The Older Persons And Informal Caregivers Survey Minimum DataSet Research Articles

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...

Correction: Examining the construct and known-group validity of a composite endpoint for The Older Persons and Informal Caregivers Survey Minimum Data Set (TOPICS-MDS); A large-scale data sharing initiative.

[This corrects the article DOI: 10.1371/journal.pone.0173081.].

Examining the construct and known-group validity of a composite endpoint for The Older Persons and Informal Caregivers Survey Minimum Data Set (TOPICS-MDS); A large-scale data sharing initiative.

BackgroundPreference-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).MethodsData 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.ResultsIn 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.ConclusionThis 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.

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 feasibility and validity of a preference-weighted composite endpoint to establish value in geriatric care

Background As part of the Dutch National Care for the Elderly Programme, The Older Persons and Informal Caregivers Survey Minimum Data Set (TOPICS-MDS) was developed to gather uniform information on outcome measures. Furthermore, to combine the outcome measures into one single index and to promote comparability between studies, a preference-weighted Composite End Point (called: TOPICS-CEP) was developed [1]. The aim of this study was to validate TOPICS-CEP in a large heterogeneous sample of older persons aged ≥65 years.

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.