Protocol for a multi-domain scoping review to identify measures of decision-making ability in an ageing population

Abstract

Introduction

Deficits in decision-making (DM) can lead to adverse outcomes across multiple domains such as financial management and medical care. By hindering such DM abilities, cognitive impairment (CI) often affects quality of life. Routine screening for CI, however, does not include systematic and comprehensive assessment of DM ability. While there are many DM measures, there is considerable heterogeneity in what constructs are measured and the populations in which they have been validated. This scoping review protocol details the proposed comprehensive examination of published literature on DM measures used in adults aged 45 years and older.

Methods and analysis

Arksey and O’Malley’s (2005) scoping review methodology framework will guide the current scoping review. We will systematically search Embase (Elsevier), MEDLINE (Ovid), PsycINFO (Ebsco), Cochrane Library (Wiley), Web of Science (Clarivate) and Scopus (Elsevier) to identify the studies meeting our eligibility criteria. We will review literature published between January 2018 and November 2023. Following best practice recommendations, a two-stage study selection process will be applied. First, titles and abstracts will be independently reviewed by two reviewers based on our eligibility criteria. Second, full texts will be screened and data will be extracted only from the articles included after the full review. The results of the current scoping review will be reported in adherence to PRISMA-Scr guidelines.

Ethics and dissemination

This study does not require ethics approval as the scoping review methodology involves reviewing results from publicly available published materials. Results of the scoping review will be submitted for publication in a peer-reviewed journal.

Trial registration number

NIA grant number 1U24AG082022-01.

EHH and BE are joint first authors.

STRENGTHS AND LIMITATIONS OF THIS STUDY

• The search strategy of the current scoping review includes six electronic databases with all peer-reviewed literature on assessment of decision-making ability in adults aged 45 years and above.

• The search strategy will include broad search terms such as ‘decision-making ability’ and ‘ageing’ as well as domain-specific search terms such as ‘financial decision-making’ and ‘advanced care planning’.

• This multi-domain scoping and rapid review will comprehensively capture the measures that are extant in the literature across multiple domains highly relevant to decision-making ability and extract the psychometric and validity evidence.

• The identification and synthesis of data will be limited to peer-reviewed research articles excluding other sources such as grey literature (eg, dissertations, non-formally published studies), review papers and study protocols.

• The scoping review is limited to articles published in the past 5 years (2018–2023).

Introduction

Cognitive decline in older adults is characterised by difficulties in several domains such as memory, learning, planning, reasoning, language, concentration and decision-making (DM).¹ Cognitive impairment (CI) and dementia can be caused by neurodegenerative diseases of the brain that arise in ageing, collectively referred to as Alzheimer’s Disease and related Dementias (ADRD), which refer to a group of neurodegenerative diseases and are marked by a decline in cognitive domains such as memory, language and DM in addition to the difficulties in daily functioning. In addition to age-related CI, DM generally changes in older adults, that is, older decision-makers favour strategies that are less complex and systematic.² Given that changes in DM may precede CI, it is important to have tools that assess decision-making explicitly. We define DM as a combination of judgement or the understanding of how outcomes follow possible choices, preference or how the outcomes are perceived or weighed and choice or how judgments and preferences are combined to give rise to a decision.³ It must be acknowledged, however, that ageing-associated CI and ADRD have become pressing societal concerns as the rise in average life expectancy is accompanied by the increase in the ageing population.⁴ These consequences, including declining physical and mental functional status that interferes with independence and well-being, can be devastating for affected individuals and their families.⁵ Prevalence estimates for CI in older adults vary (likely due to differences in samples, diagnostic criteria and measurement) from 4% to 62%,^{6 7} with 7%–25% of this sample specifically experiencing mild cognitive impairment,⁸ which is defined as CI in the absence of functional impairment and a clinical diagnosis considered to increase risk for future development progression to a state of dementia. Furthermore, with age comes an increasing emphasis on making highly consequential, long-term and varied decisions, ranging from medical to financial to legal and beyond.⁹ These decisions underlie the basic competencies for independent living and overall well-being. There is ample evidence that deficits in DM ability can lead to adverse outcomes across multiple domains, including financial management, medical compliance and other instrumental activities of daily living.¹⁰ For example, deficits in DM have been found to have financial consequences such as missed bill payments, risky investment choices and financial exploitation.¹¹ In healthcare settings, DM deficits often result in healthcare decisions being deferred to physicians and older adult’s providers ultimately denying their participation in healthcare decisions and often impacting the quality of their decisions.¹² Furthermore, it has been noted that successful performance of instrumental activities of daily living such as bathing and household chores is contingent on cognitive abilities such as reasoning, planning and DM.¹³ CI often involves reduction in basic DM abilities, significantly impacting quality of life. Despite a 2020 United States Preventive Services Task Force report pointing to the importance of early assessment and detection of such functional outcomes for older adults, caregivers and families, routine CI screening typically does not include systematic and comprehensive assessment of DM ability.

While it is well known that impaired DM is sometimes a consequence of CI, there is emerging evidence that DM may also be a promising marker for detection of the so-called preclinical dementia,⁵ a stage at which disease in the brain has not yet manifested itself in more obvious clinical symptoms. This distinction may be especially relevant when CI involves high-order functions like social cognition, judgement and similar constructs not easily captured with standard cognitive tasks. Indeed, standard neuropsychological tests used to evaluate for cognitive decline in ageing typically do not include measures of DM and/or other important higher order functional outcomes in older adults.^{10 14–16} Rather, DM is often inferred from scores on tests of underlying cognitive abilities (eg, problem solving, abstract reasoning), not from tests that explicitly assess DM or judgement. While there are measures assessing different facets of DM in other areas, including the fields of cognitive psychology and behavioural economics, the constructs covered have considerable heterogeneity regarding construct coverage, validated populations and other psychometric properties. Furthermore, there is little research on tests and measures assessing DM areas of critical interest to adult populations, such as the ability to perform instrumental activities of daily living like driving independently.

It is essential to develop cognitive screening processes that may be easily implemented across healthcare settings to detect subtle declines in cognitive and functional status including DM ability. A psychometrically sensitive measurement tool for DM ability should be able to distinguish between routine age-related decline in DM abilities and a deterioration accelerated by underlying neurodegenerative processes. While neuropsychological tests generally do not directly assess DM, measures of DM exist in the literature and could potentially be adapted. Ultimately, the goal of the current scoping review is to provide a comprehensive evidence synthesis to review existing measures, which can aid in the development of a comprehensive DM assessment in the vulnerable population of those who may have CI. There are systematic reviews that have explored DM in mid-life and ageing populations and identified deficits in DM and making advantageous choices.^{17 18} Many systematic reviews, however, tend to focus on general DM or DM regarding finances and healthcare and do not explore other domains. Furthermore, including adults 45 years and older allows identification of measures sensitive to detecting cognitive ageing and potential DM deficits on the basis that these deficits may occur earlier in life.^{19 20} Using a broader age range, we aim to identify trends and better characterise this phenomenon to find tools sensitive to early cognitive ageing.

Methods and analysis

Protocol design

This multi-domain scoping review will employ the methodological framework developed by Arksey and O’Malley²¹ and will be reported in adherence to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Review (PRISMA-Scr) ²² guidelines (see online supplemental file 1 to see the entire PRISMA-Scr checklist and locations of relevant sections of this protocol). We will follow the five stages of scoping review proposed by PRISMA-Scr guidelines: (1) identification of the research question(s), (2) identification of relevant studies, (3) selection of eligible studies, (4) data extraction and (5) summarising and reporting the results.

Stage 1: identification of the research question(s)

The following research questions are developed for the present scoping review:

• RQ-1: In adults over 45, what DM measures have been used to assess DM ability?

• RQ-2: For the identified measures, what modality are they presented in (eg, in-person/remote, paper-and-pen/digital)?

• RQ-3: In the papers identified, how is DM defined in these studies?

  • What subdomains of DM (eg, medical or financial) do these measures assess?

  • What convergent validity evidence exists for these measures (eg, what other measures of similar constructs have been administered alongside these DM measures?

• RQ-4: For the measures identified, can DM measures meaningfully differentiate between various levels of CI?

Given the nature of our research question, we will answer the research questions in a two-part process: a scoping review (Part 1, five stages), followed by a rapid review (Part 2).

Stage 2: identification of relevant studies

This stage of scoping review involves the development of a search strategy based on decisions on search resources, publication period and the development of a list of search terms. In this scoping review, we will use the PICO^{23 24} (Population, Intervention, Comparator, Outcomes) framework, to develop our research questions and search strategy. The PICO elements for our scoping review are presented in table 1.

Table 1

PICO framework for the present scoping review

PICO element	Explanation
Patient/population	Adults older than 45 years
Intervention /exposure /concept	N/A
Comparison (optional)	Other clinical or general population groups; other psychological measures (eg, self-report or caregiver report)
Outcome/context	Self-report or performance measures of decision-making that can meaningfully differentiate between various levels of age-related cognitive impairment

NA, not applicable; PICO, Population, Intervention, Comparator, Outcomes.

For an article to be included in this scoping review, it will meet the eligibility criteria displayed in table 2. As seen in table 2, we included psychiatric disorders in the scope of our review because cognitive dysfunction is often present in these disorders²⁵ and persons with psychiatric disorders may be at higher risk for neurocognitive decline with ageing. Moreover, by examining articles from the past 5 years, we aim to capture measures currently used that could lend itself to easy digital adaptation. We also wanted to maintain the scope of the project as this is part of a federally funded project with an expected timeline of completion of about a year from conception to finalising the extraction of all articles.

Table 2

Eligibility criteria for our scoping review

	Inclusion criteria	Exclusion criteria
Sources	EMBASE (Elsevier) MEDLINE (Ovid) Web of Science (Clarivate) PsycINFO (EBSCO) Cochrane Library (Wiley) Scopus (Elsevier)	Grey literature (eg, theses, dissertations) Books/book chapters Narrative reviews Clinical trials Review articles Commentaries Conference proceedings Study protocols Preprints If the paper discusses policy implications only Non-research publications
Study design	Cohort study Case control study Randomised control trial	Single-subject research/case studies (eg, n=1) Focus groups, interviews
Population	Adults over age 45 years No cognitive impairment Mild cognitive Impairment Major neurocognitive disorders Dementia/major neurocognitive disorder Alzheimer’s disease/Dementia of the Alzheimer Type (DAT) Frontotemporal dementia Primary progressive aphasia Lewy body dementia Vascular dementia/cognitive impairment Psychiatric disorders (eg, schizophrenia)	Adults ≤45 years old
Context	All geographic locations	None
Language	All languages for the measure and administration as long as the paper is published in English	Papers published in a language other than English
Year	Year limit from 2018	Before 2018

Search strategy

We are interested in measure usage and adoption, rather than original psychometric development of the measure. Thus, the scoping review will include studies covering the last 5 years of research on the assessment of DM ability in ageing populations, conducted from January 2018 to November 2023. Our search strategy will include search terms in the DM ability literature for the following domains:

• Financial DM.

• Functional outcomes (eg, activities of daily life including skills and behaviours which are manifestations of daily smaller decisions, that is, driving, household chores and bathing).

• Healthcare DM.

• End-of-life DM.

• Non-cognitive (affective or emotional) DM (eg, an individual’s ability to monitor/influence their emotional state, employ different affective strategies in various contexts and situations and manage interpersonal interactions).

We will search Embase (Elsevier), MEDLINE (Ovid), PsycINFO (Ebsco), Cochrane Library (Wiley), Web of Science (Clarivate) and Scopus (Elsevier). Online supplemental file 2 contains the full search strategy. The search strategy was developed based on team discussions, background materials and database records for relevant papers. Individual terms were tested, as needed, and the full search strategy was tested against a small validation set of previously identified papers. In short, the search strategy was developed to encompass the intersection of articles covering many domains of DM, neuropsychological testing and assessment, CI and geriatrics/ageing.

Stage 3: selection of eligible studies

This stage involves three levels of screening: (1) title and abstract screening, (2) full-text review and (3) full-text extraction that will be completed from December 2023 to February 2024.

Dry-run screening

In order to conduct a dry-run screening for internal scientists, a preliminary set of 80 articles was identified based on keywords, without considering the year of publication. This task was performed by a university librarian who closely collaborated with the project team. These articles were randomly divided and assigned to three pairs of PhD reviewers. The reviewers excluded or included articles based on their content and the extent to which they assessed DM ability. Each reviewer independently evaluated the titles and abstracts, recording their decisions and justifications (see online supplemental file 3). Following this dry-run screening, scientists provided recommendations for exclusion/inclusion criteria (eg, type of source, sample characteristics, age range, language), including narrowing the publication years to 2018–2023. In summary, this dry-run screening was used to refine the eligibility criteria for our search strategy.

Title and abstract screening

All included databases (see table 2) will be reviewed with the help of a librarian from Northwestern University’s Galter Library of Health Sciences. Deduplication will occur before screening. Each article will be screened by two trained reviewers independently. Any articles deemed relevant by either or both reviewers will be included in the full-text review. Conflicts will be resolved by a third reviewer.

Full-text review

In the second step, two independent reviewers will perform full-text screening to determine whether the articles will be excluded or included. Any disagreement regarding full-text screening (ie, conflicts) will be reviewed and resolved also by a third reviewer. To determine inter-rater agreement, Cohen’s κ statistic²⁶ will be calculated for both levels of screening.

Full-text extraction

Data from each article’s full text will be extracted by two pairs of independent reviewers, and inter-rater reliability will be assessed and evaluated. Disagreements between the reviewers will be resolved through joint discussion or with an independent third reviewer.

Stage 4: data extraction

The data extraction table will include the key elements listed below:

• Title

• Doi number

• Definition of DM

• Domain

  • Financial DM

  • Functional outcomes (eg, activities of daily life)

  • Healthcare DM

  • End-of-life DM

  • Non-cognitive (affective or emotional) DM

• Language of administration

• Sample characteristics

  • Sample size

  • Sample age range

• Measure information

  • Name of the measure

  • Original citation

  • Duration of the measure (eg, time to complete measure)

• Administration characteristics (eg, in-person, remote, self-administered)

• Required technology (eg, computer, tablet, smartphone, paper-pen)

• Scoring (eg, score name, score level, score type)

• Internal consistency of the measure

• Inter-rater reliability

• Test-retest reliability

• Known-groups validity/comparison to other measures (if available)

The results of this multi-domain scoping review will be reported in accordance with the PRISMA-ScR²² guidelines. Once this information is extracted, all studies will be organised by the domain the research assistant deemed to fit in, based on our definition of the domain (financial, healthcare, functional outcomes, end-of-life and non-cognitive). This will allow scientists to see if a single study included more than one DM measure in the data organised by paper and the frequency in which measures were used in the data organised by measure.

Stage 5: summarising and reporting the results

This scoping review will provide a comprehensive overview of the literature on the assessment of DM ability in an ageing population. We will describe and summarise the number of studies associated with each domain, the sample characteristics, the mode of administration, the language used, the technology it uses (computer, tablet, phone, etc) and calculated percentages for this to create a comprehensive picture of what DM measures are currently being used in our domains of interests and where, how and to whom they are being administered. We anticipate that the results will identify research gaps and inform future studies.

Part 2: rapid review

After completing the multi-domain scoping review, we will aim to conduct a rapid review.^{27 28} Rapid reviews are ways of streamlining scoping reviews to increase efficiency, potentially provide historical context on key articles and ultimately facilitate a literature synthesis in a shorter time frame than more conventional methods. While rapid reviews are typically done in replacement of scoping or systematic reviews, our current use of the rapid review is as an adjunct and extension of the existing scoping review.²⁹ The purpose of the rapid review will be to investigate, for the top five measures used in each domain as procured by the scoping review, the psychometric properties and validity evidence. If there are candidate measures that were not culled in the scoping review but that are identified through a consensus-driven approach (eg, newly developed measures that have not been traditionally peer reviewed yet or with particularly compelling validation evidence or recommended by subject matter experts), the authors will also find relevant articles for those measures as part of the rapid review. We will transparently report measures identified at both the scoping review and the rapid review stages, if applicable.

Patient and public involvement

Patients and the public will not be involved in the design, conduct, reporting or dissemination plans of this study.

Discussion

This manuscript endeavours to outline the protocol for a detailed scoping protocol adhering to the framework proposed by Arksey and O’Malley.²¹ In the aim of making the review as comprehensive as possible, we deploy a scoping review, followed by a rapid review. Given that we are interested in validated measures with clinical validation evidence, we chose to include only peer-reviewed articles; however, we do acknowledge that this can lead to publication bias. Yet, to the best of our knowledge, there exists no comprehensive scoping review within the field of DM suited for a cognitive ageing population. While there are many measures that exist in cognitive psychology and other allied fields, these measures often are often lab based (eg, the Kirby, Petry and Bickel 1999 Delay Discounting Task),³⁰ may not be sensitive to real-world outcomes, may not be feasible for wide-spread implementation in a clinical population or have limited validity evidence in the population of interest. Finally, DM in an ageing population inherently encompasses many domains. The current protocol for evidence synthesis will comprehensively elucidate the extent to which existing measures are suitable for quick screening of DM ability. Our findings may inform existing healthcare policies by providing a well-validated, consistent measure of DM ability that may predict early potential loss of independence and autonomy in older adults due to CI, which can ultimately facilitate and inform care management plans. Furthermore, the findings may have implications for clinical and research use as our findings will result in a comprehensive review of the available instruments that may be used to assess various aspects of DM in older adults with a multitude of clinical presentations (eg, age-associated CI and other neuropsychiatric disorders). This may be a particularly helpful resource for clinicians and researchers so that they have a current reference for measures that are used to assess DM ability in a variety of domains and the psychometric and clinical validation evidence for each measure, if they are reported in the articles that are identified by the search. In addition, the scoping review will also inform measure selection and adaptation. At this measure selection and adaptation stage, a usability and feasibility study will be conducted on the measures to ensure that older adults who may have less financial and digital literacy can navigate and complete the assessment with fidelity.

Ethics and dissemination

This study does not require ethics approval as the scoping review methodology involves reviewing results from publicly available published materials. Results of the scoping review will be submitted for publication in a peer-reviewed journal.

Ethics statements

Patient consent for publication

Not applicable.

Footnote

X @emilyhho

Contributors EHH and BE conceived the idea for the scoping review. EHH, BE and CHM led the design of the protocol and methodology and wrote the first draft of the manuscript. MAN, SP, TKR, MAM, EMD, ZH, PB, AJK, SDH, PL, JH, RG and SW provided inputs to the methods, designed the search strategy and critically revised the manuscript. EH, BE, ZH and CHM designed the data extraction form. AJK, SDH, PL, JH, RG and SW provided additional inputs on the research questions. All authors provided valuable input to the research questions and protocol strategy. EHH is responsible for the overall content as guarantor.

Funding This work was supported by NIA grant number 1U24AG082022.

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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