Informal Caregivers Survey Minimum DataSet Research Articles

Multimorbidity patterns in older persons and their association with self-reported quality of life and limitations in activities of daily living

BackgroundAs populations age, multimorbidity (the presence of two or more chronic morbidities) is increasingly more common. These evolving demographics demand further research into the identification of morbidity patterns in different settings as well as the longitudinal effects of these patterns. MethodsProspectively collected data on 12,755 older persons aged 65+ years were derived from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS, www.topics-mds.eu). Latent class analyses were performed to identify unobserved relationship patterns between morbidities in older persons. Using linear mixed models, the average difference in health-related quality of life (EQ-5D) and general quality of life scores (Cantril's Self Anchoring Ladder) as well as limitations in Activities of Daily Living and Instrumental Activities of Daily Living (ADL/IADL) were examined over a 12-month period. ResultsFive multimorbidity patterns were identified: sensory (n = 3882), cardio-metabolic (n = 2627), mental health (n = 920), osteo-articular (n = 4486), and system decline (n = 840). Relative to older persons in the sensory group, multimorbidity patterns did not have a strong effect on health-related quality of life, general quality of life or ADL/IADLs over a one-year period. ConclusionsThe observed multimorbidity patterns are similar to others based on different methodologies and study populations. When examining the effect of such patterns on quality of life, the EQ-5D and Cantril's Ladder may be insufficient outcome measures. Further investigations into the prognostic value of morbidity patterns would be of benefit.

Older persons are frailer after an emergency care visit to the out-of-hours general practitioner cooperative in the Netherlands: a cross-sectional descriptive TOPICS-MDS study

BackgroundIn the Netherlands, community-dwelling older people with primary care emergency problems contact the General Practitioner Cooperative (GPC) after hours. However, frailty remains an often unobserved hazard with adverse health outcomes. The aim of this study was to provide insight into differences between older persons with or without GPC emergency care visits (reference group) regarding frailty and healthcare use.MethodsA cross-sectional descriptive study design was based on data from the public data repository of The Older Persons and Informal Caregivers Survey Minimum Dataset (TOPICS-MDS). Frailty in older persons (65+ years, n = 32,149) was measured by comorbidity, functional and psychosocial aspects, quality of life and a frailty index. Furthermore, home care use and hospital admissions of older persons were identified. We performed multilevel logistic and linear regression analyses. A random intercept model was utilised to test differences between groups, and adjustment factors (confounders) were used in the multilevel analysis.ResultsCompared to the reference group, older persons with GPC contact were frailer in the domain of comorbidity (mean difference 0.52; 95% CI 0.47–0.57, p < 0.0001) and functional limitations (mean difference 0.53; 95% CI 0.46–0.60, p < 0.0001), and they reported less emotional wellbeing (mean difference − 4.10; 95% CI -4.59- -3.60, p < 0.0001) and experienced a lower quality of life (mean difference − 0.057; 95% CI -0.064- -0.050, p < 0.0001). Moreover, older persons more often reported limited social functioning (OR = 1.50; 95% CI 1.39–1.62, p < 0.0001) and limited perceived health (OR = 1.50, 95% CI 1.39–1.62, p < 0.0001). Finally, older persons with GPC contact more often used home care (OR = 1.37; 95% CI 1.28–1.47, p < 0.0001) or were more often admitted to the hospital (OR = 2.88; 95% CI 2.71–3.06, p < 0.0001).ConclusionsOlder persons with out-of-hours GPC contact for an emergency care visit were significantly frailer in all domains and more likely to use home care or to be admitted to the hospital compared to the reference group. Potentially frail older persons seemed to require adequate identification of frailty and support (e.g., advanced care planning) both before and after a contact with the out-of-hours GPC.

Recommendations of older adults on how to use the PROM 'TOPICS-MDS' in healthcare conversations: A Delphi study.

In shared decision making, the exploration of preferred personal health outcomes is important. Patient-reported outcome measures (PROMs) provide input for discussions between patients and healthcare professionals. The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) PROM is a multidimensional questionnaire on the physical and mental health and wellbeing of older adults. This study investigates how the TOPICS-MDS could be used in individual healthcare conversations. We explored views of older adults regarding 1) whether the health domains they want to discuss are included in the TOPICS-MDS and 2) the comprehensibility of the TOPICS-MDS for healthcare conversations with older adults. A three-round Delphi study was conducted. A total of 57 older adults participated in the study, the mean (SD) age was 71.5 (8.5) years, and 78.9% of the participants were female. The participants were divided into four panels based on educational level and cultural background. We used online questionnaires and focus groups. Consensus was pre-defined to be the point when ≥75% of the participants agreed that a domain was important or very important (scored on a 5-point Likert scale). The inter-expert agreement was computed for Round 1 and 3 with Kendall's W. Round 2 was a focus-group. Qualitative data were analyzed by content analysis. Older adults considered 'functional limitations', 'emotional wellbeing', 'social functioning' and 'quality of life' to be important domains of the TOPICS-MDS to discuss in healthcare conversations. The participants added 'coping with stress', 'dealing with health conditions and the effects on life' as extra domains for healthcare conversations. Challenges regarding the comprehensibility of the TOPICS-MDS included difficult words and lengthy or sensitive questions. Questions that included multiple topics were difficult to understand. The TOPICS-MDS covers the domains of life that older adults value as important to discuss with healthcare professionals, and two additional domains were identified. For older adults with a low level of education or a culturally diverse background, the TOPICS-MDS needs to be adjusted for comprehensibility.

Ethnic differences in frailty: a cross-sectional study of pooled data from community-dwelling older persons in the Netherlands

ObjectiveFew European studies examined frailty among older persons from diverse ethnic backgrounds. We aimed to examine the association of ethnic background with frailty. In addition, we explored the association of...

Trajectories of Limitations in Instrumental Activities of Daily Living in Frail Older Adults With Vision, Hearing, or Dual Sensory Loss.

This study investigated the trajectories of decline in individual instrumental activities of daily living (IADL) with aging and the effect of hearing loss, vision loss, or dual sensory loss on these trajectories in community-living frail older persons. This longitudinal population-based study was conducted in 9,319 community-living frail Dutch persons aged 60 years and older. Self-reported hearing loss, vision loss, or dual sensory loss and nine IADL were assessed in 15 studies of the Dutch National Care for the Elderly Program (The Older Persons and Informal Caregivers Survey Minimum Dataset). Probabilities of limitations in IADL, odds ratios (per 5 years) for binary, and rate ratios (per 5 years) for score outcomes were calculated using mixed logistic and negative binomial models with age as the underlying timescale, stratified by sensory loss, and corrected for confounders. At baseline, the number of IADL limitations was higher in dual sensory loss (2.00 [interquartile range 1.00-4.00]) and vision loss (2.00 [interquartile range 1.00-4.00]) compared to no sensory loss (1.00 [interquartile range 0.00-2.00]) or hearing loss (1.00 [interquartile range 0.00-3.00]). Trajectories of individual IADL showed an increase in limitations in all IADL with age. Household tasks, traveling, shopping, preparing a meal, and walking showed the most rapid decline. Handling finances, traveling, and walking followed a different pattern of decline based on sensory loss status. The age effect on limitations in IADL appears to be similar across all types of sensory loss, with the exception of handling finances, traveling, and walking. At baseline, persons with self-reported sensory loss had higher levels of self-reported functional limitations. Trajectories depict a decline in IADL competence with age.

Socioeconomic inequalities in frailty and frailty components among community-dwelling older citizens.

BackgroundSo far, it has not yet been studied whether socioeconomic status is associated with distinct frailty components and for which frailty component this association is the strongest. We aimed to examine the association between socioeconomic status and frailty and frailty components. In addition we assessed the mediating effect of the number of morbidities on the association between socioeconomic status and other frailty components.MethodsThis is a cross-sectional study of pooled data of The Older Persons and Informal Caregivers Survey Minimum DataSet in the Netherlands among community-dwelling persons aged 55 years and older (n = 26,014). Frailty was measured with a validated Frailty Index that consisted of 45 items. The Frailty Index contained six components: morbidities, limitations in activities of daily living (ADL), limitations in instrumental ADL (IADL), health-related quality of life, psychosocial health and self-rated health. Socioeconomic indicators used were education level and neighbourhood socioeconomic status.ResultsPersons with primary or secondary education had higher overall frailty and frailty component scores compared to persons with tertiary education (P < .001). Lower education levels were most consistently associated with higher overall frailty, more morbidities and worse self-rated health (P < .05 in all age groups). The strongest association was found between primary education and low psychosocial health for persons aged 55–69 years and more IADL limitations for persons aged 80+ years. Associations between neighborhood socioeconomic status and frailty (components) also showed inequalities, although less strong. The number of morbidities moderately to strongly mediated the association between socioeconomic indicators and other frailty components.ConclusionThere are socioeconomic inequalities in frailty and frailty components. Inequalities in frailty, number of morbidities and self-rated health are most consistent across age groups. The number of morbidities a person has play an important role in explaining socioeconomic inequalities in frailty and should be taken into account in the management of frailty.

PREDICTING FUNCTIONAL DECLINE IN COMMUNITY-LIVING OLDER PEOPLE WITH A LOW SOCIOECONOMIC STATUS

Maintaining independence is the most important goal of the majority of older people. The onset of disability in activities of daily living is one of the greatest threats to the ability of older people to live independently. Older people with a low socioeconomic status (SES) are at high risk of functional decline. It is unclear what predicts functional decline in older people with a low SES. The aim of this study was to determine predictors of 12-month functional decline in community-living older people with low SES in the Netherlands. Functional decline was defined as the inability to perform (instrumental) activities of daily living. A prognostic multicentre study was conducted, using data from The Dutch Older Persons and Informal Caregivers Survey Minimum DataSet. A multivariable logistic regression model was fitted, using a stepwise backward selection process. Performance of the model was expressed by discrimination, calibration and accuracy. A total of 4.370 participants were included. The mean age of the participants was 80 years and 58.9% were female. Functional decline was present in 1486 participants (34.0%). Ten predictors were independently associated with the outcome. Dementia was the strongest predictor (OR 1.83, 95% CI 1.04–3.23). Other predictors were age, education, poor health, quality of life rate, arthrosis/arthritis, hearing problems, anxiety/panic disorder, pain and less social activities. The final model showed an acceptable discrimination (C-statistic 0.69, 95% CI 0.67–0.70), calibration (Hosmer-Lemeshow p-value 0.33) and accuracy (Brier score 0.20). Further research is needed to examine how functional decline can be ameliorated in this population.

Explaining the Gender Gap in the Caregiving Burden of Partner Caregivers.

ObjectivesWe examine gender differences in the experienced burden of partner caregivers using the stress-appraisal model. Gender differences can be explained by differences in conditions of burden (primary stressors, help from others, hours of caregiving, and secondary stressors) and how strong their effects are.MethodThe data are from the Netherlands’ Older Persons and Informal Caregivers Survey—Minimum Data Set (N = 1,611 caregivers). We examine mediation and moderation effects using structural equation modeling.ResultsWomen experience greater partner caregiver burden than men, which is related to women experiencing more secondary stressors (relational and financial problems, problems combining different tasks). For women and men alike, there is a positive association between burden and more primary stressors (partner’s care need indicated by health impairment), help from other caregivers, and secondary stressors. For male caregivers, caregiving intensity also contributes to a greater burden.DiscussionThis study corroborates the structural impact of gender on the conditions of as well as their effects on the partner caregiver burden. Reducing the hours of caregiving for male caregivers in severe care situations and helping female and male caregivers deal emotionally with the caregiving situation can reduce the partner caregiver burden.

Caregiving to Older Adults: Determinants of Informal Caregivers' Subjective Well-being and Formal and Informal Support as Alleviating Conditions.

In response to concerns about the sustainability of health care systems that increasingly rely on informal care, we first investigate explanations of informal caregivers' subjective well-being: primary stressors (care-receivers' cognitive impairment, functional disability, and problem behavior), primary appraisal (hours of informal caregiving), and secondary appraisal (burden). Second, we investigate the extent that formal (professional home care) and informal support (from other caregivers/volunteers and from family/friends) alleviate well-being losses due to informal care provision. We modified the stress-appraisal model to explicitly include buffering effects of support. We analyzed 4,717 dyads of Dutch informal caregivers and their older care-receivers from the Older Persons and Informal Caregivers Survey Minimum DataSet with multilevel techniques. Caregivers' subjective well-being was directly correlated with burden, hours of informal caregiving, and problem behavior of care-receivers. It was indirectly correlated with care-receivers' cognitive impairment and functional disability. Formal and informal support weakened the positive relationship between primary stressors and caregiving hours. Modification of the stress-appraisal model appears useful as it identifies which sources of support buffer at which stages of the stress process. Findings suggest that cutbacks in formal/professional care may aggravate negative well-being outcomes of informal caregiving and compromise informal caregivers' labor market participation.

Rasch analysis reveals comparative analyses of activities of daily living/instrumental activities of daily living summary scores from different residential settings is inappropriate

ObjectivesTo internally validate a 15-item dichotomous activities of daily living (ADL) and instrumental activities of daily living (IADL) index. Study Design and SettingData were extracted from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS). Using Rasch modeling, six aspects of the ADL/IADL scale were assessed: (1) overall fit, (2) internal consistency, (3) individual item and person fit, (4) local dependency, (5) targeting, and (6) differential item functioning (DIF) (RUMM 2030). All analyses were stratified by living situation [community-dwelling (n = 21,926) or residential care facility (n = 2,458)]. ResultsIn both settings, “eating” was the easiest activity on the scale and “performing household tasks” was the most difficult activity. However, based on the location on the logit scale, the level of difficulty for certain items varied between residential settings, suggesting summary scores are not equivalent between these settings. DIF by gender and age group was observed for several items, indicating potential measurement bias in the scale. ConclusionUnless adjustments are undertaken, ADL/IADL summary scores retrieved from older persons residing in the community or residential care facilities should not be directly compared. This 15-item scale is poorly targeted for a community-dwelling older population, underscoring the need for items with improved discriminative ability.

Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)

Validity is a contextual aspect of a scale which may differ across sample populations and study protocols. The objective of our study was to validate the Care-Related Quality of Life Instrument (CarerQol) across two different study design features, sampling framework (general population vs. different care settings) and survey mode (interview vs. written questionnaire). Data were extracted from The Older Persons and Informal Caregivers Minimum DataSet (TOPICS-MDS, www.topics-mds.eu ), a pooled public-access data set with information on >3,000 informal caregivers throughout the Netherlands. Meta-correlations and linear mixed models between the CarerQol's seven dimensions (CarerQol-7D) and caregiver's level of happiness (CarerQol-VAS) and self-rated burden (SRB) were performed. The CarerQol-7D dimensions were correlated to the CarerQol-VAS and SRB in the pooled data set and the subgroups. The strength of correlations between CarerQol-7D dimensions and SRB was weaker among caregivers who were interviewed versus those who completed a written questionnaire. The directionality of associations between the CarerQol-VAS, SRB and the CarerQol-7D dimensions in the multivariate model supported the construct validity of the CarerQol in the pooled population. Significant interaction terms were observed in several dimensions of the CarerQol-7D across sampling frame and survey mode, suggesting meaningful differences in reporting levels. Although good scientific practice emphasises the importance of re-evaluating instrument properties in individual research studies, our findings support the validity and applicability of the CarerQol instrument in a variety of settings. Due to minor differential reporting, pooling CarerQol data collected using mixed administration modes should be interpreted with caution; for TOPICS-MDS, meta-analytic techniques may be warranted.

The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative

IntroductionIn 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 MethodsA 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).ResultsBetween 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.DiscussionTOPICS-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.