Home-Based Titration with Duodenal Infusion of Levodopa-Carbidopa Intestinal Gel in People with Parkinson's Disease: An Observational Feasibility Study.

Background: Testing and titration of the right levodopa equivalent dose are usually performed during a hospital admission. However, optimal dose titration in people with Parkinson's disease (PwPs) may depend on home environment, emotional stress, and physical activity of everyday life. Objective: Firstly, to evaluate the feasibility and safety of a home-based LCIG titration program and patients'/caregivers' satisfaction. Secondly, to identify barriers and facilitators for home-based titration. Method: This study assesses the feasibility and safety of home-based titration of levodopa duodenal infusions with the use of self-reported evaluation questionnaires with open-ended questions included, registration of total time used, and number of contacts/visits. A telemedicine solution was used to remotely monitor the patients, adjust treatment, and provide support and guidance to patients and caregivers. Results: Ten of 12 PwPs (5 females and 7 males) completed the total titration program. Eight of the 12 PwPs were dependent on help. These 8 PwPs also had a high burden of nonmotor symptoms (NMS). Cognitive impairments varied in severity (range 16-30). Time spent with home visits was on average 93.4 minutes (ranging from 35 to 180 minutes), and the length of the total titration (LCIG initiation to termination of titration) was on average 3.4 days with 2-5 (mean 3.2) contacts/visits with PD team members. The average score on the satisfaction evaluation questionnaires was lower in the caregiver group (mean 31.8) than the PwP outcome (mean 36.2). Conclusions: Telehealth-assisted home-based titration programs are feasible due to the length of the titration period, number of contacts, and time spent in PwPs' private homes, are rated satisfactory and safe by PwPs and caregivers, and may be a substitute for in-hospital treatment. Clinical recommendations including facilitators and barriers from a patient/caregiver perspective are displayed. This trial is registered with NCT4196647.

Comparison of two types of extension tubes for people with Parkinson's disease in advanced treatment with levodopa-entacapone-carbidopa intestinal gel infusions: a prospective, crossover quality study.

BACKGROUND: Within Parkinson's disease (PD) management, a pivotal juncture often arises when individuals with PD (PwP) necessitate advanced therapies to stabilise symptom fluctuations and reduce off-periods, which are intrinsic to living with PD. One such intervention is the infusion of duodenal levodopa-entacapone-carbidopa intestinal gel (LECIG), which confers a more dependable levodopa plasma concentration compared with conventional oral therapy. It involves the insertion of a percutaneous endoscopic gastrojejunostomy (PEG-J) tube, facilitating direct access to the stomach and jejunum. Then, a slender tube extends into the small intestine, facilitating the continuous delivery of LECIG via a portable pump. The PEG-J incorporates an extension tube that permits patients with PD to connect the medication pump. OBJECTIVE: The objective of this study was to assess and compare two types of extension tubes a standard; a standard tube and the ENFit extension tube. METHOD: Employing a prospective, crossover design at a single centre in Denmark. Each participant evaluated both extension tubes for 14 days. The primary outcome measure was patient-reported evaluation measures through a nine-item questionnaire using a 5-point Likert scale and 10th open-ended qualitative question. RESULTS: Of the 12 recruited PwP, 10 successfully completed both testing periods and submitted self-reported questionnaires. The participants, with an average age of 70.3 years, comprised three men and seven women. Among them, five had a spouse or cohabitant, while five lived independently (with one residing in a nursing home). The average duration of PD diagnosis was 16.4 years, with an average of 2.6 years since the implantation of the medication pump. The ENFit tube outperformed the standard tube across all nine evaluation criteria, particularly excelling in terms of usability (items 4-6), safety (item 2) and overall product preference (item 9).

Development of a tailored intervention targeting sedentary behavior and physical activity in people with stroke and diabetes: A qualitative study using a co-creation framework.

Purpose: Type 2 diabetes and sedentary behavior pose serious health risks in stroke survivors. Using a co-creation framework, this study aimed to develop an intervention in collaboration with stroke survivors with type 2 diabetes, relatives, and cross-sectoral health care professionals to reduce sedentary behavior and increase physical activity. Materials and methods: This qualitative explorative study used a co-creation framework consisting of a workshop and focus group interviews with stroke survivors with type 2 diabetes (n = 3), relative (n = 1), and health care professionals (n = 10) to develop the intervention. A content analysis was used to analyze data. Results: The developed "Everyday Life is Rehabilitation" (ELiR) intervention consisted of a tailored 12-week home-based behavior change intervention with two consultations of action planning, goal setting, motivational interviewing, and fatigue management including education on sedentary behavior, physical activity, and fatigue. The intervention has a minimalistic setup using a double-page paper "Everyday Life is Rehabilitation" (ELiR) instrument making it implementable and tangible. Conclusions: In this study, a theoretical framework was used to develop a tailored 12-week home-based behavior change intervention. Strategies to reduce sedentary behavior and increase physical activity through activities of daily living along with fatigue management in stroke survivors with type 2 diabetes were identified.

Clinical Markers of 6 Pre-dominant Coping Behaviors in Living With Parkinson Disease: A Convergent Mixed Methods Study.

People with Parkinson's disease (PwP) experience a variety of symptoms and fluctuations in these, which they have to cope with every day. In tailoring a person-centered treatment to PwP there is a lack of knowledge about the association between pre-dominant coping behaviors and clinical markers among PwP. To describe and compare specific clinical markers between 6 suggested coping behaviors. Thirty-four PwP, who previously had been classified into 6 different pre-dominant coping behaviors, were included in this mixed methods study. Six primary variables were included in the descriptive analysis; motor function (UPDRS-III), non-motor symptoms score (NMS-Quest), change in bradykinesia score, apathy score (LARS), personality traits (NEO-FFI), and cognitive status (evaluated by a neuropsychologist). The merged results of this mixed methods study indicate that clinical markers as apathy, burden of non-motor symptoms, cognitive impairments and personality traits, have the potential to impact the coping behavior in PwP. In a clinical setting the markers; NMS-burden, degree of apathy, cognition, and personality traits may indicate specific coping behavior. Three of the six suggested typologies of coping behaviors differed from the other groups when comparing descriptive data. In order to improve patient care and guide the development of person-centered therapies, each PwP should be approached based on those typologies.

On the frontline treating COVID-19: A pendulum experience-from meaningful to overwhelming-for Danish healthcare professionals.

OBJECTIVES: In the current study, we aimed to explore the experiences and attitudes among healthcare professionals as they transitioned from their familiar disciplines to respiratory medicine, intensive care or other departments during the first wave of the COVID-19 pandemic. BACKGROUND: In preparation for the increasing number of patients suspected of having or who would be severely ill from COVID-19, a major reconstruction of the Danish Healthcare System was initiated. The capacity of the healthcare system to respond to the unprecedented situation was dependent on healthcare professionals' willingness and ability to engage in these new circumstances. For some, this may have resulted in uncertainty, anxiety and fear. DESIGN: The study was a descriptive study using semi-structured focus group interviews. Healthcare professionals (n = 62) from seven departments were included, and 11 focus group interviews were conducted. The focus group interviews took place during June 2020. Analyses was conducted using thematic analysis. The current study was reported using the consolidated criteria for reporting Qualitative research (COREQ). RESULTS: Healthcare professionals experiences was described by five themes: 1) Voluntary involvement, 2) Changes within the organisation, 3) Risks, 4) Professional identity and 5) Personal investment. Common to all five themes was the feeling of being on a pendulum from a meaningful experience to an experience of mental overload, when situations and decisions no longer seemed to be worthwhile. CONCLUSIONS: Healthcare professionals experienced a pendulum between a meaningful experience and one of mental overload during the COVID-19 pandemic. The swinging was conditioned by the prevailing context and was unavoidable. RELEVANCE TO CLINICAL PRACTICE: To balance the continuous pendulum swing, leaders must consider involvement, and to be supportive and appreciative in their leader style. This is consistent with a person-centred leadership that facilitates a well-adjusted work-life balance and may help prevent mental overload developing into burnout.

Identification of Pre-Dominant Coping Types in Patients with Parkinson's Disease: An Abductive Content Analysis of Video-Based Narratives.

BACKGROUND: People with Parkinson's disease suffer from a range of various symptoms. Altered movement patterns frequently represent the prevailing symptom experience and influence the everyday life of the affected persons. OBJECTIVE: This qualitative study explores how persons with Parkinson's disease experience everyday life with a complex symptom profile and how they manage the consequential challenges in their daily life, as well as the motivation and consequences of these coping behaviours. METHODS: Thirty-four patients with Parkinson's disease were interviewed as an integrated part of the method Video-based Narrative. The interviews were analysed by means of qualitative content analysis according to Graneheim & Lundman. RESULTS: The analysis identified six predominant coping types with different behavioural traits: The convincing behaviour, The economizing behaviour, The encapsulating behaviour, The evasive behaviour, The adaptable behaviour, and The dynamic behaviour. The strategies embedded in each of the six types are diverse, but all participants seek to maintain their integrity in different ways leading to the main motivation "To stay the same person". CONCLUSION: Healthcare professionals should be aware of the patients' various coping behaviour in order to offer a person-centred approach. Psychoeducational interventions to promote coping skills may be essential in incorporating disease-related changes in the conduct of everyday life with Parkinson's disease to maintain integrity.