Bas Steunenberg

The development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A large-scale data sharing initiative

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.

Design and methods of the Hospital Elder Life Program (HELP), a multicomponent targeted intervention to prevent delirium in hospitalized older patients: efficacy and cost-effectiveness in Dutch health care

BackgroundThe Hospital Elder Life Program (HELP) has been shown to be highly efficient and (cost-)effective in reducing delirium incidence in the USA. HELP provides multicomponent protocols targeted at specific risk factors for delirium and introduces a different view on care organization, with trained volunteers playing a pivotal role. The primary aim of this study is the quantification of the (cost-)effectiveness of HELP in the Dutch health care system. The second aim is to investigate the experiences of patients, families, professionals and trained volunteers participating in HELP.Methods/DesignA multiple baseline approach (also known as a stepped-wedge design) will be used to evaluate the (cost-) effectiveness of HELP in a cluster randomized controlled study. All patients aged 70 years and older who are at risk for delirium and are admitted to cardiology, internal medicine, geriatrics, orthopedics and surgery at two participating community hospitals will be included. These eight units are implementing the intervention in a successive order that will be determined at random. The incidence of delirium, the primary outcome, will be measured with the Confusion Assessment Method (CAM). Secondary outcomes include the duration and severity of delirium, quality of life, length of stay and the use of care services up to three months after hospital discharge. The experiences of patients, families, professionals and volunteers will be investigated using a qualitative design based on the grounded theory approach. Professionals and volunteers will be invited to participate in focus group interviews. Additionally, a random sample of ten patients and their families from each hospital unit will be interviewed at home after discharge.DiscussionWe hypothesize that HELP will reduce delirium incidence during hospital admission and decrease the duration and severity of delirium and length of hospital stays among these older patients, which will lead to reduced health care costs. The results of this study may fundamentally change our views on care organization for older patients at risk for delirium. The stepped-wedge design was chosen for ethical, practical and statistical reasons. The study results will be generalizable to the Dutch hospital care system, and the proven cost-effectiveness of HELP will encourage the spread and implementation of this program.Trial RegistrationNetherlands Trial register: NTR3842

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)

PurposeValidity 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).MethodsData 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.ResultsThe 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.ConclusionsAlthough 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.

Community health worker interventions to improve access to health care services for older adults from ethnic minorities: a systematic review.

BackgroundThe health status of older adults belonging to ethnic minorities in Western countries is an important public issue because their health is often less favourable than that of older adults from the majority population. In addition, the number of older adults belonging to ethnic minorities is increasing rapidly in Western countries. The introduction of community health workers (CHWs) has proven to be successful in addressing health disparities among ethnic minorities; however, an overview of CHW’s benefits for older adults is absent in the literature. We reviewed the literature to explore whether CHWs are also effective in improving the health and the delivery of health care services to ethnic minority older adults in Western countries.MethodsWe searched the PubMed database (2002-Present) for RCTs published on the use of CHWs in Western countries.ResultsOut of the 729 studies identified, seven studies met our inclusion criteria. The effectiveness of the implementation of CHW programmes in older adults belonging to ethnic minorities is not univocal. In two studies, we found no significant differences. In five studies, we found some positive effects. We did not find negative effects in any of the studies. For better interpretation of the results, effect ratios (ERs) were calculated as the number of positive findings divided by the total number of measured findings. Substantial effects on the access to care (mean ER = 0.58) and on health behaviour (mean ER = 0.45) were found. The mean ER for health outcomes was considerably lower (mean ER = 0.17).ConclusionWe found indications that CHWs serve as a means of improving health care use and health behaviour and, to a lesser extent, health outcomes among ethnic minority older adults. Further research is required to draw more solid conclusions on the effectiveness of CHW interventions in this target group. This is particularly important for Western countries in which the number of ethnic minority older adults has increased significantly because their health status is mostly unfavourable and their access to health care services is often limited.

Culturally sensitive care for elderly immigrants through ethnic community health workers: design and development of a community based intervention programme in the Netherlands

BackgroundIn Western countries, health and social welfare facilities are not easily accessible for elderly immigrants and their needs are suboptimally addressed. A transition is needed towards culturally sensitive services to overcome barriers to make cure and care accessible for elderly immigrants. We developed an intervention programme in which ethnic community health workers act as liaisons between immigrant elderly and local health care and social welfare services. In this study we evaluate the effectiveness and the implementation of this intervention programme.Methods/designIn a quasi experimental design, the effectiveness of introduction of community health workers, health needs assessment, and follow-up intervention programme will be evaluated in three (semi) urban residential areas in the Netherlands and compared with a control group. Community health workers are selected from local ethnic communities and trained for the intervention. Data on health perception, quality of life, and care consumption are collected at baseline and after the intervention programme. Elderly’s informal care givers are included to examine caregiver burden. The primary outcome is use of health care and social welfare facilities by the elderly. Secondary outcomes are quality of life and functional impairments. The target number of participants is 194 immigrant elderly: 97 for the intervention group and 97 for the control group. Implementation of the intervention programme will be examined with focus groups and data registration of community health worker activities.DiscussionThis study can contribute to the improvement of care for elderly immigrants by developing culturally sensitive care whereby they actively participate. To enable a successful transition, proper identification and recruitment of community health workers is required. Taking this into account, the study aims to provide evidence for an approach to improve the care and access to care for elderly immigrants. Once proven effective, the community health worker function can be further integrated into the existing local health care and welfare system.Trial registrationTrial registration number: ISRCTN89447795

How trained volunteers can improve the quality of hospital care for older patients. A qualitative evaluation within the Hospital Elder Life Program (HELP).

The aim of this study was to investigate, using a mixed-methods design, the added value of a trained Hospital Elder Life Program (HELP) volunteer to the quality of hospital care in the Netherlands. The trained volunteers daily stimulate older patients, at risk of a delirium, to eat, to drink, and to exercise, and they provide walking assistance and cognitive stimulation. This study showed that each group appreciated the extra attention and service from the volunteers. The positive effect on feelings of loneliness during the hospital stay was an unexpected outcome. The volunteers themselves appreciated their work. In conclusion, a HELP volunteer should be provided to every older hospital patient.

Applying prosodic speech features in mental health care: An exploratory study in a life-review intervention for depression

The present study aims to investigate the application of prosodic speech features in a psychological intervention based on lifereview. Several studies have shown that speech features can be used as indicators of depression severity, but these studies are mainly based on controlled speech recording tasks instead of natural conversations. The present exploratory study investigated speech features as indicators of depression in conversations of a therapeutic intervention. The changes in the prosodic speech features pitch, duration of pauses, and total duration of the participant’s speaking time were studied over four sessions of a life-review intervention for three older participants. The ecological validity of the dynamics observed for prosodic speech features could not be established in the present study. The changes in speech features differed from what can be expected in an intervention that is effective in decreasing depression and were inconsistent with each other for each of the participants. We suggest future research to investigate changes within the intervention sessions, to relate the changes in feature values to the topical content of the speech, and to relate the speech features directly to depression scores.

Power of the past: a randomized controlled trial to assess effectiveness of life review therapy in palliative cancer patients

How patients make use of a specialist nurse function in head and neck cancer: an empirical study

The efficacy of Life Review Therapy combined with Memory Specificity Training (LRT-MST) targeting cancer patients in palliative care: A randomized controlled trial

Background The aim of this study was to evaluate the efficacy of an intervention combining Life Review Therapy (LRT) and Memory Specificity Training (MST) (LRT-MST) to improve ego-integrity and despair among cancer patients in palliative care. Methods In this multicentre randomized controlled trial, cancer patients in palliative care were randomized to the intervention group (LRT-MST; n = 55) or waiting-list control group (n = 52). LRT-MST is a 4-session home-based psychological intervention that aims to retrieve specific positive memories, to re-evaluate life events and to reconstruct the story of a patient’s life, including the diagnosis of incurable cancer. Outcome measures were ego-integrity and despair (NEIS), psychological distress, anxiety and depression (HADS), quality of life (EORTC QLQ-C15-PAL), and specificity of the autobiographical memory (AMT). NEIS, HADS and EORTC QLQ-C15-PAL were assessed at baseline (T0), 1 month later (post-treatment; T1), and at 1 month follow-up (T2). AMT was assessed at T0 and T1. Linear mixed models (intention to treat) were used to assess group differences in changes over time. Independent samples t-tests were used to assess group differences at T0, T1, and T2, and effect sizes (ES) were calculated at T1 and T2. Results The course of ego-integrity (not despair) improved significantly over time (p = .007) in the intervention group compared to the waiting-list control group, with moderate, but insignificant, effect sizes at T1 (ES = .42) and T2 (ES = .48). Compliance rate was 69% and total dropout rate was 28%, both primarily related to disease progression and death. Conclusions LRT-MST seems effective among cancer patients in palliative care to improve the course of ego-integrity.

Oudere migranten en huisartsbezoek; samen op weg naar heldere communicatie!

SamenvattingDe taalbarrière en cultureel bepaalde communicatieproblemen maken het contact tussen huisarts en oudere migrant tot een aandachtspunt. Oudere migranten hebben bijvoorbeeld problemen met het helder onder woorden brengen van hun klachten en hebben minder kennis van gezondheid en leefstijl. In deze bijdrage geven wij aanbevelingen en delen wij ervaringen vanuit het ‘Stem van de Oudere Migranten project’. Een project vanuit het UMC Utrecht in het kader van het Nationaal Programma Ouderenzorg (NPO; ZonMw). Er komen specifieke aandachtspunten aan de orde op het gebied van de inzet van de praktijkondersteuner ouderenzorg, communicatie door de huisarts en aan de hand van een aantal voorbeelden wordt getoond hoe de huisartsenzorg en preventie rondom deze groep kunnen worden vormgegeven.