The Older Persons and Informal Caregivers Survey – Minimum Data Set / – Short Form

Abstract

The Older Persons and Informal Caregivers Survey – Minimum DataSet (TOPICS-MDS) is a standardized, comprehensive instrument designed to systematically collect data regarding the physical health, mental health, and overall well-being of older individuals and their informal caregivers across the Netherlands. Its core function is to assess the impact of elder care interventions and innovations on crucial outcomes, including quality of life, functional status, and psychosocial functioning for both the older patient and the caregiver dyad. The dataset is particularly notable because the collected responses are stored in a publicly accessible database, promoting data sharing and enhancing the comparability of findings across various academic and clinical studies related to geriatric care.

A derived, abbreviated version, the TOPICS-Short Form (TOPICS-SF), was developed specifically for the care recipient. The TOPICS-SF is utilized as a validated Patient-Reported Outcome Measure (PROM) for routine application in both outpatient and inpatient clinical practice settings.

Keywords

TOPICS-MDS, TOPICS-SF, Elderly Care, Informal Caregiver, Quality of Life, Patient-Reported Outcome Measure, Geriatrics, Well-being, Functioning, Multimorbidity.

Authors

Lutomski JE, et al. (2013) for TOPICS-MDS; Santoso AMM, et al. (2018) for TOPICS-SF.

Purpose

The primary purpose of the TOPICS-MDS instrument is to establish a standardized method for recording and evaluating the effectiveness of various elderly care models and innovations. By using a uniform set of outcome measures, the instrument ensures that data collected across different institutions and research projects in the Netherlands are directly comparable. This standardization is critical for building a robust evidence base regarding the efficacy of care provided to older persons.

A secondary, yet equally vital, purpose involves facilitating public access to the collected data. The resulting database helps researchers and policymakers gain a deeper understanding of the health challenges experienced by older persons and their informal caregivers, thereby contributing to increased knowledge in the field of geriatric care and intervention development. The TOPICS-SF specifically serves the purpose of routine clinical monitoring, providing a quick, valid measure of patient outcomes in daily practice.

Construct

The TOPICS-MDS measures a complex, multi-dimensional construct encompassing the holistic well-being and functional status of the older person and the associated burden experienced by their caregiver. This approach recognizes that the health outcomes of the older person are intrinsically linked to the support structure provided by informal care.

Key dimensions assessed by the TOPICS-MDS questionnaires include:

• Physical Health and Functioning: Assessing functional limitations and mobility.
• Mental Health and Well-being: Evaluating spiritual and psychosocial well-being, as well as mental health status.
• Multimorbidity: Measuring the burden associated with multiple co-occurring chronic conditions.
• Caregiver Burden: Quantifying the perceived burden of care and the total number of hours dedicated to informal caregiving.
• Quality of Life (QoL): Capturing the overall quality of life using validated instruments relevant to these populations.

Validity

The TOPICS-MDS and its derived Short Form (TOPICS-SF) are built upon a foundation of validated instruments, ensuring high measurement quality. The original TOPICS-MDS framework incorporated several pre-existing, validated questionnaires tailored to measure outcomes relevant to older populations and their informal caregivers, thus establishing strong content and concurrent validity.

The TOPICS-SF, specifically developed for clinical use as a PROM, underwent rigorous validation testing (Santoso et al., 2018) to confirm its psychometric soundness. This validation process focused on ensuring the short form maintained adequate construct validity and responsiveness while being brief enough for routine use in high-throughput clinical environments.

Reliability

While specific detailed reliability coefficients (such as Cronbach’s alpha for internal consistency or test-retest reliability) are typically published in the validation papers (Lutomski et al., 2013; Santoso et al., 2018), the reliance of TOPICS-MDS on established, reliable component instruments suggests inherent reliability. The design principle of the Minimum Data Set emphasizes consistency in data collection, which inherently supports improved measurement reliability across different studies and settings.

For the TOPICS-SF, reliability studies confirmed that the shortened scale accurately and consistently captured the core constructs of quality of life and functional status, making it a reliable tool for tracking patient progress over time in clinical practice.

Factor Analysis

The TOPICS-MDS is structured as a Minimum Data Set, meaning it aggregates scores from multiple distinct, previously factor-analyzed subscales (e.g., scales for QoL, mental health, and functional limitations) rather than being a single, unitary scale requiring a single factor analysis across all items. However, the development of the TOPICS-SF involved specific factor analytical techniques.

The creation of the TOPICS-SF (Santoso et al., 2018) utilized advanced psychometric methods, likely including Confirmatory or Exploratory Factor Analysis, to ensure that the selected subset of items accurately represented the underlying factors (latent constructs) measured by the full TOPICS-MDS questionnaire while maximizing efficiency for clinical PROM usage.

Instrument

Test Type: Questionnaire / Survey Instrument.

Format: Minimum Data Set (MDS) for research; Short Form (SF) for clinical practice.

Language Available: Primarily Dutch (Developed in the Netherlands).

Population Group: Older Persons and Informal Caregivers.

Age Group: Adults and Elderly (The source also mentions Children, suggesting applicability in related caregiver studies, but the primary focus is on the older population).

Population Details: Individuals receiving or providing elderly care in various settings (home care, clinical, community).

Test Methodology: Self-report questionnaire combining demographic data with standardized, validated outcome measures.

Keywords

Geriatric Assessment, Health Services Research, Informal Support, Functional Status, Multimorbidity, Care Burden, Questionnaire, Public Database, Clinical Outcome Measurement.

Authors

Author ORCID Identifier: Information not provided in source material.

Affiliation Email addresses: Information not provided in source material.

Correspondence Address: Information not provided in source material.

Permissions & Fee and Test Year

The TOPICS-MDS was initially published in 2013 (Lutomski JE, et al.). The derived clinical short form, TOPICS-SF, was published later in 2018 (Santoso AMM, et al.). Given that the data collected using this instrument is intended for a publicly accessible database to promote research, the instrument itself is generally available for academic and clinical use, often requiring adherence to data governance protocols established by the TOPICS consortium. Specific licensing or fee requirements should be confirmed with the relevant Dutch research institution managing the database.

The explanatory form for the instrument is available for download. The original PDF can be downloaded here: Toelichtingsformulier (Explanation Form).

Reference’s

• Lutomski JE, Baars MA, Schrijvers CT, et al. (2013). The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): a core set of standardised measures for multidisciplinary research, audit and quality improvement. BMC Geriatrics, 13, 117.
• Santoso AMM, van Veenendaal H, Lutomski JE, et al. (2018). Development of the TOPICS-SF: a short form of the Older Persons and Informal Caregivers Survey Minimum Data Set (TOPICS-MDS) for use as a Patient-Reported Outcome Measure (PROM) in clinical practice. Quality of Life Research, 27(10), 2689-2699.

Items of the The Older Persons and Informal Caregivers Survey – Minimum DataSet / – Short Form

IMPORTANT: The following scale items must be preserved in their original language and must not be changed in any way.

The original source content did not provide the specific items of the TOPICS-MDS or TOPICS-SF, but rather listed the domains covered by the instrument. The domains covered include:

• Demografische kenmerken (Demographic characteristics)
• Meervoudige ziektelast (Multimorbidity burden)
• Ervaren zorglast (Perceived care burden)
• Aantal mantelzorguren (Number of informal care hours)
• Kwaliteit van leven (Quality of life)
• Functionele beperkingen (Functional limitations)
• Geestelijke gezondheid (Mental health)
• Sociaal functioneren (Social functioning)