Need for personalized monitoring of Parkinson's disease: the perspectives of patients and specialized healthcare providers.

Background: Digital tools such as wearable sensors may help to monitor Parkinson's disease (PD) in daily life. To optimally achieve the expected benefits, such as personized care and improved self-management, it is essential to understand the perspective of both patients and the healthcare providers. Objectives: We identified the motivations for and barriers against monitoring PD symptoms among PD patients and healthcare providers. We also investigated which aspects of PD were considered most important to monitor in daily life, and which benefits and limitations of wearable sensors were expected. Methods: Online questionnaires were completed by 434 PD patients and 166 healthcare providers who were specialized in PD care (86 physiotherapists, 55 nurses, and 25 neurologists). To gain further understanding in the main findings, we subsequently conducted homogeneous focus groups with patients (n = 14), physiotherapists (n = 5), and nurses (n = 6), as well as individual interviews with neurologists (n = 5). Results: One third of the patients had monitored their PD symptoms in the past year, most commonly using a paper diary. Key motivations were: (1) discuss findings with healthcare providers, (2) obtain insight in the effect of medication and other treatments, and (3) follow the progression of the disease. Key barriers were: (1) not wanting to focus too much on having PD, (2) symptoms being relatively stable, and (3) lacking an easy-to-use tool. Prioritized symptoms of interest differed between patients and healthcare providers; patients gave a higher priority to fatigue, problems with fine motor movements and tremor, whereas professionals more frequently prioritized balance, freezing and hallucinations. Although both patients and healthcare providers were generally positive about the potential of wearable sensors for monitoring PD symptoms, the expected benefits and limitations varied considerably between groups and within the patient group. Conclusion: This study provides detailed information about the perspectives of patients, physiotherapists, nurses and neurologists on the merits of monitoring PD in daily life. The identified priorities differed considerably between patients and professionals, and this information is critical when defining the development and research agenda for the coming years. We also noted considerable differences in priorities between individual patients, highlighting the need for personalized disease monitoring.

How do community based dementia friendly initiatives work for people with dementia and their caregivers, and why? A rapid realist review.

OBJECTIVES: To describe and explain the outcomes of community dementia friendly initiatives (DFIs) for people with dementia and their caregivers to inform the development and tailoring of DFIs. METHODS: Literature searches on DFIs were performed through two systematic online database searches of PubMed, Embase, ASSIA, CINAHL and Google scholar. Papers were only included if they evaluated outcomes using empirical data from people with dementia or caregivers. Data collection and analysis were guided by the categorization in the DEM-FACT taxonomy and RAMESES guidelines for realist reviews. RESULTS: Of 7154 records identified, 22 papers were included with qualitative, mixed method and quantitative study designs. The synthesis led to a description of programme theories addressing caring, stimulating and activating communities. Outcomes for people with dementia and caregivers included having contact with others, enjoyment and decrease of stress and, lastly, support. This synthesis also indicated how people with dementia participated in a specific role in DFIs, such as patient, team member or active citizen. CONCLUSIONS: DFIs generate different outcomes for people with dementia and caregivers, depending on the kind of initiative and the specific role for people with dementia. These findings could be a catalyst for initiation and further development of DFIs in a dementia friendly community (DFC). This draws attention to the multiple aspects of DFCs and supports reflection on their essential principles.

Factors facilitating dementia case management: Results of online focus groups.

To obtain insight into facilitating factors for case management in dementia care, we conducted a qualitative study with 13 online focus groups (OFGs). Participants were professionals involved in dementia case management ( N = 99). We used mind-maps and the method of constant comparison for analysis. Participants perceived OFGs as a useful tool to explore their perspectives. The perceived advantage of OFGs was the flexibility and convenience of logging in at any time or place preferred. Five facilitating factors for case management were identified in the OFGs: 1. Good cooperation between partners; 2. Organisational embedding with an independent position of case managers; 3. Structural funding; 4. Competent case managers; 5. Familiarity with case management in the region. Good cooperation was essential for successful dementia case management and should thus be a primary concern for care providers.

Dementia case management through the eyes of informal carers: A national evaluation study.

This paper focuses on the evaluation of dementia case management in the Netherlands, as well as factors associated with positive evaluations of informal caregivers. A survey was completed by 554 informal carers. The majority of the informal carers were older (69% was 55+), and female (73%), and often concerned the partner or adult children of the person with dementia. Eighty percent indicated that the contact with the case manager facilitated their role as informal carer, while 95% or more stated that the case manager showed sufficient understanding, allowed enough space to decide together on how to approach problems in the care, took time to listen to their story, gave sufficient attention to and showed interest in their relative, took their schedule into account and/or kept appointments. Contrary to the expectations, multilevel analyses did not show association between informal caregivers' care burden and the evaluation of case management. Neither were the period living with dementia and the number of personal contacts with the case manager associated with the evaluations of informal caregivers. However, being the partner of the patient was significantly related ( p < 0.05) to a positive overall evaluation by informal carers. These results suggest that sufficient case management resources should be offered and targeted especially towards partners of people with dementia.

Use and Uptake of eHealth in General Practice: A Cross-Sectional Survey and Focus Group Study Among Health Care Users and General Practitioners.

BACKGROUND: Policy makers promote the use of eHealth to widen access to health care services and to improve the quality and safety of care. Nevertheless, the enthusiasm among policy makers for eHealth does not match its uptake and use. eHealth is defined in this study as "health services delivered or enhanced through the Internet and related information and communication technologies." OBJECTIVE: The objective of this study was to investigate (1) the current use of eHealth in the Netherlands by general practitioners (GPs) and health care users, (2) the future plans of GPs to provide eHealth and the willingness of health care users to use eHealth services, and (3) the perceived positive effects and barriers from the perspective of GPs and health care users. METHODS: A cross-sectional survey of a sample of Dutch GPs and members of the Dutch Health Care Consumer Panel was conducted in April 2014. A pre-structured questionnaire was completed by 171 GPs (12% response) and by 754 health care users (50% response). In addition, two focus groups were conducted in June 2014: one group with GPs (8 participants) and one with health care users (10 participants). RESULTS: Three-quarters of Dutch GPs that responded to the questionnaire (67.3%, 115/171) offered patients the possibility of requesting a prescription via the Internet, and half of them offered patients the possibility of asking a question via the Internet (49.1%, 84/171). In general, they did intend to provide future eHealth services. Nonetheless, many of the GPs perceived barriers, especially concerning its innovation (eg, insufficient reliable, secure systems) and the sociopolitical context (eg, lack of financial compensation for the time spent on implementation). By contrast, health care users were generally not aware of existing eHealth services offered by their GPs. Nevertheless, half of them were willing to use eHealth services when offered by their GP. In general, health care users have positive attitudes regarding eHealth. One in five (20.6%, 148/718) health care users perceived barriers to the use of eHealth. These included concerns about the safety of health information obtained via the Internet (66.7%, 96/144) and privacy aspects (55.6%, 80/144). CONCLUSIONS: GPs and health care users have generally positive attitudes towards eHealth, which is a prerequisite for the uptake of eHealth. But, general practitioners in particular perceive barriers to using eHealth and consider the implementation of eHealth to be complex. This study shows that there is room for improving awareness of eHealth services in primary care. It will take some time before these issues are resolved and eHealth can be fully adopted.

Does the organisational model of dementia case management make a difference in satisfaction with case management and caregiver burden? An evaluation study.

BACKGROUND: In the Netherlands, various organisational models of dementia case management exist. In this study the following four models are distinguished, based on differences in the availability of the service and in the case management function: Model 1: the case management service is available from first dementia symptoms + is always a separate specialist function; Model 2: the case management service is only available after a formal dementia diagnosis + is always a separate specialist function; Model 3: the case management service is available from first dementia symptoms + is often a combined function; Model 4: the case management service is only available after a formal dementia diagnosis + is often a combined function. The objectives of this study are to give insight into whether satisfaction with dementia case management and the development of caregiver burden depend on the organisational model. METHODS: A survey was carried out in regional dementia care networks in the Netherlands among 554 informal carers for people with dementia at the start of case management (response of 85 %), and one year later. Descriptive statistics and multilevel models were used to analyse the data. RESULTS: The satisfaction with the case manager was high in general (an average of 8.0 within a possible range of 1 to 10), although the caregiver burden did not decrease in the first year after starting with case management. No differences were found between the four organisational models regarding the development of caregiver burden. However, statistically significant differences (p < 0.05) were found regarding satisfaction: informal carers in the organisational model where case management is only available after formal diagnosis of dementia and is often a combined function had on average the lowest satisfaction scores. Nevertheless, the satisfaction of informal carers within all organisational models was high (ranging from 7.51 to 8.40 within a range of 1 to 10). CONCLUSIONS: Organisational features of case management seem to make little or no difference to the development in caregiver burden and the satisfaction of informal carers. Future research is needed to explore whether the individual characteristics of the case managers themselves are associated with case management outcomes.

Determinants of the intention to use e-Health by community dwelling older people.

BACKGROUND: In the future, an increasing number of elderly people will be asked to accept care delivered through the Internet. For example, health-care professionals can provide treatment or support via telecare. But do elderly people intend to use such so-called e-Health applications? The objective of this study is to gain insight into the intention of older people, i.e. the elderly of the future, to use e-Health applications. Using elements of the Unified Theory of Acceptance and Use of Technology (UTAUT), we hypothesized that their intention is related to the belief that e-Health will help (performance expectancy), the perceived ease of use (effort expectancy), the beliefs of important others (social influence), and the self-efficacy concerning Internet usage. METHODS: A pre-structured questionnaire was completed by 1014 people aged between 57 and 77 (response 67%). The hypothesized relationships were tested using nested linear regression analyses. RESULTS: If offered an e-Health application in the future, 63.1% of the respondents would definitely or probably use it. In general, people with a lower level of education had less intention of using e-Health. The majority of respondents perceived e-Health as easy to use (60.8%) and easy to learn (68.4%), items that constitute the scale for effort expectancy. Items in the performance expectancy scale generally scored lower: 45.8% perceived e-Health as useful and 38.2% perceived it as a pleasant way to interact. The tested model showed that expected performance and effort were highly related to intention to use e-Health. In addition, self-efficacy was related to intention to use while social influence was not. CONCLUSIONS: Acceptance of e-Health can be increased by informing people about the potential benefits of e-Health and letting them practice with the application. Special attention should be paid to people with less education and people who have not used the Internet before.

How technology in care at home affects patient self-care and self-management: a scoping review.

The use of technology in care at home has potential benefits such as improved quality of care. This includes greater focus on the patients' role in managing their health and increased patient involvement in the care process. The objective of this scoping review is to analyse the existing evidence for effects of technology in home-based care on patients' self-care and self-management. Using suitable search terms we searched the databases of Pubmed, Embase, Cochrane Library, Cinahl, Picarta and NIVEL dating from 2002 to 2012. Thirty-three studies (six review studies and twenty-seven individual studies) were selected. Effects were extracted from each study and were classified. In almost all the studies, the concepts self-care and self-management are not clearly defined or operationalized. Therefore, based on a meta-analysis, we made a new classification of outcome measures, with hierarchical levels: (1) competence (2) illness-management (3) independence (social participation, autonomy). In general, patient outcomes appear to be positive or promising, but most studies were pilot studies. We did not find strong evidence that technology in care at home has (a positive) effect on patient self-care and self-management according to the above classification. Future research is needed to clarify how technology can be used to maximize its benefits.

Informal caregivers of people with dementia: problems, needs and support in the initial stage and in subsequent stages of dementia: a questionnaire survey.

OBJECTIVE: The ageing of the population is expected to lead to an increase in the prevalence of dementia. Providing support to informal caregivers is essential to promote their wellbeing and prevent serious caregiver burden. The aim of the study is to investigate whether differences occur between the initial and later stages of dementia in terms of (1) problems experienced by informal caregivers in the provision of care, (2) use of professional support by persons with dementia, (3) informal caregivers' needs for additional professional support. METHODS: The data were collected within the framework of the Dutch National Dementia Program, which was instigated in 2005 by the Dutch Ministry of Health, Welfare and Sport to improve integrated care for people with dementia and their informal caregivers. This paper is based on data of a questionnaire survey among 1494 informal caregivers, collected between September 2007 and December 2008. RESULTS: Most informal caregivers (98-99%) experienced problems in caring for a person with dementia, irrespective of the stage of the illness process. In later stages, informal caregivers more often experienced problems in their social networks. Most dementia patients (87-94%) received ambulatory professional support. CONCLUSIONS: Since informal caregivers indicate a need for additional professional support in all stages of dementia, professional support should be provided during the entire illness process. Informal caregivers need advice on how to cope with symptoms of dementia, how to deal with behavior problems and receive more information about (early and advanced stages of) dementia and the supply of support.

Factors influencing the adoption of home telecare by elderly or chronically ill people: a national survey.

AIMS AND OBJECTIVES: The primary aim is to provide insight into client characteristics and characteristics of home telecare contacts, which may influence the adoption of home telecare. Secondary aim is to examine the applicability of four perceived attributes in Rogers' diffusion of innovations theory, which may influence the adoption: relative advantage, compatibility, complexity and observability. BACKGROUND: Western countries face strongly increasing healthcare demands. At the same time, a growing nursing shortage exists. The use of home telecare may be instrumental in improving independence and safety and can provide support to older and chronically ill people, but a precondition for its uptake is that clients consider it as a useful and helpful technological tool. DESIGN: A survey conducted among clients of seven home care organisations in the Netherlands connected to a home telecare system. METHODS: In 2007, a postal questionnaire was distributed to 468 older or chronically ill clients: 254 responded (54%). The data were analysed by regression techniques, employing a theoretical model. RESULTS: This study showed that clients' perceived attributes - relative advantage, compatibility, complexity and observability - have a significant effect on adoption of home telecare explaining 61% of the variance. The chance of adoption is higher when a client already receives long-term personal and/or nursing care, he/she lives alone and when there are fixed daily contacts via the home telecare system. The perception of possible benefits can still be enhanced. CONCLUSIONS: The concept of perceived attributes, derived from Rogers' diffusion of innovation theory, has been useful to explain clients' adoption of home telecare. RELEVANCE TO CLINICAL PRACTICE: Home care organisations can best focus on clients already in care and people living alone, in offering home telecare. Nurses, who aim to enhance the client's adoption of home telecare, have to take into account clients' perceived attributes of such new technology.

Costs and financial benefits of video communication compared to usual care at home: a systematic review.

We conducted a systematic review of video communication in home care to provide insight into the ratio between the costs and financial benefits (i.e. cost savings). Four databases (PUBMED, EMBASE, COCHRANE LIBRARY, CINAHL) were searched for studies on video communication for patients living at home (up to December 2009). Studies were only included when data about the costs of video communication as well as the financial benefits were presented. The methodological quality of the included studies was assessed. Nine studies, mainly conducted in the US, met the inclusion criteria. The methodological quality was poor, except for one study. Most studies (8 of the 9) did not demonstrate that the financial benefits were significantly greater than the costs of video communication. One study - the only one with a high methodological quality - found that costs for patients who received video communication were higher than for patients who received traditional care. The review found no evidence that the cost of implementing video communication in home care was lower than the resulting financial benefits. More methodologically well conducted research is needed.

Informal caregivers of persons with dementia, their use of and needs for specific professional support: a survey of the National Dementia Programme.

BACKGROUND: This paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO) and the Knowledge Centre on Ageing (Vilans), instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia. METHODS: In the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law) and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly) and support needs on the other hand. RESULTS: Almost all informal caregivers (92.6%) received some professional support. However, two thirds (67.4%) indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law): spouses relatively often need emotional support and sons or daughters (in-law) more often need information and coordination of dementia care. CONCLUSIONS: Most of the informal caregivers report that they need additional information and advice, e.g. about how to cope with behavioral problems of their relative, about the progression of the illness trajectory, emotional support and coordination of dementia care. Future support programmes, e.g. in the field of case management, should address the specific needs of informal caregivers.

Development and initial testing of an instrument to establish eating profiles of clients in nursing homes or elderly homes.

"Eating profiles" can be defined as types of clients distinguished by combinations of food preferences, consumption patterns, and preferences for ambiance. The purpose of this article is to describe the development and initial testing of an instrument to establish eating profiles of residents of nursing homes or elderly homes. We constructed a 35-item, 4-subscale questionnaire. This self-administered, usable instrument derived five eating profiles from clients' perspectives. Insight in eating profiles is important for facility managers to ascertain that the food, dinner service, and ambiance are adequately tailored to the residents' preferences.