A Review of Assessment Tools of Illness Representations - Springer Link

J Occup Rehabil (2008) 18:347–361 DOI 10.1007/s10926-008-9148-x

A Review of Assessment Tools of Illness Representations: Are These Adapted for a Work Disability Prevention Context? Marie-France Coutu Æ Marie-Jose´ Durand Æ Raymond Baril Æ Marie-Elise Labrecque Æ Suzy Ngomo Æ Daniel Coˆte´ Æ Annick Rouleau

Published online: 22 August 2008 Ó Springer Science+Business Media, LLC 2008

Abstract Introduction: Musculoskeletal disorders are among the main causes of short- and long-term disability. Aim: Identify the methods for assessing multidimensional components of illness representations. Methods: An electronic literature search (French, English) from 1980 to the present was conducted in medical, paramedical and social science databases using predetermined key words. After screening titles and abstracts based on a specific set of criteria, sixty-four articles were reviewed. Results: Qualitative approaches for assessing illness representation were found mainly in the fields of anthropology and sociology and were based on the explanatory models of illness. The interviews reviewed were: the Short Explanatory Model Interview, the Explanatory Model of Illness Catalogue and the McGill Illness Narrative Interview. Quantitative approaches were found in the health psychology field and used the following self-administered questionnaires: the Survey of Pain Attitudes, the Pain Beliefs and Perceptions Inventory, the Pain Beliefs Questionnaire, the FearAvoidance Beliefs Questionnaire, the Implicit Model of Illness Questionnaire, the Illness Perception Questionnaire, including its derivatives, and the Illness Cognition Questionnaire. Conclusion: This review shows the actual use and existence of multiple interviews and questionnaires in assessing multidimensional illness representations. All

M.-F. Coutu (&) M.-J. Durand M.-E. Labrecque S. Ngomo D. Coˆte´ A. Rouleau Centre for Action in Work Disability Prevention and Rehabilitation, Rehabilitation Department, Universite´ de Sherbrooke, 1111 StCharles Street West, Suite 101, Longueuil, QC, Canada J4K 5G4 e-mail: [email protected] R. Baril Institut de recherche Robert-Sauve´ en sante´ et sećurite´ du travail, Montreal, QC, Canada

have been used and/or tested in a medical context but none have been tested in a work disability context. Further research will be needed to determine their suitability for use in a work disability context. Keywords Representations Beliefs Attitudes Work disability prevention Rehabilitation Musculoskeletal disorder

Introduction Every year, large numbers of workers are unable to work because of a disability [1, 2]. Musculoskeletal disorders (MSDs) are among the main causes of short- and long-term disability [3]. The productivity loss resulting from poor employee health and/or work disability imposes a large social and economic burden, namely, $14.7 billion in Canada in 1998 [4]. Work disability was also recognized as a major economic and public health problem in the British Medical Journal in 2005 [5, 6]. Thus far, studies in work disability prevention have implicitly regarded the return to work (RTW) process as linear, where the progression toward health is steady until RTW. However, in reality, such a trajectory seems to be the exception rather than the rule [7]. It was found instead that patients/workers in a rehabilitation program for an MSD go through phases of progressing, plateauing and sometimes regressing, which may or may not lead to RTW [7]. In a qualitative study, various components of illness representations have been found to help trigger turning points in the RTW process [8, 9]. Illness refers to the subjective experience or personal perception of the presence of a disorder, discomfort, functional limitation and distress [10, 11]. A representation may be defined as a

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set of personal thoughts, beliefs, and attitudes concerning a particular ‘‘object,’’ which are all generally regarded as common-sense knowledge [18]. Illness representations formed by people in various medical contexts have been associated with the adoption of certain types of coping behaviors [12, 13]. A recent review of representation models has found various approaches and models by evaluating medical anthropology, health sociology and health psychology domains [14]. In the personal experience models, the individual is center-stage in the analysis. These models, including the fear avoidance model [15, 16], may focus on highly specific components of the representation such as pain beliefs and catastrophizing, thus, allowing for the prediction of specific behaviors such as avoidance of movement or activities [16–28]. The fear avoidance model helps provide an understanding of the development of a specific phobic behavior. However, it does not necessarily provide insight into an individual’s interaction with his or her environment. For example, avoiding a RTW may be associated with a feeling of dissatisfaction in which the work task is perceived as overly demanding and nongratifying [29, 30]. The same applies if a job represents a source of frustration or interpersonal tensions that could hinder task performance [31–33]. Other models, such as those stemming from lay theories, offer a broader view of the individual, who interacts with his or her environment. Among the lay theories, one model, in health psychology, has been extensively studied and validated across a wide range of illness conditions [13, 34– 38]. The commonsense model of self-regulation [39, 40] helps us to understand the representations patients/workers form of their illness and the impact of those representations on behaviors and emotional responses. According to this model, workers will gather information from different sources and form their own representations of their illness. These representations may fall into one or more of five components [39, 41]: (a) the identity of the illness, based on the diagnosis and the symptoms thought to be associated with it; (b) the timeline of the illness (acute, cyclic, or chronic); (c) the short- and long-term consequences; (d) the factors contributing to the illness, and; (e) the perceived control over the illness [42], which includes perceived selfefficacy [43, 44], treatment efficacy [43] and actual abilities. Based on these representations, patients will develop an action plan or coping strategies [45]. These five components are similar to the characteristics put forward in the explanatory models of illness developed by Kleinman in medical anthropology [46, 47]. These explanatory models include the definition of the problem, the symptoms perceived, the duration, the severity, the consequences perceived or expected, the causes, the appropriate treatment and the outcomes anticipated [46,

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48]. This latest descriptive model encompasses the five components of an illness representation, whereas the common sense model of self-regulation is an explanatory model of behaviors [14]. Building on existing health constructs and expanding these in work disability prevention will ultimately have important repercussions for the work rehabilitation process of injured workers. Indeed, having a broader view of how a worker understands his or her MSD can help healthcare providers better understand the worker’s actions or inaction [8, 9]. Assessing a worker’s representations can help provide clinicians with an understanding of the individual’s coping behaviors in terms of his or her interactions with his or her environment. Alternatively, to our knowledge, no critical review of methods or tools for assessing representations has been performed that covers the fields of psychology, sociology and anthropology. Such a review could help clinicians and researchers identify the best available tool for a particular need. This could also shape the direction of future research methods. Therefore, the aim of this study was to identify existing methods and tools for assessing illness representations in anthropology, sociology and health psychology.

Methods The methods for assessing illness representations in the published French- and English-language literature were critically reviewed. The search strategy adopted is illustrated in Fig. 1. Six bibliographic databases were consulted: Medline, Current Contents, CINAHL, PsycINFO, SOC Index and Francis. The timeframe included in this review started with the modeling of the theoretical foundation of the representation of illness by Leventhal et al. [39] and Kleinman in 1980 [46] and continued to May 2007. As illustrated in Fig. 1, three groups of key words served to identify articles for review: (1) the key words relating to methods or tools to assess representations; (2) the key words referring to medical condition; and (3) the key words relating to theoretical concepts. Combinations of key words were created by linking groups 1 and 2 with one group 3 items. Every combination was, therefore, composed as follows: [(methods or tools to assess representations) AND (medical condition)] AND [theoretical concepts]. As a result, items linked to theoretical concepts changed for every combination. The search strategy generated 707 references. The titles were first screened by two independent reviewers based on the following criteria: (1) pain representations or (2) more than one component of representation (identity, timeline, consequence, control and cause) or (3) method of measure. This left a total of 179 references for further independent screening based on the abstracts, following the same

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Fig. 1 Literature search strategy

Questionnaire (OR) Self report measure (OR) Measurement (OR) Scale (OR) Map (OR) Assessment (OR) Pictorial (OR) Schemata (OR) Appraisals

Illness (OR) Chronic illness (OR) Pain (OR) Low back pain (OR) Physical symptoms (OR) Injury (OR) Disease (OR) Sick (OR) Disability (OR) Musculo$

AND

Keywords group 2: Medical conditions

Keywords group 1: ature / types of interviews Nature

Medline, Current contents, CINAHL, PsycINFO, SOC Index, Francis (1980 – Mai 2007)

AND Keywords group 3: Theoretical theoretical concepts Self regulation model Common sense model Meaning

Beliefs

Catastrophizing

Implicit model Conviction

Self efficacy AND Control

Representation

Perception AND Beliefs

707 references

179 abstracts

64 papers

criteria, reducing the number to 64 articles. An acceptable level ([90%) of inter-rater reliability was reached for all screening steps [49]. A grid was created for the content analysis of selected articles. The grid included the identification of the framework on which the tools were based, purpose, psychometrics components (i.e., validity, reliability, number of questions or items or dimensions), limitations and strengths. An acceptable inter-rater reliability was also reached for the content analysis of the articles between two independent evaluators.

Results A total of 26 methods and tools (including ramifications) were found. As presented in Table 1, the majority of these (n = 14) addressed a one-dimensional aspect of pain representation, such as pain symptoms, consequences, selfefficacy/control [50–63]. Reviews of one-dimensional pain measurement tools have been previously performed [64–66].

Therefore, this review focused on multidimensional methods that assessed more than one component (n = 10) of illness representations [39, 46], leaving three interviews and seven self-administered questionnaires. These can be categorized into qualitative and quantitative approaches. Qualitative Approaches The qualitative approaches for assessing illness representations have been found mainly in anthropology and sociology fields. In anthropology, phenomenology has been widely used to describe representations and personal experiences of health and illness. Representations are viewed as part of a social process, in which they are constructed over time and through interaction with the environment [67, 68]. In sociology, interactionism documents the subjective aspects of social life rather than comparing the validity of an individual’s beliefs or representations with biomedical knowledge, which might be regarded as the ‘‘objective reality’’ [67, 69]. In these fields,

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Table 1 Tolls assessing one-dimensional aspect of pain representation Component assessed

Methods/Tools

Identity

Pictorial Representation of Illness and Self Measure [50] Pain Catastrophizing Scale [63] Pain and Impairment Relationship Scale [52] Pain Information and Belief Questionnaire [54] Cognitive Risk Profile for Pain [55]

Consequences

Back Beliefs Questionnaire [53]

Control/Selfefficacy

General Self Efficacy Scale [56] Pain Self-Efficacy Questionnaire [57] Chronic Pain Self-Efficacy Scale [58] Back Pain Self-Efficacy Scale [59] Beliefs about Pain Control Questionnaire [60] Multidimensional Locus of Pain Control Questionnaire [61] Pain Locus of Control Questionnaire [62] Functional Abilities Confidence Scale [51]

illness representations are believed to be accessed mainly through interviews. All three interviews reviewed were based on the explanatory models of illness [46]. More specifically, they were the Explanatory Model of Illness Catalogue (EMIC) [70] the Short Explanatory Model Interview (SEMI) [71], and the McGill Illness Narrative Interview (MINI) [72]. Summarized characteristics of these interviews are presented in Table 2. Explanatory Model of Illness Catalogue (EMIC) The EMIC is a semi-structured interview that documents participants’ idiosyncratic illness experience in their own words, while reflecting influences within and outside of the culture [70, 73]. The EMIC is based on the eight questions initially presented by Kleinman1 [46]. According to Weiss [73], the elaboration of the explanatory model framework by Kleinman in 1980 intentionally lacked specificity to prevent undermining the sensitivity to culture. With the EMIC, Weiss [70, 73] offered a reliable method for comparing various illness representations within and between groups. Therefore, to facilitate its use in cultural 1

(1) What do you call your problem? What name does it have? (2) What do you think has caused your problem? (3) Why do you think it started when it did? (4) What does your sickness do to you? How does it work? (5) How severe is it? Will it have a short or long course? (6) What do you fear most about your sickness? (7) What are the chief problems your sickness has caused for you? (8) What kind of treatment do you think you should receive? What are the most important results you hope to receive from the treatment?

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epidemiology, an operational formulation of the explanatory models was conducted using the study of leprosy in non-Western and non-European cultures (Bombay, Bangalore, Ranchi and Banaras, India). Leprosy was chosen since it represented an important stigmatizing health problem with physical components and emotional depressive reactions [70]. Following Weiss’s framework, representations in the explanatory model are associated with coping strategies and adaptation. The EMIC contains four sections: patterns of distress, perceived causes, help seeking and treatment and general illness beliefs. First, patterns of distress addresses the problems emerging from the illness condition, such as medical symptoms, social and economic consequences, and social stigma. Second, perceived causes documents representations about why and how the participant has been so affected. Third, the section on help-seeking and treatment includes the participant’s initiatives and approaches to get help from health professionals, family and the social environment. The fourth section, general illness beliefs, documents the current illness representations within the broader context of the participant’s other previous illness experiences. Each section ends with an open-ended question asking the participant to summarize and highlight the most important aspects of the representations and to identify relationships between the answers given. In the original Weiss study, two independent evaluators observing the same interviews assessed the inter-rater agreements on selected items of the EMIC. Kappa values for the pattern of distress section ranged from .74 to .93; for perceived causes .79; help seeking .67 to .77 and general illness beliefs .64 [73]. In other studies, inter-rater agreement kappa values ranged from 0.75 to 0.79 [74, 75]. The EMIC offers a qualitative method that compares various illness representations within and between groups. It was initially developed in a non-Western, non-European culture, which helps to limit cultural bias. It was also used for various illness conditions, such as chronic fatigue syndrome, somatoform disorders and depression in more than 13 languages and cultures. In general, interviews rely on the ability of the interviewer to facilitate the information exchange. To reduce the impact of the interviewer, the authors included a short vignette or metaphor at the beginning of each section to help the participant understand the aim of the interview and to reinforce speaking freely and not looking to give right or wrong answers. The EMIC is presented as a mixed method, allowing for both qualitative and quantitative analyses. However, its use remains essentially qualitative. In fact, our review found only one article using it as a mixed method [76]. Finally, the feasibility of using the EMIC in large-scale cultural epidemiology has been criticized because of the length of the interview [71].

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Table 2 Psychometric properties comparison of illness representation qualitative tools Explanatory model

Purpose

EMIC (70)

SEMI (71)

Document participant’s idiosyncratic illness experience

Understand the mental illness experience Document illness experience in a population by identifying causal and other health seeking help for medically unexplained beliefs symptoms Identity

Identity

Causes

Causes

Consequences

Consequences

Control

Control

Control

Timeline

Timeline

Timeline

Pattern of distress

Personal background

Initial narrative

Perceived causes

Nature of problem

Prototype

Help seeking and treatment General illness beliefs

Help-seeking behaviors

Explanatory Model

Interaction with physician/paramedical

Optional

Mental illness representations

- Individual personal experience

Components of illness Identity representations Causes measured Consequences

Themes/Scales

MINI (72)

- Impact of illness on life Validity/Reliability Internal consistency

–

–

–

Test-retest reliability

–

–

–

Inter-rater reliability

.67–.79

–

–

Responsiveness

–

–

–

Content validity

–

–

–

Discriminant validity

–

–

–

Short Explanatory Model Interview (SEMI) The SEMI [71] is a short semi-structured interview elaborated to address the time limitation of the EMIC. The SEMI documents mental illness experiences following the same theoretical background as the EMIC. Five sections are covered in the interview: personal background, nature of presenting problem, help-seeking behaviors, interaction with physician/paramedical and mental illness representations. The personal background section evaluates sociodemographic data. The section on the nature of the problem covers the main component of the participant’s illness representations, namely, the name of the problem, reason for consulting, perceived causes, consequences, severity and its physical and psychological effects, as well as familial, social and occupational life disruptions. The help-seeking behavior section documents various contacts made with medical/ paramedical sources and the participant’s satisfaction and expectation. The illness beliefs section presents three clinical vignettes concerning common mental disorders: depression, phobia and somatization. These vignettes are followed by open questions to evaluate the individual’s attitudes about mental disorders and to determine if these are viewed as illnesses.

The SEMI was validated with Caucasians, AfricanCaribbeans and Asians living in London and used in Harare in Zimbabwe [71]. Consequently, its use is not restricted to western culture, mainly because it was not elaborated with technical or cultural references in the language. Because the vignettes do not refer to the individual’s own mental health difficulties, they have the advantage of limiting social desirability bias. Moreover, the structured format of the SEMI helps limit the duration of the interview, with an average length of 30–45 min. The structured format reduces the risk of relying on the interviewer’s ability to obtain information from the participant, however, it also restricts the potential of emergence of new material not covered by the predetermined questions. McGill Illness Narrative Interview (MINI) The original version of the MINI [77] was a semi-structured interview designed to document illness experiences in a population seeking help for medically unexplained symptoms [77]. This interview was elaborated to produce illness narratives allowing more in-depth discourse analysis compared to mixed methods. It is based on Kleinman’s [46] and Young’s [78, 79] assumptions that individuals’

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illness experiences are based on multiple representational schemas and modes of reasoning, which may produce complex and inconsistent, or contradictory illness narratives. A generic version of the MINI was created for use with various health problems and cultures [72]. The interview is composed of three main sections: (1) initial narrative, (2) prototypes, and (3) explanatory models. The first section is the least structured and allows the interviewee to tell his/her story in his/her own words. The second section allows the individual to reveal his/her observed prototypical experiences and how these help explain their current health problems and their health behaviors. Prototypes, also known as stereotypes, are described as hypotheses on illnesses and their treatment [80, 81]. The third section focuses on causal attributes. Depending on the context, two other interview sections may be included. One concerns the individual’s personal experience with health care seeking and service utilization, as well as treatment response and compliance. The second optional section documents the impact of the illness on one’s life and the coping strategies employed. These optional sections provide the opportunity to document the interactions between the individual and his or her environment. Finally, the interview ends with an open-ended question to give the individual an opportunity to add any relevant information. Nearly 2 h are needed to complete the interview. The MINI has the advantage of allowing unprompted answers based on the patient’s own experience. It is also possible to explore the different reasoning types the participant makes between specific meanings and health behaviors [82, 83]. Treatment compliance and the patient’s satisfaction with treatment can also be documented. The MINI provides a comprehensive understanding of an individual’s illness representation and behavioral responses. Its major limitation is the average interview length of 2 h. For workers with persistent pain, this could prove difficult with respect to their ability to remain still and their ability to maintain concentration for this length of time. No prospective studies with multiple interviews were reported. The risks of attrition in this type of design may be higher because of the long duration. Quantitative Approaches We reviewed the following self-administered questionnaires measuring more than one component of illness representations: (1) Survey of Pain Attitudes [84]; (2) Pain Beliefs and Perceptions Inventory [85]; (3) Pain Beliefs Questionnaire [86]; (4) Fear-Avoidance Beliefs Questionnaire [87]; (5) Implicit Model of Illness Questionnaire [88]; (6) Illness Perception Questionnaire [89], including a version reviewed by Moss-Morris et al. [90] and a short

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version by Broadbent et al. [91]; and (7) Illness Cognition Questionnaire [92]. Summarized characteristics of these self-administered questionnaires are presented in Table 3. The first four questionnaires address two to three components of the illness representation, the other questionnaires document the all the components of illness representation. Survey of Pain Attitudes The Survey of Pain Attitudes (SOPA) assesses five chronic pain attitudes [84, 93–95]. This tool assesses two components of illness representation: consequences and control. The original English version contains 57 items rated on a 5-point Likert scale varying from ‘‘This is very untrue for me’’ to ‘‘This is very true for me’’. The self-administrated questionnaire assesses patient’s beliefs about: (1) pain control, (2) disability, (3) medical cure, (4) solicitude, (5) medications, (6) emotional responses, and (7) harm. The questionnaire has a good internal consistency, with Cronbach alpha varying from 0.71 to 0.81 for the 7 subscales [93]. Also, the test-retest reliability demonstrated good stability over a six week interval (r = 0.63–0.68). A French version is available and was found reliable [94]. A study [93] using the SOPA found that patients having pain who perceived themselves to be disabled and believed they should not exercise reported higher physical dysfunction on the Sickness Impact Profile (SIP) [96]. Also, emotion and disability scales from the SOPA predicted psychosocial dysfunction on the SIP for patients reporting low and moderate pain intensity. The SOPA is a reliable, simple and quick questionnaire to administer in a disability prevention context. Computer programs can support the scoring and analysis. Pain Beliefs and Perceptions Inventory The Pain Beliefs and Perceptions Inventory (PBPI) assesses the relationship between pain beliefs and behavioral manifestations [85]. This tool assesses two components of illness representations: causes and timeline. The PBPI contains 16 items rated on a four point Likert scale ranging from ‘‘very true’’ to ‘‘very untrue’’. Originally, factorial analysis identified 3 subscales: (1) mystery—perception of pain as mysterious and poorly understood; (2) self-blame— the belief that pain is caused by or maintained by the patient and (3) time or pain stability beliefs—the belief about pain as an enduring aspect of the patient’s life [85]. The time subscale was later split in two subscales: (1) pain permanence—reflecting the belief that pain will be enduring and (2) pain constancy—the belief that pain is currently constant and pervasive in its effects on daily life [97, 98]. These subscales were adopted in various studies [99, 100]. Cronbach alpha revealed good internal

Consequences

Consequences

6 Weeks

– –

–

Responsiveness Content validity

Discriminant validity

.63–.68

Test-retest reliability

Inter-rater reliability

71–.81

Internal consistency

Validity/Reliability

Harm

Emotion

Medications

Solicitude

–

.33–.41 –

–

–

74–.77

FAB physical activity

–

– –

–

–

.73 & .70

Psychological pain beliefs

Organic pain beliefs

FAB work

Pain control

Disability Medical cure

Themes/scales

Measure beliefs, causes, consequences about the experience of pain

Measure beliefs on how physical activities & work affect low back pain

Assess chronic pain attitude

Control

Causes

Causes

PBQ [86]

Consequences

FABQ [87]

Identity

Purpose

Components of illness representations measured

SOPA [84]

Common sense model of self-regulation

–

– –

–

–

66–.88

Pain constancy

Self-blame Pain permanence

Mystery

Assess relationship between pain beliefs and behavioural manifestations

Timeline

Identity

PBPI [85]

Table 3 Psychometric properties comparison of illness representation quantitative tools

Consequences Control Timeline




Timeline Consequences

Personal responsibility

–

– –

–

–

79–.92

Variability in time

Causes Causes

.17–.35

– –

3 Weeks

.46–.88

–

– –

–

42–.75

–

Emotional representations

.79–.89

Timeline cyclical Emotional representations

Illness coherence

Treatment control

Personal control

Timeline Consequences

Identity

Timeline cyclical

Illness coherence

Treatment control

Personal control

Identity

Seriousness

Controllability

Measure components of illness representations


–

– –

–

r [ .67

.84–.91

Acceptance Benefits

Helplessness

Assess the representations of chronic illnesses

Causes

Causes


Identity

Identity

Causes

Identity

Identity

ICQ [92]

Brief-IPQ-R [91]

IPQ-R [90]

Causes

IMIC [88]

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consistency (0.64–0.83) [98]. The four subscales showed low to non-significant correlations with the participants coping strategies [99] and weak relationships with anxiety and catastrophizing [98]. This questionnaire has been used in a disability prevention context, but not directly related to work disability. Pain Beliefs Questionnaire The Pain Beliefs Questionnaire (PBQ) [86] measures beliefs about the experience of pain, its causes, consequences and the factors that influence its severity. This tool assesses three components of illness representations: causes, consequences and control. It contains 12 items rated on a 6 point Likert scale (0 = never to 4 = always). This questionnaire was developed after the PBPI, the SOPA and the Beliefs about Pain Control Questionnaire (BPCQ) [60]. It was designed to specifically address the perceptions of psychological and organic attributions of the cause of the persistent pain. The two scales are: the Organic Pain Beliefs Scale, reflecting that pain is organic (‘‘Pain is the result of body damage and it’s a sign that something is going wrong with the body’’), and the Psychological Pain Beliefs Scale, covering the impact of psychological factors on the experience of pain (‘‘Thinking about pain or being anxious makes it worse’’). Cronbach coefficients showed good internal consistency (0.73 & 0.70) for Organic and Psychological subscales, respectively. The two factors were corroborated with factor analysis accounting for 68% of the variance [86]. Also, construct validity was supported with significant correlations observed with Chance and Powerful Others scales from the Multidimensional Health Locus of Control (MHCL) [101] with the Organic Pain Beliefs Scale. The Internal scale from the MHCL correlated significantly with the Psychosocial Pain Beliefs Scale of the PBQ. For participants having persistent low back pain, Walsh & Radcliffe [26] found that higher scores on the Organic Pain Beliefs scale were associated with higher disability level. The PBQ appears to be a reliable, simple and quick questionnaire to use in a context of persistent pain. Its applicability in a work disability context remains to establish. Fear-Avoidance Beliefs Questionnaire The Fear-Avoidance Beliefs Questionnaire (FABQ) [87] is based on the fear avoidance behaviour model [15, 16]. The FABQ assesses two components of illness representations: causes and consequences. Its 16-items are rated on a 7-point Likert scale (strongly disagree to strongly agree). It measures patients’ beliefs about how physical activities and work affect their low back pain, following two subscales: (1) fear-avoidance beliefs about work; (2) fear

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avoidance beliefs about physical activity. Three items are derived from the Harm scale of the SOPA. The Cronbach alpha for fear-avoidance beliefs about work is 0.88 and for fear avoidance beliefs about physical activity is 0.77 [87]. The Kappa coefficient was 0.74 after a 48-h interval [87]. Responsiveness was assessed and revealed low to moderate effect size for the physical activity (D = 0.41) and work subscales (D = 0.33) respectively, after 6 months in chiropractic programs [102]. According to Waddell and collaborators [87], a similar conceptual basis exists for the FABQ and the SOPA. The difference is that the FABQ considers work. Fear-avoidance beliefs about work and about physical activities explained significant variance for disability and work loss [87]. The FABQ has long been recommended as a predictor in low back pain studies due to its capacity to predict disability and work loss [103]. Implicit Models of Illness Questionnaire The Implicit Model of Illness Questionnaire [88] measures the components of illness representations based on both the Common Sense Model of self-regulation [40] and the explanatory models of illness [46]. It contains 24 items rated on a seven-point scale varying from ‘‘strongly agree’’ to ‘‘strongly disagree’’. A factorial analysis identified four dimensions. The first, seriousness, includes the degree to which an illness is serious, contagious, caused by germs or weather, chronic, permanent, does not go away on its own, has symptoms of a common cold, and requires medical attention. The second dimension, personal responsibility, includes beliefs about what or who might be responsible for the disease and/or resolution, such as stress, diet, exercise, not enough rest and personal behavior. The third section, controllability includes the extent to which the disease is controllable by the individual or outside forces. Finally, the last section concerns variability in time, which includes whether symptoms or other aspects of the disease are changeable and change over time. The original English version was validated using healthy individuals and patients with different health problems, including arthritis, multiple sclerosis and human immunodeficiency virus (HIV) infection [104]. Internal consistency was considered good with Cronbach’s alpha varying from .79 to .92 for each dimension [88]. This questionnaire can be used across various illnesses and populations. In this study, the authors identified social representations [88]. Social representations are a common reference point encompassing a group of individual representations that mirror a system of collectively shared knowledge [105, 106]. Use of this questionnaire is limited by its restricted psychometric properties. Also, based on the Common Sense Model of self-regulation [40] and the explanatory models of illness [46], the dimension on

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seriousness should include only items related to consequences, rather than the timeline or causes. Illness Perception Questionnaire (IPQ) The IPQ was initially developed by Weinman and collaborators [89]. This questionnaire measures the five cognitive components of illness representations (identity, consequences, timeline, control/cure and cause), based on the Common Sense Model of self-regulation [39, 40]. The emotional representation of illness was not included in the original questionnaire. The psychometrics properties have been assessed in different chronic illness populations, such as chronic fatigue syndrome, rheumatoid arthritis, and pain [13, 37, 107– 114]. The low internal consistency of the control/cure and timeline dimensions led to two separated factors each [90, 115]. For these reasons, a revised version (IPQ-R) was elaborated [90]. The IPQ-R [90] is composed of 70 items divided into three sections. First, identity contains 14 symptoms commonly experienced. The participant is asked to answer two questions related to the symptoms: ‘‘I have experienced this symptom since my illness’’ and ‘‘This symptom relates to my illness’’ which are rated on a yes/no scale. This addition was made to measure somatisation and the attribution of symptoms to the illness. The last two sections are rated on a five-point scale, varying from strongly disagree to strongly agree. The second section contains 38 items evaluating seven dimensions: (1) timeline (acute/chronic); (2) consequences; (3) personal control; (4) treatment control; (5) illness coherence; (6) cyclical timeline; and (7) emotional representation. The third section evaluates the causal dimension and is composed of 18 items. The study’s principal components analysis identified four dimensions: psychological attributions; risk factors; immunity, and accident or chance [90]. The IPQ-R was translated into eighteen different languages, but data on transcultural validation was not available for every translation. The English version of the IPQ-R was validated for eight different medical problems, including diabetes, rheumatoid arthritis, myocardial infarction, asthma, multiple sclerosis, acute and chronic pain [90]. Psychometrics properties revealed good internal reliability (a .79–.89). Correlations among factors were low, except for the personal control and treatment control (r = .61), illness coherence and both control factors (r = .56 and .74) and, finally, risk factor attributions and psychological attributions (r = .64) [90]. Assessment of discriminant validity showed a weak to absent relationship (a .17–.35) with the Positive and Negative Affect Schedule (PANAS) [116]. Predictive validity assessed with the Sickness Impact Profile (SIP) [96] demonstrated that illness

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severity measures accounted for a significant proportion of the variance (42%) in the level of disability in multiple sclerosis patients [116]. Test-retest reliability was assessed after a three-week interval and showed good stability over this period with correlations ranging from .46 to .88 [90, 117]. Due to the elevated number of items, a shorter version of the questionnaire was elaborated [91]. This version consists of eight items rated on a ten-point scale summarizing each subscale of the IPQ-R. Five items measure the cognitive representation of illness (consequences, timeline, personal control, treatment control, identity), two items measure the emotional representations (concerns and emotions) and one item measures the understanding of the illness (coherence). An open-ended question assesses the perception of the causes of the illness. The shorter questionnaire’s validity was assessed for different health problems (N = 891) [91]. The test-retest reliability at three- and six-week intervals was satisfactory (r = .42–.75). Scores on the Brief IPQ-R to the IPQ-R version revealed moderate to strong correlations (r = .46–0.63), with the exception of the personal (r = .33) and treatment control (r = .32) subscales [91]. For a group of patients with myocardial infarction, results showed that slower RTW was significantly associated with higher concerns (r = 0.43) and with higher treatment control beliefs (r = 0.44) [91]. In that group, the predictive validity of the Brief IPQ-R was demonstrated because its predictions were accurate 3 months after the myocardial infarction (consequences, identity, concern and emotional response dimensions (P \ .05)) when cardiac anxiety was assessed with the Cardiac Anxiety questionnaire, vitality and mental scales with the SF-36, and quality of life (personal control, identity, concern, understanding and the emotional response (P \ .05)) with the Seattle Angina questionnaire. Higher scores on identity, timeline, consequences, and cyclical dimensions characterized stronger beliefs about the number of symptoms, the chronicity, the negative consequences, and the cyclical nature of the condition. For the personal control, treatment control and coherence subscales, higher scores represented beliefs about the controllability of the illness and a personal understanding of the illness. More recently, strong associations (RR of 1.4 and over) were found between the consequences, timeline acute/chronic, personal control and treatment control scores of the IPQ-R and disability in patients having pain for more than a month, in a primary care setting [118]. The three versions of the IPQ have been widely used in studies exploring illness representations [37, 119–125]. Also, a meta-analysis [126] supported the use of this instrument in clinical settings and in research. Although the IPQ and its derivatives are based on the common sense model of self-regulation [40] they focus on one step of the model: the assessment of the illness representations.

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Illness Cognition Questionnaire (ICQ) The Illness Cognition Questionnaire [92] assesses the representation of chronic illnesses with 18 items rated on a four-point scale varying from ‘‘not at all’’ to ‘‘completely’’. The conceptual basis of this questionnaire differs from those previously reviewed. It has been postulated that illness cognitions are influenced by physical or psychological stressors, coping strategies and available social support [127]. Based on Beck cognitive theory [128–130], cognitions will influence the development, maintenance and modification of emotions and, consequently, the psychological well being of the individual. Three illness cognitions reflecting different ways of re-evaluating the inherently aversive nature of chronic illness conditions were assessed: (1) helplessness as a way of emphasizing the aversive meaning of the disease; (2) acceptance as a way to diminish the aversive meaning; and (3) benefits as a way of adding a positive meaning to the disease. The English version was validated in patients with rheumatoid arthritis and multiple sclerosis [92]. The testretest reliability was high (r [ .67) and the Cronbach’s alpha demonstrated good internal consistencies (a .84–.91) [92]. Correlations between the factors were also acceptable (r = -.03 to -.46). This tool also presented good internal validity [92]. Good concurrent and predictive validity were observed using measures of physical and mental health, personality dimensions, coping strategies and social support [92]. Also, the multidimensional approach of the illness representation by assessing the adaptive and maladaptive cognitions can be used in chronic diseases. Information on scoring interpretations or norms was not available. Further validation is required to assess the psychometrics properties, such as construct validity related to perceived control (self-efficacy, health locus of control), to assess chronic illness populations.

Discussion This article identified methods and tools for assessing components of illness representations in the fields of psychology, anthropology and sociology. Qualitative interviews have been found mainly in anthropology and sociology and emerged from Kleinman’s explanatory models of illness. This method is coherent with the premise in these fields that illness representations are mainly accessible through interviews. The main advantage of the interview format is its capacity to allow new material/ information to emerge, which could lead to new findings. Also, not only was the interactionist approach [131] taken into consideration in the conceptual model, but it was also documented in the interviews. Since work disability studies

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are based on a person-environment paradigm, this is a major advantage. As for the specific interviews, the MINI [72] and the EMIC [70] have a higher respondent burden, because of their length, when compared to the SEMI [71]. These interviews are adaptations of Kleinman’s [46] basic questions. No studies have compared these interviews. For example, it is not clear if the MINI is superior to the other interviews in identifying reasoning processes. These differences, therefore, remain conceptual. Quantitative measures of the components of illness representations essentially emerged from the health psychology field, for generic questionnaires. However, specific multidimensional questionnaires emerged from the rehabilitation field. When based on an illness representation model, these measures mainly emerged from the common sense model of self-regulation [39]. With the exception of the Brief IPQ-R, the respondent burden was comparable, since the length of the questionnaires was not significantly different. When compared to the qualitative approaches, both the respondent burden and the administrative burden are lower. Differences in psychometric properties were found between quantitative methods. Table 3 presents a summary of the findings. From our review, the IPQ-R measures all the components composing illness representations. It is also one of the most widely studied and validated tools, however, its responsiveness must still be established. This is an important aspect since the most interesting feature of the common sense model of self-regulation [39] is that it includes the dynamic component of illness representations. This review also allowed identifying two different but comparable ways to assess all illness representation components. One’s proposing use one multidimensional questionnaire [118] while others propose to combine two multidimensional questionnaires: the SOPA and the PBPI for example [100, 132]. Multidimensional questionnaires emerging from the rehabilitation field have the advantage of being already in use in the disability prevention context. These questionnaires should, however, be combined with other measures to document all five components of illness representations. For example, when the PBPI is used alone, it is weakly associated with coping strategies [99] and emotional responses [98]. In fact, Weinman [89] found that the IPQ-R explained a greater percentage of the variance in disability and well being than when assessing only one dimension. This highlights the need to study the relationships across illness representations components for a better understanding of the way workers explain/represent their disability. Indeed, one of our qualitative studies found that representations have been associated with the adjustment and response to a work rehabilitation program [8, 9].

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Both qualitative and quantitative methods have been used in clinical or research contexts. To increase the implementation of such measures in the clinic, it would be important to limit the administrative and respondent burdens. Therefore, as a short and consistent measure we suggest the Brief IPQ-R, which takes only few minutes to administer. Following completion of the questionnaire, the clinician could take note of the extreme scores on each item and ask the patient to explain those results. In fact, the items on this questionnaire are similar to Kleinman’s initial questions. Therefore, the benefit for the clinician would be to use the structure of a questionnaire to quickly have access to the patients’ representations. For research purposes, obviously the research question and the available data in the literature will guide the researcher to choose qualitative, quantitative or even mixed methods. Multidimensional assessment of illness representations has already been included in studies in disability prevention. For example, studies using the SOPA and the PBPI can address the control, consequences, causes and time-line. These do not, however, cover the identity category [100, 132]. Although these questionnaires are specific to MSD, they do not specifically address work disability. Generic questionnaires measuring all the components of illness representations are mainly found in a medical context, rather than disability prevention. They do not provide any information on patient interaction with the environment, which could have a significant influence on patient representations. Professional reintegration of workers is a complex phenomenon requiring an approach that takes into account the workers’ interaction with their environment. Consequently, based on our critical review of the existing tools, it is not possible, without further adaptation and validation, to use a self-administered questionnaire that would assess an individual’s work disability representations for research purposes. Because they are highly adaptable, qualitative approaches are easier to apply to work disability prevention research at this time. However, such studies do limit the number of participants. This critical review has helped to identify tools to measure illness representations from both Frenchand English-language literature. Previous studies have examined representations and assessment tools in a compartmentalized way, whereas this review pooled the different tools available for assessing illness representations from the fields of anthropology, sociology and psychology. Although the search strategy was performed with broad key words and two independent reviewers reduced the selection bias, some tools might have been overlooked, such as those developed within a specific study. Conversely, this review was performed to identify valid and theoretically based assessment tools.

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Conclusion This critical review of methods for assessing illness representations analyzed the theoretical framework, the purpose, and the available psychometric properties of ten tools from qualitative and quantitative methods. These methods were reviewed to help both clinicians and researchers identify the best available tools for their respective needs. Based on the information reviewed, future studies in work disability prevention must adapt and further validate the disability representation assessment tool. Acknowledgements This study was supported by a grant from the Institut de recherche Robert-Sauve´ en sante´ et en sećurite´ au travail (IRSST) and by the Research Chair in Work Rehabilitation (Foundation J. Armand Bombardier and Pratt & Whitney Canada).

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