care managers implemented multiple activities including participant coaching and care coordination per the CHAPS protocol. Participants reported various self-care actions including use of a personalized notebook. These findings indicate good quality and extent of implementation, contribute to ensuring reproducibility, and support CHAPS dissemination as a real-world approach to improve care quality. TRIAL REGISTRATION: ClinicalTrials.gov as NCT01532986 , registered on January 13, 2012.

The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms.

INTRODUCTION: Approximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population. METHODS: Secondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale. RESULTS: Of 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms. CONCLUSION: Findings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.

Vivencias y sentimientos de los pacientes con Parkinson / Experiences and feelings of patients with Parkinson's

OBJETIVO: Conocer a través de los propios pacientes cómo es el proceso de convivir con la enfermedad de Parkinson. MÉTODO: Estudio cualitativo de enfoque fenomenológico. La muestra estuvo constituida por 6 participantes. Los datos se obtuvieron a través de una entrevista individual semiestructurada. Las conversaciones fueron grabadas en audio, con el consentimiento de los participantes, y luego fueron transcritas haciendo un análisis temático. Este estudio fue aprobado por el pertinente comité de ética de investigación. RESULTADOS: Del análisis de los datos surgieron 6 categorías: aceptación; afrontamiento; familia y amigos; la sociedad y el Parkinson; instituciones e investigación; y futuro. Todos los sujetos recuerdan el día del diagnóstico y coinciden en que este se prolonga demasiado en el tiempo. A partir de ese momento empezaron a desarrollar mecanismos de adaptación y afrontamiento que se vieron beneficiados o perjudicados por diversos aspectos como: la medicación, los síntomas presentes, el trabajo o el estado anímico, otorgando al apoyo familiar un papel fundamental. Expresan que actualmente la sociedad no comprende a las personas con Parkinson. CONCLUSIONES: El Parkinson es una enfermedad muy desconocida para la sociedad, lo que dificulta la aceptación y afrontamiento de la enfermedad por parte de los afectados. El estado anímico es fundamental para lograr adaptarse a la enfermedad e integrarla en el día a día, mientras que la familia es un pilar importante en dicho proceso

OBJECTIVE: To discover through the patients themselves the process of coexisting with Parkinson's disease. METHOD: Qualitative study of phenomenological approach. The sample consisted of 6 participants. The data was obtained through a semi-structured individual interview. The conversations were audio recorded, with the consent of the participants, and then transcribed to make a thematic analysis. This study was approved by the relevant Research Ethics Committee. RESULTS: From the analysis of the data, 6 categories emerged: Acceptance; Coping; Family and friends; Society and Parkinson's; Institutions and research; Future. All the subjects remembered the day of the diagnosis, and agreed that this takes too long. From that moment they began to develop adaptation and coping mechanisms that were benefited or harmed by various aspects such as: medication, present symptoms, work or mood, making family support fundamental. They expressed that society does not currently understand people with Parkinson's disease. CONCLUSIONS: Parkinson's disease is largely unknown to society, which makes it difficult for those affected to accept and cope with the disease. State of mind is essential to adapt to the disease, and integrate it into daily living, while the family is an important pillar in this process

Quality Improvement in Parkinson's Disease: A Successful Program to Enhance Timely Administration of Levodopa in the Hospital.

BACKGROUND: Patients hospitalized with Parkinson's disease (PD) require timely delivery of carbidopa-levodopa (C/L) medication. Ill-timed administration of C/L doses is associated with greater morbidity and longer lengths of stay. OBJECTIVE: To understand the barriers to timely C/L administration, and implement strategies to improve the administration of the drug to hospitalized PD patients. METHODS: Several key strategies were employed in 2015 to improve the timely delivery of C/L doses: 1. three kinds of nursing alert in the electronic medical record (EMR); 2. staff in-service education; 3. stocking immediate-release C/L into automated medication dispensing machines on key hospital units; 4. reports to nurse unit managers on timeliness of C/L administration; and 5. reconciliation of inpatient and outpatient levodopa orders by the hospital pharmacist upon admission. The primary outcome was the percent of C/L doses administered within 60, 30, and 15 minutes of scheduled time. RESULTS: Our urban hospital, affiliated with a Parkinson's Foundation Center of Excellence, had 5,939 C/L administrations in 2018. There was sustained improvement in timely delivery of doses, from 89.3% in 2012 to 96.5% in 2018 (within 60 minutes of the scheduled time), 65.5% to 86.4% (30 minutes), and 42.3% to 71.1% (15 minutes) (all p < 0.001). CONCLUSIONS: With multifaceted but relatively simple measures, we were able to "change the culture" so that hospitalized patients with Parkinson's disease receive levodopa on time.

"How Long Can I Carry On?" The Need for Palliative Care in Parkinson's Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers.

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.

Caregiver burden worsens in the second year after subthalamic nucleus deep brain stimulation for Parkinson's disease.

BACKGROUND: Caregiver burden (CB) in Parkinson's disease (PD) does not improve in the short term after bilateral subthalamic nucleus (STN) deep brain stimulation (DBS), despite motor improvement. This may be due to increased caregiver demands after surgery or the possibility that DBS unresponsive non-motor factors, such as executive dysfunction, contribute to CB. OBJECTIVE: To evaluate the trajectory of CB in year 2 following bilateral STN DBS surgery for PD, and to test whether post-operative CB changes correlate with changes in executive function in a subgroup with available neuropsychological testing. METHODS: This retrospective analysis included 35 patients with PD whose caregivers completed the Caregiver Burden Inventory (CBI) at baseline and between 9 and 24 months after bilateral STN DBS. 14 of these patients had neuropsychological testing both at baseline and within 6 months of their follow up CBI assessment. RESULTS: CBI scores showed worsened CB from baseline to follow-up (16.4-21.5, p = 0.006). There was no correlation between change in executive function and change in CBI in the smaller subsample. CONCLUSION: CB worsens in the 2 years after bilateral STN DBS despite improvement in motor symptoms and is not associated with change in executive dysfunction in the setting of advancing PD. These findings have implications on pre-operative counselling for patients and caregivers considering DBS for PD.

Sharing our story individualized and triadic nurse meetings support couples adjustment to living with deep brain stimulation for Parkinson's disease.

Treatment with deep brain stimulation for Parkinson's disease, leads to a rapid improvement in mobility, which may challenge patients and spouses when adjusting to everyday life. An intervention, developed to support the adjustment to everyday life with DBS, demonstrated that individualized meetings with a specialized nurse was experienced as important and fruitful by both patient and spouses. Purpose: The aim was to gain a deeper understanding of how the meetings contributed to the adjustment process. Method: 38 audio-recorded meetings and six written summaries from eight couples participating in the intervention, were analyzed in a hermeneutic process. Results: The analysis revealed four themes: A relational triad of co-creating personal knowing. Sharing and listening in an atmosphere of trust and openness. Unveiling the couple's everyday life, coping strategies and expectations. Supporting adjustment through knowing their personal story. Conclusion: The triadic dynamics in the meetings were quite particular. The main focus was the patients' and spouses' stories, individually and as a couple. The DBS nurse pursues solutions based on professional and specialized knowledge of Parkinson's disease and the couple's everyday life. Thus, the intervention meetings offered tailored, individualized and specialized care in supporting adjustment to DBS for PD both individually and as couples.

The cost-effectiveness of specialized nursing interventions for people with Parkinson's disease: the NICE-PD study protocol for a randomized controlled clinical trial.

BACKGROUND: Current guidelines recommend that every person with Parkinson's disease (PD) should have access to Parkinson's disease nurse specialist (PDNS) care. However, there is little scientific evidence of the cost-effectiveness of PDNS care. This hampers wider implementation, creates unequal access to care, and possibly leads to avoidable disability and costs. Therefore, we aim to study the (cost-)effectiveness of specialized nursing care provided by a PDNS compared with usual care (without PDNS) for people with PD in all disease stages. To gain more insight into the deployed interventions and their effects, a preplanned subgroup analysis will be performed on the basis of disease duration (diagnosis < 5, 5-10, or > 10 years ago). METHODS: We will perform an 18-month, single-blind, randomized controlled clinical trial in eight community hospitals in the Netherlands. A total of 240 people with PD who have not been treated by a PDNS over the past 2 years will be included, independent of disease severity or duration. In each hospital, 30 patients will randomly be allocated in a 1:1 ratio to receive either care by a PDNS (who works according to a recent guideline on PDNS care) or usual care. We will use two co-primary outcomes: quality of life (measured with the Parkinson's Disease Questionnaire-39) and motor symptoms (measured with the Movement Disorders Society-sponsored revision of the Unified Parkinson's Disease Rating Scale part III). Secondary outcomes include nonmotor symptoms, health-related quality of life, experienced quality of care, self-management, medication adherence, caregiver burden, and coping skills. Data will be collected after 12 months and 18 months by a blinded researcher. A healthcare utilization and productivity loss questionnaire will be completed every 3 months. DISCUSSION: The results of this trial will have an immediate impact on the current care of people with PD. We hypothesize that by offering more patients access to PDNS care, quality of life will increase. We also expect healthcare costs to remain equal because increases in direct medical costs (funding additional nurses) will be offset by a reduced number of consultations with the general practitioner and neurologist. If these outcomes are reached, wide implementation of PDNS care will be warranted. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03830190. Registered February 5, 2019 (retrospectively registered).