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Objectives: The aim of the current study was to investigate the health-related quality of life (HRQol) of the family caregiver in MCI, explore possible determinants and study possible differences with mild dementia., Methods: This secondary data analysis included 145 persons with MCI and 154 persons with dementia and their family caregivers from two Dutch cohort studies. HRQoL was measured with the VAS of the EuroQol-5D-3L version. Regressions analyses were conducted to examine potential demographic and clinical determinants of the caregiver's HRQoL., Results: The mean EQ5D-VAS in family caregivers of persons with MCI was 81.1 (SD 15.7), and did not significantly differ from family caregivers in mild dementia (81.9 (SD 13.0)). In MCI, patient measurements were not significantly associated with caregiver mean EQ5D-VAS. Concerning caregiver characteristics, being a spouse and a lower educational level were associated with a lower mean EQ5D-VAS (in a multiple linear regression model: unstandardized B -8.075, p  = 0.013 and unstandardized B -6.162, p  = 0.037 resp.). In mild dementia, the NPI item irritability showed an association with caregiver EQ5D-VAS in bivariate linear regression analyses., Conclusion: Results indicate that especially family caregiver characteristics seem to influence family caregiver HRQoL in MCI. Future research should include other potential determinants such as burden, coping strategies and relationship quality.

Background: The Older Persons and Informal Caregivers Minimum Data Set (TOPICS-MDS) is a standardized data set that was developed to evaluate the quality of multidimensional geriatric care. There is an inherent need to reduce the number of TOPICS-MDS survey items to core outcomes to allow it to be more easily applied as a patient-reported outcome measure in clinical settings., Objectives: To create a TOPICS-short form (TOPICS-SF) and examine its validity., Methods: Data in the TOPICS-MDS from persons aged 65 years and older in the Netherlands were used for the following analyses. Multiple linear regression analyses were performed to select the items and to derive domain weights of TOPICS-SF. A priori hypotheses were made on the basis of psychometric properties of the full-length TOPICS-MDS preference-weighted score (TOPICS-CEP). The validity of TOPICS-SF was evaluated by 1) examining the meta-correlation of the TOPICS-SF score with TOPICS-CEP and two quality-of-life measures, that is, the Cantril Ladder score and the EuroQol five-dimensional questionnaire utility index, and 2) performing mixed multiple regression of TOPICS-SF scores across key sociodemographic characteristics., Results: TOPICS-SF scores were strongly correlated with the TOPICS-CEP (r = 0.96) and had stronger correlation with the EuroQol five-dimensional questionnaire utility index compared with the Cantril Ladder (r = 0.61 and 0.38, respectively). TOPICS-SF scores were higher among older persons who were married, living independently, and having higher levels of education., Conclusions: We have developed the 22-item TOPICS-SF and demonstrated its validity, supporting its use as a patient-reported outcome measure in geriatric care., (Copyright © 2018 ISPOR --The Professional Society for Health Economics and Outcomes Research. Published by Elsevier Inc. All rights reserved.)

Background: Informal care is essential for many people with dementia (PwD), but it often results in a considerable burden for the caregiver. The perseverance time instrument integrates the aspect of perceived burden with the caregiver's capacity to cope with the burden, in contrast to most available instruments, which measure solely the burden of caregiving. The aim of this study was to extend insight into psychometric properties of the perseverance time instrument, specifically the construct validity, responsiveness, and predictive validity, within the population of informal caregivers for PwD., Methods: Data from two studies among informal caregivers of community-dwelling PwD in the Netherlands were used. The first study included 198 caregivers from a single region in the Netherlands and lasted 1 year. The second was a cross-sectional nationwide study with 166 caregivers for PwD. Questionnaires of both studies included questions regarding demographics and informal care, perseverance time, and other informal caregiver outcomes (Caregiver Strain Index, Self-rated Burden scale, Care-related Quality of Life instrument, and visual analogue scale health scores). Construct validity and responsiveness were assessed using a hypothesis-testing approach. The predictive validity of demographic characteristics and perseverance time for living situation after 1 year (living at home, institutionalized, or deceased) was assessed with multivariable multinomial regression., Results: All but one of the hypotheses regarding construct validity were met. Three of five hypotheses regarding responsiveness were met. Perseverance time scores at baseline were associated with living situation after 1 year (p < 0.01), unlike age, sex, and relationship with PwD. Perseverance time strongly increased predictive power for living situation after 1 year (c-index between 0.671 and 0.775) in addition to demographic characteristics., Conclusions: This study supports previous findings regarding the construct validity of the perseverance time instrument and adds new evidence of good construct validity, responsiveness, and predictive validity. The predictive power of perseverance time scores for living situation exceeds the predictive power of other burden measures and indicates informal care as an important factor for maintaining the patient at home.

Background: Preference-weighted multi-faceted endpoints have the potential to facilitate comparative effectiveness research that incorporates patient preferences. The Older Persons and Informal Caregivers Survey-Composite endpoint (TOPICS-CEP) is potentially a valuable outcome measure for evaluating interventions in geriatric care as it combines multiple outcomes relevant to older persons in a single metric. The objective of this study was to validate TOPICS-CEP across different study settings (general population, primary care and hospital)., Methods: Data were extracted from TOPICS Minimum Dataset (MDS), a pooled public-access national database with information on older persons throughout the Netherlands. Data of 17,603 older persons were used. Meta-correlations were performed between TOPICS-CEP indexed scores, EuroQol5-D utility scores and Cantril's ladder life satisfaction scores. Mixed linear regression analyses were performed to compare TOPICS-CEP indexed scores between known groups, e.g. persons with versus without depression., Results: In the complete sample and when stratified by study setting TOPICS-CEP and Cantril's ladder were moderately correlated, whereas TOPICS-CEP and EQ-5D were highly correlated. Higher mean TOPICS-CEP scores were found in persons who were: married, lived independently and had an education at university level. Moreover, higher mean TOPICS-CEP scores were found in persons without dementia, depression, and dizziness with falls, respectively. Similar results were found when stratified by subgroup., Conclusion: This study supports that TOPICS-CEP is a robust measure which can potentially be used in broad settings to identify the effect of intervention or of prevention in elderly care.

Background: The Older Persons and Informal Caregivers Survey-Minimum Dataset (TOPICS-MDS) collects uniform information from research projects funded under the Dutch National Care for the Elderly Programme. To compare the effectiveness of these projects a preference-weighted outcome measure that combined multidimensional TOPICS-MDS outcomes into a composite endpoint (TOPICS-CEP) was developed based on the health state preferences of older persons and informal caregivers., Objectives: To derive preference weights for TOPICS-CEP's components based on health state preferences of healthcare professionals and to investigate whether these weights differ between disciplines and differ from those of older persons and informal caregivers., Materials and Methods: Vignette studies were conducted. Participants assessed the general wellbeing of older persons described in vignettes on a scale (0-10). Mixed linear analyses were used to obtain and compare the preference weights of the eight TOPICS-CEP components: morbidities, functional limitations, emotional wellbeing, pain experience, cognitive problems, social functioning, self-perceived health, and self-perceived quality of life (QOL)., Results: Overall, 330 healthcare professionals, 124 older persons and 76 informal caregivers participated. The preference weights were not significantly different between disciplines. However, the professionals' preference weights differed significantly from those of older persons and informal caregivers. Morbidities and functional limitations were given more weight by older persons and informal caregivers than by healthcare professionals [difference between preference weights: 0.12 and 0.07] while the opposite was true for pain experience, social functioning, and self-perceived QOL [difference between preference weights: 0.13, 0.15 and 0.26]., Conclusion: It is important to recognize the discrepancies between the health state preferences of various stakeholders to (1) correctly interpret results when studying the effectiveness of interventions in elderly care and (2) establish appropriate healthcare policies. Furthermore, we should strive to include older persons in our decision making process through a shared decision making approach.

Background: The Older Persons and Informal Caregivers Survey Minimal Dataset's (TOPICS-MDS) questionnaire which measures relevant outcomes for elderly people was successfully incorporated into over 60 research projects of the Dutch National Care for the Elderly Programme. A composite endpoint (CEP) for this instrument would be helpful to compare effectiveness of the various intervention projects. Therefore, our aim is to establish a CEP for the TOPICS-MDS questionnaire, based on the preferences of elderly persons and informal caregivers., Methods: A vignette study was conducted with 200 persons (124 elderly and 76 informal caregivers) as raters. The vignettes described eight TOPICS-MDS outcomes of older persons (morbidity, functional limitations, emotional well-being, pain experience, cognitive functioning, social functioning, self-perceived health and self-perceived quality of life) and the raters assessed the general well-being (GWB) of these vignette cases on a numeric rating scale (0-10). Mixed linear regression analyses were used to derive the preference weights of the TOPICS-MDS outcomes (dependent variable: GWB scores; fixed factors: the eight outcomes; unstandardized coefficients: preference weights)., Results: The mixed regression model that combined the eight outcomes showed that the weights varied from 0.01 for social functioning to 0.16 for self-perceived health. A model that included "informal caregiver" showed that the interactions between this variable and each of the eight outcomes were not significant (p > 0.05)., Conclusion: A preference-weighted CEP for TOPICS-MDS questionnaire was established based on the preferences of older persons and informal caregivers. With this CEP optimal comparing the effectiveness of interventions in older persons can be realized.

Introduction: In 2008, the Ministry of Health, Welfare and Sport commissioned the National Care for the Elderly Programme. While numerous research projects in older persons' health care were to be conducted under this national agenda, the Programme further advocated the development of The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) which would be integrated into all funded research protocols. In this context, we describe TOPICS data sharing initiative (www.topics-mds.eu)., Materials and Methods: A working group drafted TOPICS-MDS prototype, which was subsequently approved by a multidisciplinary panel. Using instruments validated for older populations, information was collected on demographics, morbidity, quality of life, functional limitations, mental health, social functioning and health service utilisation. For informal caregivers, information was collected on demographics, hours of informal care and quality of life (including subjective care-related burden)., Results: Between 2010 and 2013, a total of 41 research projects contributed data to TOPICS-MDS, resulting in preliminary data available for 32,310 older persons and 3,940 informal caregivers. The majority of studies sampled were from primary care settings and inclusion criteria differed across studies., Discussion: TOPICS-MDS is a public data repository which contains essential data to better understand health challenges experienced by older persons and informal caregivers. Such findings are relevant for countries where increasing health-related expenditure has necessitated the evaluation of contemporary health care delivery. Although open sharing of data can be difficult to achieve in practice, proactively addressing issues of data protection, conflicting data analysis requests and funding limitations during TOPICS-MDS developmental phase has fostered a data sharing culture. To date, TOPICS-MDS has been successfully incorporated into 41 research projects, thus supporting the feasibility of constructing a large (>30,000 observations), standardised dataset pooled from various study protocols with different sampling frameworks. This unique implementation strategy improves efficiency and facilitates individual-level data meta-analysis.

Background: Patient involvement in clinical decision making is increasingly advocated. Although older patients may be more reluctant to become involved, most do appreciate being informed. However, knowledge about their experiences with and preferences for receiving information is limited, and even less is known about these topics for frail older people., Objective: To explore the experiences of frail older people and informal caregivers with receiving information from health care professionals as well as their preferences for receiving information., Methods: We conducted semi-structured interviews with frail older people (n = 11, 65-90 years) and informal caregivers (n = 11, 55-87 years). Interviews were transcribed verbatim and analysed using a grounded theory approach., Results: Frail older people and informal caregivers varied in their information needs and discussed both positive and negative experiences with receiving information. They preferred receiving verbal information from their physician during the consultation; yet would appreciate receiving brief, clearly written information leaflets in addition. They employed several strategies to enhance the information provided, i.e. advocacy, preparing for a consultation and searching their own information. Contextual factors for receiving information, such as having enough time and having a good relationship with professionals involved, were considered of great importance., Conclusions: Participants described a wide range of experiences with and preferences for receiving information. However, even if the information provided would meet all their preferences, this would be of limited significance if not provided within the context of an ongoing trusting relationship with a professional, such as a GP or practice nurse, who genuinely cared for them.

Background: A number of studies have examined the effects of home visits and showed inconsistent results on physical functioning, institutionalisation, and mortality. Despite continuing interest from professionals in home visits for older people, reports on older people's needs and preferences for such visits are scarce., Aim: This qualitative study aims to explore the views and needs of community-dwelling frail older people concerning home visits., Design and Setting: A qualitative study including interviews with frail older persons and their informal caregivers living in the area of Nijmegen, the Netherlands., Method: Semi-structured interviews were conducted with frail older people and informal caregivers. A grounded theory approach was used for data-analysis., Results: Eleven frail older people and 11 informal caregivers were included. Most participants emphasised the importance of home visits for frail older people. They felt that it would give older people the personal attention they used to receive from GPs but miss nowadays. Most stated that this would give them more trust in GPs. Participants stated that trust is one of the most important factors in a good patient-professional relationship. Further, participants preferred home visits to focus on the psychosocial context of the patient. They stated that more knowledge of the psychosocial context and a good patient-professional relationship would enable the professional to provide better and more patient-centred care., Conclusion: Patients' expectations of home visits are quite different from the actual purpose of home visiting programmes; that is, care and wellbeing versus cure and prevention. This difference may partly explain why the effectiveness of home visits remains controversial. Future studies on home visits should involve patients in the development of home visiting programmes.

Objective: To assess whether a multifactorial fall prevention program was more effective than usual geriatric care in preventing falls and reducing fear of falling in frail community-dwelling older fallers, with and without cognitive impairment, and in alleviating subjective caregiver burden in caregivers., Design, Setting, and Participants: A randomized, 2 parallel-group, single-blind, multicenter trial conducted in 36 pairs of frail fallers, who were referred to a geriatric outpatient clinic after at least 1 fall in the past 6 months, and their informal caregivers., Intervention: Groups of 5 pairs of patients and caregivers received 10 twice-weekly, 2-hour sessions with physical and psychological components and a booster session., Measurements: The primary outcome was the fall rate during a 6-month follow-up. Additionally, we measured fear of falling and subjective caregiver burden. Data on the secondary outcome measures were collected at baseline, directly after, and at 3 and 6 months after the last session of the intervention., Results: Directly after the intervention and at the long-term evaluation, the rate of falls in the intervention group was higher than in the control group, although these differences were not statistically significant (RR = 7.97, P = .07 and RR = 2.12, P = .25, respectively). Fear of falling was higher in the intervention group, and subjective caregiver burden did not differ between groups., Conclusion: Although we meticulously developed this pairwise multifactorial fall prevention program, it was not effective in reducing the fall rate or fear of falling and was not feasible for caregivers, as compared with regular geriatric care. Future research initiatives should be aimed at how to implement the evidence-based principles of geriatric fall prevention for all frail fallers rather than developing more complex interventions for the frailest., (Copyright © 2011 American Medical Directors Association. Published by Elsevier Inc. All rights reserved.)

Objective: caregiver effects of geriatric care models focusing primarily at the patient have not been consistently studied. We studied caregiver effects of a nurse-led comprehensive geriatric evaluation and management (GEM) programme for community-dwelling frail older people that showed-in a randomised comparison with usual care--health-related quality of life benefits for the care receivers., Methods: this randomised trial included 110 caregiver/patient dyads who were followed up for 6 months. Primary analyses were intention-to-treat analyses of caregiver burden assessed with Zarit Burden Interview (ZBI; 0-88; higher means more burden). Preplanned subgroup analyses were conducted for cognition, living arrangement and patient/caregiver co-residence., Results: overall, perceived caregiver burden showed no significant differences between study groups in changes over time. However, perceived burden was at baseline more than eight points higher in caregivers sharing a household with patients (n = 23) compared to caregivers living separately (n = 87). The intervention performed better in caregivers living together with the patient than in caregivers living separately (P for interaction = 0.04). Co-resident caregivers experienced six-Zarit point improvement compared with four-point deterioration in the non-co-resident caregivers., Conclusions: GEM at home benefited patients, but maybe not caregivers. Caregiver effects are related to whether caregivers live with the patient or not.

Background: Due to fragmentation of care, continuity of care is often limited in the care provided to frail older people. Further, frail older people are not always enabled to become involved in their own care. Therefore, we developed the Health and Welfare Information Portal (ZWIP), a shared Electronic Health Record combined with a communication tool for community-dwelling frail older people and primary care professionals. This article describes the process evaluation of its implementation, and aims to establish (1) the outcomes of the implementation process, (2) which implementation strategies and barriers and facilitators contributed to these outcomes, and (3) how its future implementation could be improved. Methods: Mixed methods study, consisting of (1) a survey among professionals (n = 118) and monitoring the use of the ZWIP by frail older people and professionals, followed by (2) semi-structured interviews with purposively selected professionals (n = 12). Results: 290 frail older people and 169 professionals participated in the ZWIP. At the end of the implementation period, 55% of frail older people and informal caregivers, and 84% of professionals had logged on to their ZWIP at least once. For professionals, the exposure to the implementation strategies was generally as planned, they considered the interprofessional educational program and the helpdesk very important strategies. However, frail older people's exposure to the implementation strategies was less than intended. Facilitators for the ZWIP were the perceived need to enhance interprofessional collaboration and the ZWIP application being user-friendly. Barriers included the low computer-literacy of frail older people, a preference for personal communication and limited use of the ZWIP by other professionals and frail older people. Interviewees recommended using the ZWIP for other target populations as well and adding further strategies that may help frail older people to feel more comfortable with computers and the ZWIP. Conclusions: This study describes the implementation process of an innovative e-health intervention for community-dwelling frail older people, informal caregivers and primary care professionals. As e-health is an important medium for overcoming fragmentation of healthcare and facilitating patient involvement, but its adoption in everyday practice remains a challenge, the positive results of this implementation are promising. [ABSTRACT FROM AUTHOR]

Background: Older people suffering from frailty often receive fragmented chronic care from multiple professionals. According to the literature, there is an urgent need for coordination of care. Objective: The objective of this study was to investigate the effectiveness of an online health community (OHC) intervention for older people with frailty aimed at facilitating multidisciplinary communication. Methods: The design was a controlled before-after study with 12 months follow-up in 11 family practices in the eastern part of the Netherlands. Participants consisted of frail older people living in the community requiring multidisciplinary (long-term) care. The intervention used was the health and welfare portal (ZWIP): an OHC for frail elderly patients, their informal caregivers and professionals. ZWIP contains a secure messaging system supplemented by a shared electronic health record. Primary outcomes were scores on the Instrumental Activities of Daily Living scale (IADL), mental health, and social activity limitations. Results: There were 290 patients in the intervention group and 392 in the control group. Of these, 76/290 (26.2%) in the intervention group actively used ZWIP. After 12 months follow-up, we observed no significant improvement on primary patient outcomes. ADL improved in the intervention group with a standardized score of 0.21 (P=.27); IADL improved with 0.50 points, P=.64. Conclusions: Only a small percentage of frail elderly people in the study intensively used ZWIP, our newly developed and innovative eHealth tool. The use of this OHC did not significantly improve patient outcomes. This was most likely due to the limited use of the OHC, and a relatively short follow-up time. Increasing actual use of eHealth intervention seems a precondition for large-scale evaluation, and earlier adoption before frailty develops may improve later use and effectiveness of ZWIP. [ABSTRACT FROM AUTHOR]

Background: Current health care systems are not optimally designed to meet the needs of our aging populations. First, the fragmentation of care often results in discontinuity of care that can undermine the quality of care provided. Second, patient involvement in care decisions is not sufficiently facilitated. Objective: To describe the development and the content of a program aimed at: (1) facilitating self-management and shared decision making by frail older people and informal caregivers, and (2) reducing fragmentation of care by improving collaboration among professionals involved in the care of frail older people through a combined multidisciplinary electronic health record (EHR) and personal health record (PHR). Methods: We used intervention mapping to systematically develop our program in six consecutive steps. Throughout this development, the target populations (ie, professionals, frail older people, and informal caregivers) were involved extensively through their participation in semi-structured interviews and working groups. Results: We developed the Health and Welfare Information Portal (ZWIP), a personal, Internet-based conference table for multidisciplinary communication and information exchange for frail older people, their informal caregivers, and professionals. Further, we selected and developed methods for implementation of the program, which included an interdisciplinary educational course for professionals involved in the care of frail older people, and planned the evaluation of the program. Conclusions: This paper describes the successful development and the content of the ZWIP as well as the strategies developed for its implementation. Throughout the development, representatives of future users were involved extensively. Future studies will establish the effects of the ZWIP on self-management and shared decision making by frail older people as well as on collaboration among the professionals involved. [ABSTRACT FROM AUTHOR]