A Compendium of Tests, Scales and Questionnaires

The Practitioner's Guide to Measuring Outcomes after Acquired Brain Impairment

Robyn L. Tate

• Publisher: Psychology Press
• Year: 2020
• ISBN:
  9781000144451
• Edition: 1
• Topic: Psicologia
• Subtopic: Storia e teoria della psicologia

This Compendium is a comprehensive reference manual containing an extensive selection of instruments developed to measure signs and symptoms commonly encountered in neurological conditions, both progressive and non-progressive. It provides a repository of established instruments, as well as newly-developed scales, and covers all aspects of the functional consequences of acquired brain impairment.

In particular, the text provides a detailed review of approximately 150 specialist instruments for the assessment of people with neurological conditions such as dementia, multiple sclerosis, stroke and traumatic brain injury. Part A presents scales examining body functions, including consciousness and orientation; general and specific cognitive functions; regulation of behaviour, thought, and emotion; and motor-sensory functions. Part B reviews scales of daily living activities and community participation. Part C focuses on contextual factors, specifically environmental issues, and Part D contains multidimensional and quality of life instruments.

Each instrument is described in a stand-alone report using a uniform format. A brief history of the instrument's development is provided, along with a description of item content and administration/scoring procedures. Psychometric properties are reviewed and a critical commentary is provided. Key references are cited and in most cases the actual scale is included, giving the reader easy access to the instrument. The structure of the book directly maps onto the taxonomy of the influential International Classification of Functioning, Disability and Health (World Health Organization, 2001), enabling linkage of clinical concepts across health conditions.

The Compendium will be a valuable reference for clinicians, researchers, educators, and graduate students, and a practical resource for those involved in the assessment of people with brain impairment.

The book is accompanied by a password protected website. For a one-off payment, purchasers of the book can gain online access to the majority of the tests, scales and questionnaires featured in the book as downloadable PDFs. See inside the book for more details.

1 Introduction

Assessment after acquired brain impairment (ABI) or any other health condition is conducted for at least three main reasons: diagnosis, prognosis and evaluation (Dekker, Dallmeijer, & Lankhorst, 2005; Kirshner & Guyatt, 1985). This compendium provides a resource of assessment instruments for these purposes and the measures are described in the following nine chapters. The present introductory chapter contains three sections. First, a background to the book is provided, including the methodology used in the selection and description of the instruments. The second section describes the International Classification of Functioning, Disability and Health (ICF; WHO, 2001), which is the conceptual framework underlying the structure and organization of the compendium. Challenges that were encountered in placing instruments developed for ABI into the ICF framework are addressed in the final section of the chapter. The following nine chapters are grouped into four parts, which correspond in an approximate way to components of the ICF: Part A – Body Functions; Part B – Activities and Participation; Part C – Contextual Factors, specifically Environmental Factors; and Part D presents multidimensional scales – that is, instruments containing a disparate set of items crossing multiple ICF components and domains.

Background and methodology

Purpose

This compendium is intended primarily for health professionals who work with people experiencing (or at risk of) ABI. Users will include clinical practitioners in diagnostic, rehabilitation and community settings, as well as clinical researchers, educators and advanced student trainees. The main objective is to present a range of tests, scales and questionnaires suitable for administration by generic health professionals, as well as by specialists including clinical and neuropsychologists, medical practitioners, nurses, occupational therapists, physiotherapists, speech pathologists, and social workers. There is a vast array of such measures, and the observations made in 1969 by Lawton and Brody, whose instrumental activities of daily living scale continues to be widely used today, still apply: “The present state of the trade seems to be one in which each investigator or practitioner feels an inner compulsion to make his own scale and to cry that other existent scales cannot possibly fit his own setting” (p. 179). Indeed, recent years have seen an explosion of published tests, scales and questionnaires. More than one quarter of the instruments included in this compendium were published in the last 10 years.

Good assessment is fundamental to evidence-based clinical practice. The advantage of using standardized assessment instruments is that they provide a systematic and often objective means of evaluating level of functioning. This may be an end in itself, as in differential diagnosis, or it may provide a baseline against which future change (either improvement or deterioration) can be measured. Sometimes the need will be for prediction of the natural history and course of the condition; other times the baseline will be used to measure the effect of a therapeutic intervention. Prigatano and Pliskin (2003) and others observed that there is an increasing pressure to justify services – the best measures will yield the most valid results. Additionally, results from assessments can be used in clinical practice to describe levels of functioning from various perspectives, identify areas of need, ascertain the differential contribution of a range of factors, inform treatment planning and decisions, help people to make practical decisions, and educate families and people with ABI as well as other professionals.

As shown in the ICF model in the next section, a person’s level of functioning can be assessed from a variety of perspectives (e.g., body system, functional activities, social role and participation, environmental milieu), and in turn, level of functioning is a consequence of interaction among such factors. The assessment instruments presented in this volume examine functioning from each of these various perspectives, and best practice suggests that comprehensive evaluation of an individual requires evaluation of each domain. Hall (1992) and Wade (2003) proffer a series of questions that clinicians and researchers can pose to refine the process of selecting measures. Even so, they still can be placed in the situation of not knowing what measures are available. Moreover, Jette and Haley (2005) point to the tension between the need for comprehensive and clinically sensitive outcome instruments and the demands from the field for measures that are feasible in busy clinical settings. A resource manual such as the present one can provide guidance in these respects.

A number of other compendia of assessment instruments for clinical populations is available. Some cover a range of health conditions, not only neurological disorders (e.g., Bowling, 1997; Cole, Finch, Gowland, & Mayo, 1995; Cushman & Scherer, 1995; McDowell, 2006; Sederer & Dickey, 1996). These generally include generic as well as condition-specific instruments. It is recognized that both types of assessment measures have advantages and disadvantages. Yet, the large and increasing number of instruments developed specifically to measure neurological and neuropsychological function are testimony to the limitations and short-comings that clinicians and researchers have found in the application of generic instruments to people with neurological conditions (Kersten, Mullee, Smith, McLellan, & George, 1999).

Indeed, the sheer volume of assessment measures developed specifically for the investigation of ABI demands a dedicated compendium. Such resources are available for specialized neuropsychological tests (e.g., Lezak, Howieson, & Loring, 2004; Mitrushina, Boone, & D’Elia, 1999; Strauss, Sherman, & Spreen, 2006). Compendia of assessment instruments that are suitable for administration by generic health professionals are also available, some of which focus on specific areas such as cognitive screening (e.g., Shulman & Feinstein, 2006; Strub & Black, 2000) and others address a range of functional areas (e.g., Herndon, 1997; Wade, 1992). In the years since these latter books were published, however, a multitude of new measures has appeared in the literature.

An important development, also since the publications of Herndon (1997) and Wade (1992), has been the introduction of the ICF. This is “a globally agreed framework and classification to define the spectrum of problems in functioning” (Geyh et al., 2004a, p. 137), which is likely to exert an increasing influence on clinical and research practice. Üstün, Chatterji, and Kostanjsek (2004) liken the ICF to the Rosetta Stone, enabling linkage of data across health conditions and interventions. Systematic reviews, such as that of Geyh et al. (2004b) examining assessment instruments used in clinical trials of interventions for stroke, showed how concepts can be successfully linked to the ICF. Eighty-three different ICF categories were measured in at least 10% of trials, and more than 100 additional ICF categories for less frequently measured concepts. The present volume draws on the ICF framework to classify instruments for ABI.

Methodology

A range of methods was used to identify and select instruments for inclusion in this compendium. The literature was examined using various procedures. Searches of the electronic databases, Medline and PsycINFO, were used to identify scales in cognate areas of ICF domains and categories pertinent to ABI (e.g., delirium, memory questionnaires, community participation). Additionally, searches were conducted of websites, along with hand-searching of reference lists, review papers, books, journals, as well as recommendations from colleagues and the author’s personal reference collection.

Candidate instruments were examined to identify those meeting the following five selection criteria for inclusion in the book:

1 An empirical study of the instrument, using an ABI population (or one at risk of ABI, e.g., older adults investigated for dementia), was published in a scientific, peer-reviewed journal.

2 Information was available on the psychometric properties of the instrument.

3 The instrument was suitable for administration by a generic health professional and was not restricted to a particular discipline (e.g., specialist neuro-psychological tests).

4 Administration and/or scoring procedures did not require specialized equipment, although some commonly available and portable stimulus materials were deemed acceptable (e.g., pen and paper, stopwatch, torch, picture cards, common objects).

5 The instrument was in current clinical and/or research use and available in the English language.

For reasons of space, it was not possible to include all pertinent measures identified. The guiding principle for the final selection was to provide a representative array of instruments across broad ranges of functioning, at the expense of exhaustive coverage of a narrow area. For some areas (e.g., general cognitive screening, self-care functions) there are large numbers of scales, but the item content and structure of many instruments are very similar, thereby raising the question of the value of a detailed inclusion of all scales in these areas. Consequently, instruments selected for inclusion in this volume are those with adequate psychometric properties, as well as those representing industry standards, in frequent use, or having special features.

The principle of a broad coverage of functional areas extended to including special-purpose instruments that are not necessarily in wide circulation (e.g., scales to assess minimally conscious states, establish mental competence), as well as those with special features (such as evaluation of neglected groups, e.g., people in advanced stages of dementia, patient/client-centred approaches). An effort was made to cover the spectrum of ABI, including progressive conditions (such as Alzheimer’s disease and other dementias), as well as non-progressive conditions (such as stroke, traumatic brain injury). Appendix A lists the clinical conditions for which the included instruments were originally developed and with which they are currently used.

Inevitably, there are omissions. Sometimes these will be author-related, and in particular the scope of the b...