Recognising ethnocultural diversity in chronic pain assessment: validation of the Pictorial Representation of Illness and Self Measure (PRISM) for use with culturally diverse communities

BackgroundA comprehensive and accurate assessment of pain is critical for successful pain management. However, there is a lack of reliable and valid assessment tools for exploring multidimensional aspects of the chronic pain experience in culturally and linguistically diverse communities. This study investigates the reliability and validity of the Pictorial Representation of Illness and Self Measure + (PRISM+) for evaluating pain-related suffering and the sociocultural context of chronic pain within culturally and linguistically diverse patient cohorts.MethodThree prospective validation studies are reported for three culturally and linguistically diverse communities. Two hundred and fifty-one patients with chronic pain who self-identified as Assyrian (n = 85), Arabic (n = 83) or Vietnamese (n = 83) completed a PRISM+ assessment, alongside a battery of standardised pain assessments. To evaluate construct validity, the position of the ‘pain’ disk placement was correlated with the Brief Pain Inventory (BPI), Depression Anxiety and Stress Scale (DASS), and the Short-Form 36 Health Survey (SF-36). For content validity, thematic analysis of patient narratives accompanying each disk placement was conducted. Test-retest reliability of repeated ‘pain’ and five additional disks (PRISM+) values was analysed using intra-class correlation coefficients.ResultsThe PRISM pain assessment demonstrated moderate to good test-retest reliability for Arabic (ICC 0.76; 95% CI 0.65–0.84), Assyrian (ICC 0.65; 95% CI 0.50–0.76) and Vietnamese (ICC 0.82; 95% CI 0.73–0.88) patients. Moderate correlations between the PRISM ‘pain’ disk and sub-scores for the BPI, DASS and SF-36 were found (p < 0.001). Patient interpretations of the ‘pain’ disk aligned with accepted definitions of suffering, supporting content validity for PRISM. For the additional disks (PRISM+), moderate to good test-retest reliability (ICC 0.67–0.88) was observed and qualitative analysis highlighted each disk reflected social and cultural values.ConclusionThe PRISM demonstrates acceptable psychometric properties for measuring pain-related suffering for participants with chronic pain across three culturally and linguistically diverse communities. The use of additional disks (PRISM+) presents a reliable and valid option for exploring social and cultural dimensions of chronic pain in clinical encounters.

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title: Assessment of patients with chronic pain
abstract: Pain has always been the most common reason why patients seek medical attention. A World Health Organization survey of ± 26 000 primary care patients on five continents demonstrated a prevalence of persistent pain (lasting longer than three months) in 22% of participants, mostly associated with marked reduction in several indicators of well-being (e.g. interference with activities and psychological functioning).

title: The state-of-"cultural validity" of self-report pain assessment tools in diverse older adults.
abstract: Pain continues to be a significant problem for older adults worldwide and a challenge for health care clinicians and researchers in assuring accurate identification and tailored treatment approaches. Attention has been devoted in recent years to development of pain assessment tools that are reliable and valid for use with older adults, including self-report scales and pain observation tools.



This integrative review examines face, content, and construct validity relative to the research development, linguistic translation, and clinical implementation of self-report pain assessment tools in culturally diverse older adults.



Many self-report pain assessment tools have not been tested and validated in many older adults of diverse cultures. As a result, self-report tools are limited in their accuracy and ability to capture the cultural distinctions that impact pain intensity ratings.



The multiculturalism of health care and the use of existing pain assessment tools globally require that clinicians and researchers consider tool validity that incorporates the individual's cultural system in order to provide quality pain assessment. This article addresses one aspect of tool development and application across populations, the validation of self-report pain assessment tools for culturally diverse older adults. Recommendations for each the research and clinician are provided to assist in development, translation, and use of various self-report pain assessment tools.

title: Systematic review of cross-cultural adaptations of McGill Pain Questionnaire reveals a paucity of clinimetric testing.
abstract: The objectives of this study were to identify the available cross-cultural adaptations of the McGill Pain Questionnaire (MPQ), to describe the clinimetric testing that has occurred for each adaptation and to evaluate both the quality of the adaptation procedures and the clinimetric testing for each version.



This study is a systematic review. Searches of the MEDLINE, EMBASE, and CINAHL databases were used to identify relevant studies. Data on the quality of the adaptation procedures and clinimetric testing were extracted using current guidelines.



Forty-four different versions of the MPQ were identified representing 26 different languages/cultures. Regardless of the method of cross-cultural adaptation, clinimetric testing of the adapted questionnaires was generally poorly performed and for 18 versions no clinimetric testing has been undertaken.



Although the MPQ has been adapted into a large number of languages, because of inadequate testing most of the adaptations have unknown clinimetric properties. This situation means that users should be cautious when interpreting scores from adapted questionnaires.

title: Transcending the dualisms: towards a sociology of pain
abstract: Theories of pain have traditionally been dominated by biomedicine and concentrate upon its neurophysiological aspects, both in diagnosis and treatment. Hence, scientific medicine reduces the experience of pain to an elaborate broadcasting system of signals, rather than seeing it as moulded and shaped both by the individual and their particular socio-cultural context. Although pain lies at the intersection between biology and culture, making it an obvious topic for sociological investigation, scant attention has been paid to understanding beliefs about pain within the study of health and illness. A major impediment to a more adequate conceptualisation of pain is due to the manner in which it has been ‘medicalised’, resulting in the inevitable Cartesian split between body and mind. Consequently, the dominant conceptualisation of pain has focused upon sensation, with the subsequent inference that it is able to be rationally and objectively measured. Yet as well as being a medical ‘problem’, pain is an everyday experience. Moreover, sociological and phenomenological approaches to pain would add to, and enhance, existing bodies of knowledge and help to reclaim pain from the dominant scientific paradigm. In this paper, it is argued, firstly, that the elevation of sensation over emotion within medico-psychological approaches to pain, can be shown to be limiting and reductionist. Secondly, we attempt to show how insights from the newly-emerging sociological arenas of emotions and embodiment provide a framework which is able to both transcend the divide between mind and body and to develop a phenomenological approach to pain. Finally, in order to bring the meaning of pain into fuller focus, we draw attention to the importance of studying theodices and narratives, as well as the cultural shaping and patterning of beliefs and responses to pain.

title: Integrating culturally informed approaches into physiotherapy assessment and treatment of chronic pain: a pilot randomised controlled trial
abstract: To evaluate patient engagement with, and the feasibility of, a novel, culturally adapted physiotherapy pain management approach.  A participant-blinded and assessor-blinded pilot randomised controlled trial.  Outpatient physiotherapy departments at two public hospitals and one district pain clinic.  Adults (n=48) with chronic musculoskeletal pain (daily pain >3 months), who self-identified as Mandaean, Assyrian or Vietnamese, were randomised to one of two physiotherapy treatment conditions.  participants underwent combined group and individualised treatment described as ‘culturally adapted physiotherapy’, while 24 underwent evidence-informed ‘usual physiotherapy care’. Both treatment arms consisted of up to 10 sessions over a 3-month period. Outcome measures Patient engagement was measured via participant attendance, adherence and satisfaction data. Secondary outcomes included clinical measures of pain severity, interference and suffering, physical function and negative emotional state.  96% of participants undergoing culturally adapted physiotherapy completed treatment, compared with 58% of the usual physiotherapy group. For the culturally adapted group attendance (87%±18%) and adherence (68%±32%) were higher relative to usual care (68%±32% and 55%±43%). Satisfaction was similar for the culturally adapted (82.7%±13.4%) and usual care (79.3±17.3) groups. For secondary outcomes, a significant between-group effect for pain-related suffering in favour of the culturally adapted group was observed with a medium effect size (partial η2 0.086, mean 3.56, 95% CI 0.11 to 7), while results for pain severity, interference, physical function and negative emotional state were similar.  Aligning treatment with the beliefs and values of culturally and linguistically diverse communities enhances patient engagement with physiotherapy. These results support the feasibility of a larger, multisite trial to determine if improved engagement with culturally adapted physiotherapy translates to improved clinical outcomes.

title: PRISM, a Novel Visual Metaphor Measuring Personally Salient Appraisals, Attitudes and Decision-Making: Qualitative Evidence Synthesis
abstract: PRISM (the Pictorial Representation of Illness and Self Measure) is a novel, simple visual instrument. Its utility was initially discovered serendipitously, but has been validated as a quantitative measure of suffering. Recently, new applications for different purposes, even in non-health settings, have encouraged further exploration of how PRISM works, and how it might be applied. This review will summarise the results to date from applications of PRISM and propose a generic conceptualisation of how PRISM works which is consistent with all these applications.  A systematic review, in the form of a qualitative evidence synthesis, was carried out of all available published data on PRISM.  Fifty-two publications were identified, with a total of 8254 participants. Facilitated by simple instructions, PRISM has been used with patient groups in a variety of settings and cultures. As a measure of suffering, PRISM has, with few exceptions, behaved as expected according to Eric Cassell’s seminal conceptualisation of suffering. PRISM has also been used to assess beliefs about or attitudes to stressful working conditions, interpersonal relations, alcohol consumption, and suicide, amongst others.  This review supports PRISM behaving as a visual metaphor of the relationship of objects (eg ‘my illness’) to a subject (eg ‘myself’) in a defined context (eg ‘my life at the moment’). As a visual metaphor, it is quick to complete and yields personally salient information. PRISM is likely to have wide applications in assessing beliefs, attitudes, and decision-making, because of its properties, and because it yields both quantitative and qualitative data. In medicine, it can serve as a generic patient-reported outcome measure. It can serve as a tool for representational guidance, can be applied to developing strategies visually, and is likely to have applications in coaching, psychological assessment and therapeutic interventions.

title: Graphic Representation of Illness: A Novel Method of Measuring Patients’ Perceptions of the Impact of Illness
abstract: Health outcome is multi-faceted, and for both research and clinical practice, greater knowledge of its facets is required. The Pictorial Representation of Illness and Self Measure (PRISM) was developed as a simple, rapid measure of the current impact of illness and symptoms on the individual.  The PRISM task was completed by 26 outpatients with rheumatoid arthritis participating in a larger study of psychosocial correlates of arthritis, which included assessment of disease variables, functional impairment, pain, depression and patients’ appraisals of their illness. In the PRISM task, the patient was asked to imagine that a small board represents his/her life and a fixed disk on the board represents his/her ‘self’. The task was to place another (Illness) disk on the board to represent the current importance of illness in the patients’ life. The main outcome measure was the distance between the Self and Illness disks.  Only 2 patients had difficulty understanding the task. PRISM distance did not correlate with any disease variables. It correlated inversely with pain, functional impairment and depression, and positively with coping resources. PRISM distance correlated with perceived control over illness and negatively with awareness of illness.  PRISM is an innovative measure, simple and well accepted by patients. It appears to measure what in German is termed leidensdruck, the burden of suffering due to illness. It offers a promising measure of an intangible but important health outcome, hitherto neglected, applicable to research interventions and clinical practice.

title: PRISM: Pictorial Representation of Illness and Self Measure. A brief nonverbal measure of illness impact and therapeutic aid in psychosomatic medicine.
abstract: The burden of illness is important for patients but complex and difficult to describe, let alone measure. A novel instrument is described that, according to preliminary data, measures what in German is termed Leidensdruck--the perceived burden of suffering due to illness. The measure--Pictorial Representation of Illness and Self Measure (PRISM)--takes less than 5 minutes to complete and is unusual in relying only minimally on language. The PRISM is being developed as a research tool and has been used effectively in routine clinical practice. To illustrate the latter application, three case vignettes are presented, demonstrating how the PRISM can enhance the patient's description and understanding of his/her illness and circumstances, facilitate patient-clinician communication, and help to monitor salient changes with treatment.

title: Validating PRISM (Pictorial Representation of Illness and Self Measure) as a measure of suffering in chronic non-cancer pain patients.
abstract: The Pictorial Representation of Illness and Self Measure (PRISM) is a recently developed tool designed to measure the burden of suffering due to illness in a variety of patient populations. The purpose of the current study was to validate PRISM as a measure of suffering in patients with chronic non-cancer pain. Patients (n = 138) were recruited from 2 hospital pain clinics, where they were participating in a 10-week, mindfulness-based chronic pain management course and during which they completed validated questionnaires to assess their outcomes. Convergent validity was assessed by correlating their PRISM scores with scores on the Short-Form 36v2 quality of life instrument, the Pain Catastrophizing Scale, and the 0 to 10 Numeric Pain Scale. Content validity and test-retest reliability were assessed, and a factor analysis performed to identify relationships among the PRISM domains. PRISM was found to have good reliability and was significantly correlated with many of the subdomains of the other questionnaires. Qualitative data (n = 26) revealed that PRISM was well understood and that there was consistency in interpreting the task. Our data suggest that the PRISM task measures constructs relating to quality of life, pain catastrophizing, and pain intensity and probably measures suffering in patients with chronic non-cancer pain, providing a novel and quick tool for clinicians.



This study demonstrates the reliability and validity of the PRISM task for measuring the burden of pain in a population of chronic pain sufferers. Clinicians in the field of chronic pain management may find PRISM useful for monitoring the impact of pain management strategies on pain perception and the psychosocial variables that influence suffering.

title: PRISM (pictorial representation of illness and self measure): a novel visual instrument to assess pain and suffering in orofacial pain patients.
abstract: To use PRISM (Pictorial Representation of Illness and Self Measure), a visual instrument that has recently been developed and validated to assess suffering in patients with chronic physical illness, in orofacial pain patients and test for associations of PRISM with established assessment tools for pain, affective symptoms, and sleep. Of particular interest was the utility of PRISM as a screening tool for severely suffering patients.



One hundred and two orofacial pain patients recruited from a specialized outpatient service completed a questionnaire-based survey, including established assessment tools: the Visual Analog Scale (VAS), Graded Chronic Pain Scale (GCPS), the Hospital Anxiety and Depression Scale (HADS), and the Insomnia Severity Index (ISI), as well as a paper and pencil version of PRISM.



Of the 102 patients who submitted the clinical questionnaire, 74 performed the PRISM-test (response rate: 72%). PRISM scores correlated strongly with all subscores of pain (measured by GCPS) and sleep (measured by ISI). Further, a trend was observed in the correlation with affective symptoms measured by the HADS. PRISM could readily detect patients with high, pain-related suffering.



These data add support to the hypothesis that the PRISM task in its paper and pencil version is measuring the burden of suffering. The clinical utility of this simple graphic tool therefore lies in its potential to alert clinicians to a high burden of suffering and thus it may help to identify orofacial pain patients who may benefit from more comprehensive assessment and treatment. Prospective studies are needed to clarify this claim.

title: Cross-cultural adaptation and validation for Portuguese (Brazilian) of the pictorial representation of illness and self measure instrument in orofacial pain patients.
abstract: To translate the Pictorial Representation of Illness and Self Measure (PRISM) instrument from German to Portuguese (Brazilian) and adapt it to the Brazilian cultural context, and then assess its reliability and validity in orofacial pain patients.



The PRISM was translated to Portuguese then back-translated to German. The translated PRISM was evaluated by a multidisciplinary committee and administered as a pre-test to 30 Portuguese-speaking orofacial pain patients. Psychometric properties were obtained after testing 116 orofacial pain patients. Validity was obtained through correlation analyses of scores obtained from PRISM and other psychometric tests, including the Numerical Pain Scale (NPS), Insomnia Severity Index (ISI), and Hospital Anxiety and Depression Scale (HAD).



The adapted instrument showed high levels of reliability, proven by means of the test-retest procedure, and calculation of the Intraclass Correlation Coefficient (ICC = 0.991). Significant correlations were found between PRISM and the other tests. Correlation with NPS was moderate (-0.42), whereas correlations with ISI (-0.24), HAD-anxiety (-0.25), and HAD-depression (-0.22) were weak.



The cross-cultural adaptation process of PRISM was successful and the adapted version offers reliable and valid psychometric properties in the Brazilian context.

title: Graphic representation of the burden of suffering in dizziness patients
abstract: BackgroundDizziness adversely affects an individual’s well-being. However, its impact is not only influenced by its physical manifestations, but also by its subjective importance to the patient. Appropriately assessing the subjective burden of dizziness is difficult. The Pictorial-Representation of Illness- and Self-Measure (PRISM), on which patients illustrate the distance between their ‘self’ and their illness, has been documented to indicate the perception of suffering in several different illnesses. Our study objectives were (1) to assess how useful the PRISM is in patients with dizziness; and (2) to determine which clinical, emotional and sociodemographic factors contribute to their burden of suffering. total of 177 outpatients with dizziness completed this cross-sectional study, in which the following measures were assessed of suffering rated using the PRISM tool; dizziness-related variables, like emotional distress (Hospital Anxiety and Depression-Scale, HADS); self-perceived severity of dizziness (Dizziness Handicap Inventory, DHI); and sociodemographic variables.ResultsRegression analyses identified the strongest association between PRISM-rated suffering and DHI (p < 0.001), explaining 34% of the variance in PRISM-rated suffering. The HADS score and having continuous dizziness versus transient attacks each explained roughly 2% of the variance in suffering. No significant associations with PRISM-rated suffering were found for sociodemographic variables or other dizziness characteristics.ConclusionsThe PRISM is applicable to patients suffering from dizziness, demonstrating a significant association with the severity of dizziness and reliably distinguishing between those with low and high intensities of dizziness. The PRISM also reflects the multi-factorial aspects of suffering. Due to its immediate, timesaving and economical use, the PRISM could enable clinicians to identify vulnerable patients at risk for chronic symptoms and distress. Whether the PRISM can detect improvements and worsening of symptoms during treatment warrants further research.

title: Predictors of Suffering in Advanced Cancer
abstract: Suffering is a complex experience. Identifying its predictors is useful to signal at-risk patients.  To identify suffering predictors in patients with advanced cancer in palliative care.  A total of 98 patients participated in the study. A semistructured interview examining suffering levels and physical, psychological, social, and spiritual aspects was used. Instruments included Pictorial Representation of Illness and Self Measure (PRISM), Edmonton Symptom Assessment System (ESAS), Detection of emotional distress (DED), and Structured Interview of Symptoms and Concern (SISC). Variance-based structural equation model was used for the data analysis.  All measures were valid and reliable. The structural model explained 64% of the variance. Suffering levels were directly determined by psychological and adjustment problems and indirectly determined by physical, psychological, and spiritual aspects and coping strategies.  Our study supports the proposed theoretical model and signals the important mediating effect of psychological and spiritual variables between physical symptoms and suffering.

title: Suffering assessment: a review of available instruments for use in palliative care.
abstract: The prevention and relief of suffering in palliative care are critical to the well-being and quality of life of patients and families facing life-threatening diseases. Many tools to assess different issues in health care are available, but few are specifically designed to evaluate suffering, which is essential for its prevention, early management, and treatment.



The purpose of this review was to identify and describe existing instruments developed to assess suffering in palliative care, as well as to comment on their psychometric properties.



A review of articles indexed in MEDLINE, PsycINFO, and SciELO up to June 2011 was conducted. All articles reporting the development, description, or psychometric properties of instruments that assess suffering were included. An assessment of their psychometric quality was performed following a structured checklist.



Ten instruments that assess suffering were identified. Their main features and psychometric properties are described in order to facilitate the selection of the appropriate one given each patient's context.



By taking into consideration all features of the assessment instruments under review, the evaluation of suffering can be made easier. A wide and ever expanding range of approaches is now available, which facilitates the selection of the suffering-assessment instrument that is best suited to the needs of the specific patient. One of the challenges ahead will be to further analyze the psychometric properties of some existing instruments.

title: Diagnosing Suffering: A Perspective
abstract: One must not always think so much about what one should do, but rather what one should be. Our works do not ennoble us, but we must ennoble our works. Meister Eckhart, Work and Being Physicians who care for the dying agree that the relief of suffering is a central issue. Too much pain is inadequately treated, and too much suffering is undiagnosed and unrelieved. Such circumstances may be more common now than a generation ago because current treatments keep people alive long enough to enter the chronic, terminal phase of their illness; the duration and severity of their suffering are thereby increased. Some who strongly oppose assisted suicide believe that if suffering were relieved, most of the demand for assistance with dying would disappear (1). If you do not make the diagnosis, you cannot relieve the suffering. Making a diagnosis of suffering, however, differs from the usual diagnostic process that internists are familiar with because suffering is an affliction of the person, not the body. That fact helps resolve some of the puzzles of suffering. We know, for example, that some patients suffer with pain and other symptoms whereas others do not suffer from symptoms of the same degree. We know that suffering seems related to the meaning of the symptomwhen, for example, terminal cancer is the cause, or death threatens, suffering is more common. In addition, fear of the future contributes to suffering, as when patients who formerly had cancer suffer at the thought of the recurrence of their condition. Suffering can start with anguish over the possibility that if the symptom continues, the patient will be overwhelmed or lose controlI won't be able to take it. Suffering as a Threat to the Integrity of Persons The aforementioned examples, and others that clinicians can call to mind, suggest that suffering involves at least some symptom or process (physical or otherwise) that poses a threat, the meaning of that threat, fear, and concerns about the future. Suffering has been defined as a specific state of distress that occurs when the intactness or integrity of the person is threatened or disrupted. It lasts until the threat is gone or integrity is restored (2, 3). Suffering is related to the severity of the affliction, but that severity is measured in the patient's terms and is expressed in the distress they are experiencing, their assessment of the seriousness or threat of their problem, and how impaired they feel themselves to be (4). The language that describes and defines the patient's suffering is different from the language of medicinethere is too often an actual disconnect between our case history and the patient's narrative (5). Herein lies one of the reasons for the inadequate relief of suffering. Physicians are trained primarily to find out what is wrong with the bodyour complex personal and technological methods are aimed at bodiesin terms of diseases or pathophysiology; they do not examine what is wrong with persons. It would seem, from looking at training programs and physicians' actions, that people, with all their ideas, conceptions and misconceptions, fears and fancies, and misleading behaviors, are too often seen as something a physician has to get out of the way in order to diagnose and treat diseases and their manifestations. When physicians attend to the body rather than to the person, they fail to diagnose suffering. The problem is made worse because what causes suffering in one person may not do so in another. Suffering is not only personalthat is, involving the personit is also individual. Physicians not only have to be aware of the personal characteristics of a patient to know that suffering is present or to relieve it; they must understand the nature of this particular person. Suffering can vary in its intensity and duration; the differences depend on the particular person. For example, the neurologic deficits of early multiple sclerosis may be a source of intense suffering for a cellist but only moderately distressing for a scholar. A 47-year-old single woman, in whom the sudden appearance of widespread metastatic breast cancer caused her to be hospitalized and near death, suffers. But it is not primarily the weakness, profound anorexia, and generalized edema, as distressing as they are, that are the source of her suffering, but the loss of control and inability to prevent the evaporation of her career whose brilliant promise had finally been realized a few months earlier. The facts and physical consequences of metastatic disease are something that physicians know but that the patient does not easily comprehend, even if she knows them intellectually. She struggles to understand and suffers most from what has happened to her personal life. It is the increasing awareness of the impact of the physical state on the person, not the physical impairments per se, that causes the suffering. Does this mean that suffering is psychological in the sense of affecting or pertaining only to the mental and emotional as opposed to the physical state of a person? No, because just as reading, riding a bicycle, or working as a physician may involve any aspect of a personphysical, emotional, and socialso too does suffering, although a psychological insult such as grief may be a precipitating cause. The Difficulty of Recognizing Suffering In the care of the suffering patient, attending to the person means more than caring about the patient or being compassionate. Often, as one hears physicians talk about dying patients' personal characteristics, details of life and work, and relationships with family, their care and compassion are evident, but suffering is not suspected unless the patient makes its presence clear. Lack of recognition and treatment of suffering does not come about only because of absence of compassion or concern, whatever our public may believe; it is also the result of physicians' poor diagnostic and therapeutic knowledge and skills about personsthat is, an inability to focus on the person rather than the disease, the pathophysiology, or the immediate physiologic crisis. This blindness to persons may seem strange, since we all know about persons; each of us is one, we live among them all the time, and we care about others and ourselves as persons. But familiarity is not enough; after all, we lived among bodies all the time (including our own), but we did not know about them as physicians until we were trained in how they function and how to examine them, gather evidence, and think about them as part of our work. Making a diagnosis of suffering means first of all maintaining a high index of suspicion in the presence of serious disease and obviously distressing symptoms. As a start, it means asking whether the patient is suffering and why. Even though patients often do not know that they are suffering, they must be questioned directly: Are you suffering? I know you have pain, but are there things that are even worse than just the pain? Are you frightened by all this? What exactly are you frightened of? What do you worry (are afraid) is going to happen to you? What is the worst thing about all this? Once asked, patients have to be given the time to answer. The questions are purposely somewhat vague; they tell patients that they have permission to talk about things that usually no one wanted to hear before, and they do not specify what answers are expected. In the beginning, physicians may find these to be very uncomfortable conversations because no one enjoys hearing about unrelieved pain, misery, and suffering. Physicians are also frequently concerned that they will be helpless in the face of the patients' answers. It is often surprising how little is actually required of the physicianasking the questions and attentively listening to the answers are usually helpful in themselvesand how little time the process takes. The gratification that commonly follows these interactions more than repays physicians for their discomfort, and with time they become easier. The subjective assessments one discovers by these questions may, however, be a problem for physicians. Medicine has tried throughout the past two centuries (most successfully in the last generation) to see diseases and the body as part of directly observable, objectively existing, and purely material states of affairs, in the way that biological science generally sees nature. Physicians seek as much objective evidence as possible for the physical aspects of disease. It isn't surprising, therefore, that in medicine a conflict has arisen between objective and subjective information. Objective knowledge is considered scientific and valuable, whereas subjective information is thought to be soft and second-rate. For the relief of suffering, that conflict is not only false but an impediment. The work of clinicians is made more difficult by the continuing worship of objective fact and discrediting of subjective information; these tendencies encourage treatment of disease as an object of science rather than treatment of persons who do (or do not) have a disease. For persons, once one gets past demographic characteristics, the evidence is mostly subjective. Singer and colleagues (6) suggest that five domains are of concern to dying persons: adequately relieving pain and symptoms, avoiding inappropriate prolongation of dying, achieving control, relieving others of the burden of their dying, and strengthening personal relationships. They quote other sources with similar concerns (7-9). From Evidence to Inference about Suffering The first problem in actually diagnosing suffering is that much of the information about a suffering patient is subjective and therefore devalued. Go back a step, however, and see how we deal with even objective findings. We look at a chest radiograph and see a big, white, fluffy, irregularly shaped shadow in the left upper lung fieldas objective as anything can be. Do we say big, white, fluffy, irregularly shaped shadow? No, we sa

title: Preliminary Validation of PRISM (Pictorial Representation of Illness and Self Measure) – A Brief Method to Assess Suffering
abstract: Alleviation of suffering is widely acknowledged as one of the main goals of medicine. However, no measure to assess this crucial aspect of illness has been developed to date.  To validate PRISM (Pictorial Representation of Illness and Self-Measure) as a simple quantitative method of assessing the perceived burden of suffering due to illness.  Validity and reliability studies to date have involved over 700 patients with a variety of chronic physical illnesses.  Reliability of PRISM is good (test-retest reliability r = 0.95; p ≤ 0.001, interrater reliability r = 0.79; p ≤ 0.001). Qualitative data indicate that the interpretation of the PRISM task is not only consistent among patients, but also consistent with that expected from existing literature on suffering. As expected, PRISM shows strong correlations with psychological variables (notably depression and coping resilience) and also correlates with SF-36 subscale scores. Prospective longitudinal data demonstrate that PRISM is sensitive to therapeutic change. It is very acceptable to patients and takes less than 5 min to administer.  In the absence of a ‘gold standard’ measure of suffering, our validation data must be interpreted with caution. However, the performance of PRISM is entirely consistent with what would be expected of a measure of suffering, based on current published work.

title: Pictorial Representation of Illness and Self Measure (PRISM): A novel visual instrument to measure quality of life in dermatological inpatients.
abstract: To validate the PRISM (Pictorial Representation of Illness and Self Measure) tool, a novel visual instrument, for the assessment of health-related quality of life in dermatological inpatients compared with the Dermatology Life Quality Index (DLQI) and the Skindex-29 questionnaires and to report qualitative information on PRISM.



In an open longitudinal study, PRISM and Skindex-29 and DLQI questionnaires were completed and HRQOL measurements compared.



Academic dermatological inpatient ward.



The study population comprised 227 sequential dermatological inpatients on admission.



Patients completed the PRISM tool and the Skindex-29 and DLQI questionnaires at admission and discharge.



PRISM Self-Illness Separation (SIS) score; Skindex-29 and DLQI scores; and qualitative PRISM information by Mayring inductive qualitative context analysis.



The PRISM scores correlated well with those from the Skindex-29 (rho = 0.426; P < .001) and DLQI (rho = 0.304; P < .001) questionnaires. Between PRISM and Skindex-29 scores, the highest correlations were for dermatitis (rho = 0.614) and leg ulcer (rho = 0.554), and between PRISM and DLQI scores, the highest correlations were for psoriasis (rho = 0.418) and tumor (rho = 0.399). The PRISM tool showed comparable or higher sensitivity than quality of life questionnaires to assess changes in the burden of suffering during hospitalization. Inductive qualitative context analysis revealed impairment of adjustment and self-image as major aspects. Patients overall expected symptomatic and functional improvement. In patients with psoriasis and leg ulcers, many expected no treatment benefit.



The PRISM tool proved to be convenient and reliable for health-related quality of life assessment, applicable for a wide range of skin diseases, and correlated with DLQI and Skindex-29 scores. With the PRISM tool, free-text answers allow for the assessment of individual information and potentially customized therapeutic approaches.

title: Measuring the experience and perception of suffering.
abstract: assess psychometric properties of scales developed to assess experience and perception of physical, psychological, and existential suffering in older individuals.



scales were administered to 3 populations of older persons and/or their family caregivers: individuals with Alzheimer's disease (AD) and their family caregivers (N = 105 dyads), married couples in whom 1 partner had osteoarthritis (N = 53 dyads), and African American and Hispanic caregivers of care recipients with AD (N = 121). Care recipients rated their own suffering, whereas caregivers provided ratings of perceived suffering of their respective care recipients. In addition, quality of life, health, and functional status data were collected from all respondents via structured in-person interviews.



three scales showed high levels of internal consistency, test-retest reliability, and convergent and discriminant validity. The scales were able to discriminate differences in suffering as a function of type of disease, demonstrated high intra-person correlations and moderately high inter-person correlations and exhibited predicted patterns of association between each type of suffering and indicators of quality of life, health status, and caregiver outcomes of depression and burden.



suffering is an important but understudied domain. This article provides valuable tools for assessing the experience and perception of suffering in humans.

title: PRISM (Pictorial Representation of Illness and Self Measure) - a novel visual method to assess the global burden of illness in patients with systemic lupus erythematosus
abstract: For patients with chronic illnesses the global burden of illness is a crucial health measure hitherto neglected in research studies and clinical practice. We tested the application and validity of PRISM (Pictorial Representation of Illness and Self-Measure), a novel visual method for assessing the burden of illness, in patients with systemic lupus erythematosus (SLE).  PRISM was applied in a cross sectional sample of 60 patients with SLE. Correlations were assessed between a quantitative measure derived from PRISM (Self-Illness Separation  SIS) and sociodemographic factors, measures of disease activity, damage, physical and psychological disability variables, as well as coping resources.  The PRISM task was understood by all but one patient, and was in every instance completed in less than 3 minutes. SIS correlated with SF-36 physical health, coping resources as assessed by Sense of Coherence (SOC), and age, but not with disease activity or damage. In multiple regression analyses, independent contributions to SIS were observed for SF-36 physical component scale (contributing 12% of the variance). SOC (10%) and age (14%).  PRISM is a new non-verbal measure to assess burden of illness. As in previous studies, PRISM was well accepted and understood by patients with SLE, quick to complete, and yielded meaningful information consistent with that in earlier research work.

title: Pictorial representation of illness and self measure (PRISM): an effective tool to assess the burden of psoriasis
abstract: Psoriasis has a negative impact on patient's' quality of life, which may reflect the physical and psychosocial impact of the disease. However, little is known about the perceived burden of disease. Pictorial Representation of Illness and Self Measure (PRISM), a pictorial tool, was developed to measure this global suffering. Capturing quality of life impairments in psoriasis is an integral part of assessing the overall disease severity and planning effective treatment strategies.

title: Assessing suffering in advanced cancer patients using Pictorial Representation of Illness and Self-Measure (PRISM), preliminary validation of the Spanish version in a Latin American population
abstract: PurposeThis study aims to adapt the Pictorial Representation of Illness and Self-Measure (PRISM), a practical, nonverbal method with strong psychometric properties, to Spanish and to explore its criterion validity in advanced cancer and palliative care (PC).MethodsOf the consecutive advanced cancer patients attending a palliative care consultation, 209 were invited to participate. To examine criterion validity, correlations were calculated between the PRISM, the Detection of Emotional Distress scale (DED), the Edmonton Symptom Assessment System (ESAS), the Structured Interview of Symptoms and Concerns (SISC), and the suffering visual analogue scale (VAS).ResultsNinety-eight patients fulfilled inclusion criteria (mean age, 60 years; SD, 14.25; 57 % female). The most frequent types of cancer were lung, breast, and colorectal. Average time since diagnosis was 30 months (2.5 years). PRISM significantly correlated with the Suffering VAS, the DED, and the SISC. It also showed significant correlations with psychosocial factors such as emotional distress, anxiety, loss of control, and perceived coping and spiritual distress items such as loss of dignity and hopelessness, but not with items examining physical symptoms.ConclusionsThe PRISM is a valid measure of suffering in advanced cancer patients. Its Spanish version fits adequately with current definitions and conceptualizations of suffering and may be used in PC settings. Further analysis of other psychometric properties in Spanish-speaking settings is recommended.

title: Suffering Quantified? Feasibility and Psychometric Characteristics of 2 Revised Versions of the Pictorial Representation of Illness and Self Measure (PRISM)
abstract: The Pictorial Representation of Illness and Self Measure (PRISM) assesses suffering. In this article, the authors explored the feasibility and psychometric qualities of 2 revised versions of the PRISM—PRISM-R1 and PRISM-R2—that they used in 3 studies of participants with different medical problems. The results showed significant differences between the patient groups in suffering as measured with the revised PRISMs. In addition, the revised PRISMs appeared to be sensitive to change in the predicted direction after an intervention. Last, the 2 measures of the revised PRISM seemed to indicate different aspects of suffering. These findings yield preliminary support for the feasibility and validity of the PRISM-R2.

title: Distribution of health literacy strengths and weaknesses across socio-demographic groups: a cross-sectional survey using the Health Literacy Questionnaire (HLQ)
abstract: BackgroundRecent advances in the measurement of health literacy allow description of a broad range of personal and social dimensions of the concept. Identifying differences in patterns of health literacy between population sub-groups will increase understanding of how health literacy contributes to health inequities and inform intervention development. The aim of this study was to use a multi-dimensional measurement tool to describe the health literacy of adults in urban and rural Victoria, Australia.MethodsData were collected from clients (n = 813) of 8 health and community care organisations, using the Health Literacy Questionnaire (HLQ). Demographic and health service data were also collected. Data were analysed using descriptive statistics. Effect sizes (ES) for standardised differences in means were used to describe the magnitude of difference between demographic sub-groups.ResultsMean age of respondents was 72.1 (range 19–99) years. Females comprised 63 % of the sample, 48 % had not completed secondary education, and 96 % reported at least one existing health condition. Small to large ES were seen for mean differences in HLQ scales between most demographic groups. Compared with participants who spoke English at home, those not speaking English at home had much lower scores for most HLQ scales including the scales ‘Understanding health information well enough to know what to do’ (ES −1.09 [95 % confidence interval (CI) -1.33 to −0.84]), ‘Ability to actively engage with healthcare providers’ (ES −1.00 [95 % CI −1.24, −0.75]), and ‘Navigating the healthcare system’ (ES −0.72 [95 % CI −0.97, −0.48]). Similar patterns and ES were seen for participants born overseas compared with those born in Australia. Smaller ES were seen for sex, age group, private health insurance status, number of chronic conditions, and living alone.ConclusionsThis study has revealed some large health literacy differences across nine domains of health literacy in adults using health services in Victoria. These findings provide insights into the relationship between health literacy and socioeconomic position in vulnerable groups and, given the focus of the HLQ, provide guidance for the development of equitable interventions.

title: The Intersections of Chronic Noncancer Pain: Culturally Diverse Perspectives on Disease Burden
abstract: This study highlights the burden of chronic non-cancer-related pain from the perspectives of three culturally and linguistically diverse communities, using an intersectionality analysis. Specifically, we identify how multiple social identities intersect to account for the unequal distribution of the burden of chronic pain.



Six focus groups of 41 culturally and linguistically diverse participants (Mandaean, Assyrian, and Vietnamese) living with chronic noncancer pain were conducted in South-West Sydney, Australia, between February and July 2015. Data were analyzed using inductive and intersectional methodology.



The interaction between a patient with chronic pain from a culturally and linguistically diverse background and the health system is influenced by four identified social identities that interact to create relative positions of disadvantage for the patient within the health system and with health care providers. The social identities identified were ethnoculture, social class, migration status, and gender.



Health care providers must consider how the intersectionality of social identities related to ethnoculture, social class, migration status, and gender can factor into the creation and maintenance of chronic pain disparities. A greater, more thoughtful incorporation of intersectionality in chronic pain research and clinical practice will ensure that pain management approaches are designed and applied in a way that reflects the social context of affected communities and individuals from those communities.

title: Guidelines for the process of cross-cultural adaptation of self-report measures.
abstract: With the increase in the number of multinational and multicultural research projects, the need to adapt health status measures for use in other than the source language has also grown rapidly. 1,4,27 Most questionnaires were developed in English-speaking countries, 11 but even within these countries, researchers must consider immigrant populations in studies of health, especially when their exclusion could lead to a systematic bias in studies of health care utilization or quality of life. 9,11 The cross-cultural adaptation of a health status selfadministered questionnaire for use in a new country, culture, and/or language necessitates use of a unique method, to reach equivalence between the original source and target versions of the questionnaire. It is now recognized that if measures are to be used across cultures, the items must not only be translated well linguistically, but also must be adapted culturally to maintain the content validity of the instrument at a conceptual level across different cultures. 6,11‐13,15,24 Attention to this level of detail allows increased confidence that the impact of a disease or its treatment is described in a similar manner in multinational trials or outcome evaluations. The term “cross-cultural adaptation” is used to encompass a process that looks at both language (translation) and cultural adaptation issues in the process of preparing a questionnaire for use in another setting. Cross-cultural adaptations should be considered for several different scenarios. In some cases, this is more obvious than in others. Guillemin et al 11 suggest five different examples of when attention should be paid to this adaptation by comparing the target (where it is going to be used) and source (where it was developed) language and culture. The first scenario is that it is to be used in the same language and culture in which it was developed. No adaptation is necessary. The last scenario is the opposite extreme, the application of a questionnaire in a different culture, language and country—moving the Short Form 36-item questionnaire from the United States (source) to Japan (target) 7 which would necessitate translation and cultural adaptation. The other scenarios are summarized in Table 1 and reflect situations when some translation and/or adaptation is needed. The guidelines described in this document are based on a review of cross-cultural adaptation in the medical, sociological, and psychological literature. This review led to the description of a thorough adaptation process designed to maximize the attainment of semantic, idiomatic, experiential, and conceptual equivalence between the source and target questionnaires. 13 . Further experience in cross-cultural adaptation of generic and diseasespecific instruments and alternative strategies driven by different research groups 18 have led to some refinements

title: Back-Translation for Cross-Cultural Research
abstract: Two aspects of translation were investigated: (1) factors that affect translation quality, and (2) how equivalence between source and target versions can be evaluated. The variables of language, content, and difficulty were studied through an analysis of variance design. Ninety-four bilinguals from the University of Guam, representing ten languages, translated or back-translated six essays incorporating three content areas and two levels of difficulty. The five criteria for equivalence were based on comparisons of meaning or predictions of similar responses to original or translated versions. The factors of content, difficulty, language and content-language interaction were significant, and the five equivalence criteria proved workable. Conclusions are that translation quality can be predicted, and that a functionally equivalent translation can be demonstrated when responses to the original and target versions are studied.

title: Multidimensional measurement of cancer pain: comparisons of US and Vietnamese patients.
abstract: This study reports the development of a version of the Brief Pain Inventory (BPI) in Vietnamese and compares responses of Vietnamese cancer patients in pain with patients in the US. Reports that the BPI is able to separately measure the severity of pain and the interference caused by pain are supported. Factor analysis indicates that US an Vietnamese cancer patients give similar responses to pain severity and pain interference items. Because Vietnamese patients receive few analgesics, we predicted they would report greater pain severity. A discriminant function was formed from pain ratings the BPI which separated Vietnamese patients from patients from two Wisconsin hospitals. Vietnamese patients reported higher pain severity but not higher pain interference.

title: Validation of the Brief Pain Inventory for chronic nonmalignant pain.
abstract: The Brief Pain Inventory (BPI; Cleeland and associates) has been used primarily to assess patients with cancer-related pain. Although it has been validated in many languages and is widely used, there has not yet been research published to validate its use for patients with chronic nonmalignant pain as the primary presenting problem. This study was designed to fill this gap by examining the psychometric properties of the BPI in 440 patients with chronic intractable pain referred to a chronic pain clinic at a metropolitan tertiary-care teaching hospital. Results indicated acceptable internal consistency (Cronbach alpha coefficients were.85 for the intensity items and.88 for the interference items). A factor analysis resulted in 2 distinct and independent factors, supporting the validity of the 2-factor structure of the BPI. Zero-order correlations indicated that the association with a measure of disability (the Roland-Morris Disability Questionnaire [RMDQ]) was significantly higher for BPI interference (r = 0.57) than for BPI intensity (r = 0.40, t = 5.71, P <.01) and that the correlation with BPI interference was not more than 0.80, supporting the conclusion that these scales assess related, but also distinct, dimensions. Finally, the finding that both BPI scales showed statistically significant improvement with treatment confirms the responsivity of BPI in detecting and reflecting improvement in pain over time.



This paper validated the psychometric properties of a pain Assessment instrument (The Brief Pain Inventory) originally developed to assess cancer pain and extended its use for the chronic nonmalignant pain population. This provides an important and widely used diagnostic tool for the clinician treating chronic pain.

title: Psychometric evaluation of the arabic brief pain inventory in a sample of Lebanese cancer patients.
abstract: Pain is a common complaint in oncology patients, and success in its treatment requires accurate assessment. Thus, assessment tools that are practical, culturally sensitive, and psychometrically sound are needed.



The purpose of this study was to evaluate the psychometric properties and cultural sensitivity of the Arabic Brief Pain Inventory (BPI) in a Lebanese sample of cancer patients. The BPI measures the location and severity of pain; pain relief from treatment; and the pain's interference with life.



The BPI was translated into Arabic. Its cultural sensitivity was evaluated by a panel of experts. This instrument and a visual analogue scale for pain were administered to a convenience sample of 75 adult oncology patients receiving pain treatment.



The experts' ratings indicated that the tool was culturally sensitive. The majority of the patient sample (88%) was married, male (78.7%), older than 46 years (56%), and with at least a secondary education (84%). The mean pain intensity rating was 5.3 ± 1.7, with interference ratings of 5.3 ± 2.0 to 7.0 ± 2.5. Most patients (78.4%) reported more than 50% pain relief with treatment. Cronbach alpha coefficients were 0.82 and 0.92 for the severity and interference items, respectively. Factor analysis yielded two factors, replicating the severity and interference dimensions. Correlations between the severity and interference items ranged between 0.25 and 0.57 (P < 0.05).



The findings support the validity, reliability, and cultural sensitivity of the Arabic BPI in Lebanese oncology patients. This tool can be used to assess pain and improve its management in this population.

title: What do the numbers mean? Normative data in chronic pain measures
abstract: &NA; Although self‐reported measures play a central role in the assessment of pain and its treatment, it has long been recognized that interpretation of these measures is severely limited by the absence of normative data. Despite that, relatively few of the measures used in pain clinics or research studies have normative data for reference. Using a pain centre sample (n = 6124), this paper describes the development of a normative dataset on a number of commonly used pain‐related measures. The measures cover many of the key dimensions in pain assessment, including pain severity/quality, disability (physical functioning), and mood (emotional functioning). Measures of different cognitive and coping constructs are also included. Mean scores are reported for each measure according to age group, gender, pain site, as well as percentiles for different scores for patients with chronic low back pain. The potential uses for datasets of this type include the assessment and evaluation of individual cases, as well as the interpretation of published clinical trials. It is also argued that future systematic reviews of pain treatments should include consideration of such patient characteristics as pain levels, disability and mood in the studies reviewed rather than pain site and chronicity alone.

title: A one-year follow-up study of chronic pain in community-dwelling older adults with and without neuropathic pain
abstract: BackgroundChronic, mostly musculoskeletal pain is common among older adults. Little is known about the prognosis of chronic pain and the neuropathic pain qualities in older adults. We studied a cohort of community-dwelling older adults, clinically assessed their pain states, classified their type of pain (nociceptive, neuropathic or combined) and followed them up for a year.MethodsAt baseline, a geriatrician clinically examined all study patients and classified their type of pain in collaboration with a pain specialist. Pain, quality of life and mental health were measured by questionnaires (BPI, GDS-15, BAI and SF-36) and reassessed after 1 year.ResultsDespite chronic pain, all patients from the baseline cohort continued to live independently at 1 year. A total of 92 of 106 (87%) patients returned the follow-up questionnaire. Nociceptive pain on its own was present in 48 patients, whereas 44 patients also had neuropathic pain. Most patients (96%) had several pain states at baseline, and 13 patients reported a new pain state at follow-up. On average, there were no significant changes in the pain intensity, pain interference, mood or quality of life in either group between baseline and follow-up. Changes in pain were observed at the individual level, and both intensity and interference of pain at the follow-up had a negative correlation with the baseline value.ConclusionsOn average, chronic pain was persistent in our patients, but they were able to live independently despite their pain. At the individual level, both relief and exacerbation of pain were observed, supporting the notion that pain is not inevitable and unremitting among older adults.

title: Evaluating the SF-36 Health Survey (Version 2) in Older Vietnamese Americans
abstract: The SF-36® Health Survey (Version 2; SF-36) was evaluated among older Vietnamese Americans to determine whether underlying dimensions of physical and mental health were similar to those of other groups in the United States.  Field testing of participants from senior centers.  The study provided support for the reliability and validity of the SF-36. Structural equation modeling provided confirmation of physical and mental health factors. However, the factor loadings for the SF-36 scales were more consistent with previous results from Asian countries than the typical pattern observed in the United States.  As the older populations in the United States become more diverse, it is important to have standardized health-related quality of life measures. However, the conceptualization of physical and mental health and associations among different scales may be different for Asian immigrants than for other groups. Thus, the interpretation of the SF-36 scores needs to account for cultural differences.

title: The SF-36 Among Cambodian and Vietnamese Refugees: An Examination of Psychometric Properties
abstract: Among traumatized Cambodian (N=90) and Vietnamese (N=94) refugees attending a psychiatric clinic, the study examined the validity and psychometric properties of the Short Form-36 Health Survey (SF-36), a measure of self-perceived mental and physical health. In both patient samples, all eight SF-36 scales displayed excellent internal consistency (item-scale correlations and Cronbach's α). But, similar to other studies of Asian samples, (a) the Vitality (VT) scale did not separate from the Mental Health (MH) and General Health (GH) scales, as evidenced by item-scale and interscale correlations, and (b) the VT scale loaded as strongly (Vietnamese sample) or more strongly (Cambodian sample) than the MH scale on the so-called Mental Factor in a two-factor solution of the eight scales (with the GH scale also loading heavily on the same factor).

title: Reliability and Validity of the Arabic Version of the SF-36 Health Survey Questionnaire in Population of Khat Chewers—Jazan Region-Kingdom of Saudi Arabia
abstract: The SF-36 questionnaire is considered to be one of the most important measures in health economics of health status and quality of life. However, this questionnaire has not yet been used in khat-related studies in the Kingdom of Saudi Arabia. We aim to assess the reliability and validity of the SF-36 questionnaire on khat chewers in the Jazan region of Saudi Arabia. A total of 450 khat chewers were selected to answer this questionnaire from March 2nd to April 30th, 2012. We first report descriptive and correlation analyses of the data. Then using a construct validity analysis, we uncover the underlying structure of the SF-36 questionnaire. Finally, Cronbach’s alpha and intraclass correlation coefficient analyses were performed to assess the internal consistency of the questionnaire. For the demographic variables, we found age to be negatively associated with SF-36 scales (p ≤ 0.05), whereas education was positively associated (p ≤ 0.05). Importantly, we observed that khat has a negative impact on the quality of life of its users; therefore, intervention measures are needed to solve this problem. The principal component factor analysis of the construct validity confirmed the presence of eight factors in the SF-36, with some of the subscale components remaining as independent factors. Finally, the internal consistency for this questionnaire was high (α 0.72–0.90) across the eight subscales. The above results suggest that the SF-36 questionnaire is a useful scale to measure the quality of life of khat consumers. This study has potential implications in shaping healthcare policy, particularly in evaluating the economic burden of khat consumption and calculating ‘years of life lost’ and ‘years lived with disability’.

title: Translation in Arabic, adaptation and validation of the SF-36 Health Survey for use in Tunisia.
abstract: To translate into Arabic and validate the SF-36 quality of life index in a Tunisian Arabic population.



No validated Arabic quality of life index is published.



Arabic translation of the SF-36 scale was obtained by the "forward/backward translation" method. Adaptations were made after a pilot study involving 22 subjects from general population. Inter-rater reliability was assessed by use of intraclass correlation coefficient (ICC) and Bland and Altman method. Construct validity was assessed by Spearman rank correlation coefficient (convergent and divergent validity), and factor analysis with Varimax rotation. Internal consistency was assessed by Cronbach alpha coefficient.



We note that 130 Tunisian subjects were included in the validation study. No items were excluded. Inter-rater reliability was excellent (ICC=0.98). Cronbach alpha coefficient was 0.94 conferring to translated index a good internal consistency. Expected divergent and convergent validity results suggested good construct validity. Two main factors were extracted by factor analysis and explained 62.3% of the cumulative variance: the first factor represented mental component, the second physical component. The Cronbach alpha coefficient was 0.88 and 0.91 respectively for factor 1 and factor 2.



We translated into Arabic language and adapted the SF-36 scale for use in Tunisian population. The Arabic version is reliable and valid. Although the scale was validated in a Tunisian population, we expect that it is suitable for other Arab populations, especially North Africans. Further studies are needed to confirm such a hypothesis.

title: The Utility of Somatic Items in the Assessment of Depression in Patients With Chronic Pain: A Comparison of the Zung Self-Rating Depression Scale and the Depression Anxiety Stress Scales in Chronic Pain and Clinical and Community Samples
abstract: To investigate the role of somatic items in the assessment of depression in chronic pain.  The Self-Rating Depression Scale was administered to 398 individuals with chronic pain, 313 psychology clinic patients with similar overall levels of depression, and a general population sample of 491. All three samples were also administered the Depression Anxiety Stress Scales.  Confirmatory factor analysis of pooled Self-Rating Depression Scale and Depression Anxiety Stress Scales items revealed that Self-Rating Depression Scale items denoting diurnal variation, decreased appetite, weight loss and constipation failed to contribute to depression in all 3 samples. Items denoting tachycardia and irritability also failed to discriminate between depression and a combined anxiety/stress factor in all 3 samples. The chronic pain sample endorsed somatic items, in particular psychomotor retardation, sleep disturbance, constipation, and fatigue, more strongly than the other samples relative to their endorsement of nonsomatic depression items.  It was concluded that depression measures that give emphasis to somatic symptoms provide poor measures of depression severity in any individuals and in patients with chronic pain may lead to an overestimation of the severity of depression. More recently developed instruments avoid these limitations and are also better able to discriminate depression from related states such as anxiety and tension/stress.

title: Psychometric Properties of an Arabic Version of the Depression Anxiety Stress Scales (DASS)
abstract: To translate and evaluate the psychometric properties of an Arabic-language version of the Depression Anxiety Stress Scales (DASS).  The items were translated, back translated, refined, and tested in an Australian immigrant sample (N = 220).  Confirmatory factor analysis showed that the Arabic DASS discriminates between depression, anxiety, and stress but to a lesser degree than the English DASS. The factor loadings for all 42 items were comparable to those of the English DASS, indicating that the items had been appropriately translated and adapted. Analysis of exploratory items suggested by Arabic-speaking mental health professionals failed to reveal any new items that were both psychometrically adequate and theoretically coherent. Analysis of a bilingual sample (N = 24) indicated that the English norms was appropriate for the Arabic DASS.  The results support the universality of depression, anxiety, and stress across cultures and provide initial support for the psychometric properties of the Arabic DASS.

title: Quantifying test-retest reliability using the intraclass correlation coefficient and the SEM.
abstract: Reliability, the consistency of a test or measurement, is frequently quantified in the movement sciences literature. A common metric is the intraclass correlation coefficient (ICC). In addition, the SEM, which can be calculated from the ICC, is also frequently reported in reliability studies. However, there are several versions of the ICC, and confusion exists in the movement sciences regarding which ICC to use. Further, the utility of the SEM is not fully appreciated. In this review, the basics of classic reliability theory are addressed in the context of choosing and interpreting an ICC. The primary distinction between ICC equations is argued to be one concerning the inclusion (equations 2,1 and 2,k) or exclusion (equations 3,1 and 3,k) of systematic error in the denominator of the ICC equation. Inferential tests of mean differences, which are performed in the process of deriving the necessary variance components for the calculation of ICC values, are useful to determine if systematic error is present. If so, the measurement schedule should be modified (removing trials where learning and/or fatigue effects are present) to remove systematic error, and ICC equations that only consider random error may be safely used. The use of ICC values is discussed in the context of estimating the effects of measurement error on sample size, statistical power, and correlation attenuation. Finally, calculation and application of the SEM are discussed. It is shown how the SEM and its variants can be used to construct confidence intervals for individual scores and to determine the minimal difference needed to be exhibited for one to be confident that a true change in performance of an individual has occurred.

title: Statistics corner: A guide to appropriate use of correlation coefficient in medical research.
abstract: Correlation is a statistical method used to assess a possible linear association between two continuous variables. It is simple both to calculate and to interpret. However, misuse of correlation is so common among researchers that some statisticians have wished that the method had never been devised at all. The aim of this article is to provide a guide to appropriate use of correlation in medical research and to highlight some misuse. Examples of the applications of the correlation coefficient have been provided using data from statistical simulations as well as real data. Rule of thumb for interpreting size of a correlation coefficient has been provided.

title: Statistical Power Analysis for the Behavioral Sciences
abstract: Prefaces. The Concepts of Power Analysis. The t-Test for Means. The Significance of a Product Moment rs (subscript s). Differences Between Correlation Coefficients. The Test That a Proportion is .50 and the Sign Test. Differences Between Proportions. Chi-Square Tests for Goodness of Fit and Contingency Tables. The Analysis of Variance and Covariance. Multiple Regression and Correlation Analysis. Set Correlation and Multivariate Methods. Some Issues in Power Analysis. Computational Procedures.

title: Chronic musculoskeletal pain, prevalence rates, and sociodemographic associations in a Swedish population study.
abstract: To estimate the prevalence of chronic regional and widespread musculoskeletal pain in a sample of the general adult population and study the association to age, sex, socioeconomic class, immigration, and housing area.



A cross sectional survey with a postal questionnaire to 3928 inhabitants on the west coast of Sweden.



The age and sex adjusted prevalence of chronic regional pain (CRP) was 23.9% and chronic widespread pain (CWP) 11.4% among 2425 subjects who responded to the complete questionnaire. Odds ratio (OR) for CWP showed a systematic increasing gradient with age and was highest in the age group 59-74 yrs (OR 6.36, 95% CI 3.85-10.50) vs age group 20-34 yrs. CWP was also associated with female sex (OR 1.91, 95% CI 1.41-2.61), being an immigrant (OR 1.83, 95% CI 1.22-2.77), living in a socially compromised housing area (OR 3.05, 95% CI 1.48-6.27), and being an assistant nonmanual lower level employee (OR 1.92, 95% CI 1.09-3.38) or manual worker (OR 2.72, 95% CI 1.65-4.49) vs being an intermediate/higher nonmanual employee. OR for CRP showed a systematic increasing gradient with age and was highest in the age group 59-74 yrs (OR 2.22, 95% CI 1.62-3.05) vs age group 20-34 yrs. CRP was also associated with being a manual worker (OR 1.63, 95% CI 1.19-2.23) vs being an intermediate/higher nonmanual employee.



Chronic musculoskeletal pain is common in the general population. Sociodemographic variables were overall more frequently and strongly associated with CWP than with CRP, which indicates different pathophysiology in the development or preservation of pain in the 2 groups.

title: Handbook of pain assessment
abstract: Turk, Melzack, The Measurement of Pain and the Assessment of People Experiencing Pain. Part 1: Measurement of Pain. Jensen, Karoly, Self-Report Scales and Procedures for Assessing Pain in Adults. Melzack, Katz, The McGill Pain Questionnaire: Appraisal and Current Status. Price, Riley, Wade, Psychoohysical Approaches to Measurement of the Dimensions and Stages of Pain. Flor, Psychophysiological Assessment of the Patient with Chronic Pain. McGrath, Gillespie, Pain Assessment in Children and Adolescents. Gagliese, Assessment of Pain in Elderly People. Hadjistravropoulos, van Baeyer, Craig, Pain Assessment in Persons with Limited Ability to Communicate. Part 2: Assessment of the Behavioral Expression of Pain. Craig,Prkachin, Grunau, The Facial Expression of Pain. Keefe, Williams, Smith, Assessment of Pain Behaviors. Part 3: Medical and Physical Evaluation of Patients with Pain. Polatin, Mayer, Quantification of Function in Chronic Low Back Pain. Battie, May, Physical and Occupational Therapy Assessment Approaches. Hogan, Diagnostic Injection. J.P. Robinson, Disability Evaluation in Painful Conditions.  Psychological Evaluation of Patients with  Robinson, Riley,  Matching Treatment to Assessment of Patients with Chronic Pain. Part 5: Specific Pain States and Syndromes. Haythornthwaite, Fauerbach, Assessment of Acute Pain, Pain Releif, and Pain Satisfaction. Waddell, Turk, Clinical Assessment of Low Back Pain. Andrasik, Assessment of Patients with Headaches. Assessment of Patients with Headaches. S.F. Dworkin, Ohrbach, Assessment of Orofacial Pain. Gerwin, The Diagnosis of Myofacial Pain Syndromes.  Dworkin, Nagasako, Galer, Assessment of Neuropathic Pain. Bruehl, Steger, Harden, Complex Regional Pain Syndrome. Wesselman, Chronic Pelvic Pain. Anderson, Syrjala, Cleeland, Assessment of Chronic Pain. S.F Dworkin, Sherman, Relying on Objective and Subjective Measures of Chronic Pain: Guidelines for Use and Interpretation. Okifuji, Turk, Assessment of Treatment Outcomes in  A Survival Guide.  Dworkin, Nagasako, Hetzel, Farrar, Assessment of Pain and Pain-Realated Quality of Life in Clinical Trials. Jones, The Future of Imaging in Assessment of Chronic Chronic Musculoskeletal Pain.  Turk, Melzack, Trends and Future Directions in Human Pain Assessment.

title: Understanding cultural influences on back pain and back pain research.
abstract: Low back pain is highly prevalent and places a considerable burden on individuals, their families and communities. This back pain burden is unequally distributed around the world and within populations. Clinicians and researchers addressing back pain should be aware of the cultural, social and political context of back pain patients and how this context can influence pain perception, disability and health care use. Culture, which influences the beliefs and behaviour of individuals within a social group, could be considered an important contributor to the unequal distribution of back pain. However, there is paucity of high-quality research exploring the influence of culture on the experience and management of back pain. Further development and testing of specific tools, assessment methods and communication strategies are needed to improve our understanding of how cultural practices, values and identifications affect those dealing with back pain.

title: Are multidisciplinary interventions multicultural? A topical review of the pain literature as it relates to culturally diverse patient groups
abstract: Worldwide, societies are becoming increasingly culturally diverse. International migration continues to rise, influenced by political, economic, and socioenvironmental factors and is now a structural feature of almost all contemporary nations. Cultural diversity was recognised by the United Nations Educational Scientific and Cultural Organisation (UNESCO) as a key global concern at the start of the 21st century. The changing demographics and economics of a multicultural world, and the health disparities for some culturally diverse communities, provide significant challenges for health care systems internationally. Cross-cultural investigations demonstrate that definitions, descriptions, and perceptions of pain and pain control are culturally specific. Experimental pain investigations demonstrate significant differences in pain tolerances and thresholds according to ethnicity. The way in which pain is experienced is powerfully influenced by culturally based attitudes, beliefs, and values. Beliefs and values mediate emotional responses to pain disorders and pain coping strategies, such as stoicism, spiritual coping, hypervigilance, and catastrophising. Unravelling and understanding the multiple and fluid dimensions that construct the pain experience is fundamental to reducing suffering and ensuring equitable pain management.

title: Barriers to Chronic Pain Measurement: A Qualitative Study of Patient Perspectives.
abstract: Preliminary evidence suggests that chronic pain patients complete pain intensity measures using idiosyncratic methods. Our objective was to understand these methods and how they might impact the psychometric properties of the instruments.



A qualitative focus-group based study.



An academic center in New York City.



Outpatients (n = 36) with chronic low back pain, or neuropathic pain due to diabetes or HIV.



Participants were divided into three focus groups based on their pain condition, and asked to discuss pain intensity measures (visual analog and numeric rating scales for average pain over 24 hours; Brief Pain Inventory; and McGill Pain Questionnaire). Audio-recordings were transcribed and analyzed using an inductive thematic method.



We discovered four main themes, and five sub-themes: 1) doubt that pain can be accurately measured (subthemes: pain measurement is influenced by things other than pain, the numbers used to rate pain do not have an absolute meaning, and preference for pain intensity ratings "in the middle" of the scale); 2) confusion regarding the definition of pain; 3) what experiences to use as referents (subthemes: appropriate comparator experiences and the interpretation of the anchors of the scale); and 4) difficulty averaging pain.



The themes discovered suggest that patients include sensations and experiences other than pain intensity in their ratings, experience the rating of pain as a comparative task, and do not use the scale in a linear manner. These themes are relevant to understanding the validity and scale properties of commonly used pain intensity measures.

title: [Inpatient rehabilitation in inpatients with chronic obstructive lung diseases (COPD): effect on physical capacity for work, psychological wellbeing and quality of life].
abstract: Success of inpatient rehabilitation for patients with chronic obstructive pulmonary disease (COPD) was assessed in a prospective study of 39 patients (mean age = 71 years). Six months after hospital stay (mean duration 22.4 days), physical endurance as assessed by the 6-minute walk distance remained unchanged. Subjective health measures improved (SF36 21 vs 29%; p < 0.05), MRC-dyspnoea was reduced (2.61 vs 2.19; p < 0.05) and measures of global quality of life also improved (56.1 vs 67.5; p < 0.05). Meanwhile, anxiety symptoms were reduced (7.7 vs 6.0; p < 0.05); no changes in depression scores were observed (6.8 vs 6.2; p = 0.271). A novel visual method to assess the burden of suffering, PRISM (Pictorial Representation of Illness and Self Measure), was applied for the first time in COPD patients. PRISM scores improved significantly (6.3 vs 12.2; p < 0.001). In conclusion, inpatient pulmonary rehabilitation improved subjective physical health measures and reduced anxiety levels.

title: Suffering: the contributions of persistent pain
abstract: Pain is a perceived threat or damage to one's biological integrity. Suffering is the perception of serious threat or damage to the self, and it emerges when a discrepancy develops between what one expected of one's self and what one does or is. Some patients who experience sustained unrelieved pain suffer because pain changes who they are. At a physiological level, chronic pain promotes an extended and destructive stress response characterised by neuroendocrine dysregulation, fatigue, dysphoria, myalgia, and impaired mental and physical performance. This constellation of discomforts and functional limitations can foster negative thinking and create a vicious cycle of stress and disability. The idea that one's pain is uncontrollable in itself leads to stress. Patients suffer when this cycle renders them incapable of sustaining productive work, a normal family life, and supportive social interactions. Although patients suffer for many reasons, the physician can contribute substantially to the prevention or relief of suffering by controlling pain. Suffering is a nebulous concept for most physicians, and its relation to pain is unclear. This review offers a medically useful concept of suffering that distinguishes it from pain, accounts for the contributory relation of pain to suffering by describing pain as a stressor, and explores the implications of these ideas for the care of patients.

title: The pain--suffering association, a review.
abstract: This review wished to determine the reported prevalence of suffering in various patient diagnostic groups and examine the evidence for the association of pain and suffering.



Twenty-four studies fulfilled inclusion-exclusion criteria. They were divided into the following groups: advanced cancer/terminal illness/hospice patients (AC/TI/H) (7 studies); hastened death/assisted suicide/euthanasia patients (HD/AS/E) (14 studies); noncancer (NC) patients (3 studies). No chronic nonmalignant pain (CNMP) suffering studies fulfilled inclusion-exclusion criteria of this review. The reported prevalence of suffering for each study was abstracted and the overall percentage of sufferers in each grouping calculated. For those studies that provided a statistical relationship between pain and suffering information was abstracted for whether these studies supported/did not support the association of pain and suffering. A vote counting method was utilized to determine the overall percentage of studies supporting/not supporting this association. The consistency of this data for supporting this association was then rated by Agency for Health Care Research and Quality guidelines.



The prevalence of suffering in each grouping was as follows: AC/IT/H 45.7%; HD/AS/E 81.9%; NC 19.2%; and all groupings combined 59.9%. AC/TI/H and all groupings combined received an A rating (consistent evidence multiple studies for a statistical relationship between suffering and pain). HD/AS/E received a C (evidence which is inconsistent). For NC there were not enough studies for a consistency rating.



The above results indicate a consistent association between suffering and pain in some patient groups. Studies addressing suffering are needed in CNPM patients.

title: Pain Management Programmes for Non-English-Speaking Black and Minority Ethnic Groups With Long-Term or Chronic Pain.
abstract: Increasing ethnic diversity in the UK means that there is a growing need for National Health Service care to be delivered to non-English-speaking patients. The aims of the present systematic review were to: (1) better understand the outcomes of chronic pain management programmes (PMPs) for ethnic minority and non-English-speaking patients and (2) explore the perspectives on and experiences of chronic pain for these groups. A systematic review identified 26 papers meeting the inclusion criteria; no papers reported on the outcomes of PMPs delivered in the UK. Of the papers obtained, four reported on PMPs conducted outside the UK; eight reported on ethnic differences in patients seeking support from pain management services in America; and the remaining papers included literature reviews, an experimental pain study, a collaborative enquiry, and a survey of patient and clinician ratings of pain. The findings indicate a lack of research into UK-based pain management for ethnic minorities and non-English-speaking patients. The literature suggests that effective PMPs must be tailored to meet cultural experiences of pain and beliefs about pain management. There is a need for further research to explore these cultural beliefs in non-English-speaking groups in the UK. Culturally sensitive evaluations of interpreted PMPs with long-term follow-up are needed to assess the effectiveness of current provision.

title: The Illness Narratives: Suffering, Healing, and the Human Condition: [Excerpt].
abstract: Based on twenty years of clinical experience studying and treating chronic illness, a Harvard psychiatrist and anthropologist argues that diagnosing illness is an art tragically neglected by modern medical training, and presents a compelling case for bridging the gap between patient and doctor.

title: Patient-provider interactions in the management of chronic pain: current findings within the context of shared medical decision making.
abstract: This article reviews the literature on patient-provider interactions among patients with chronic pain conditions with an emphasis on shared medical decision making.



Key findings suggest that: 1) patients with chronic pain and health care providers are likely to have opposing attitudes and goals, with patients seeking "to be understood as individuals" and struggling to have their pain concerns legitimized while their health care providers may place a greater focus on diagnosis and treatment than quality of life concerns; and 2) female patients may face additional challenges when communicating their pain concerns with providers. Increased emphasis on communication training and efforts to promote a shared decision making process are proposed as possible mechanisms to improve patient-provider interactions.



Treatment of chronic pain is often complex and may be further complicated when patients and health care providers have differing goals and attitudes concerning treatment. Difficulties in engaging in collaborative treatment decision making may result. Efforts to enhance patient-provider communication as well as to systematically examine nonspecific treatment factors are likely to promote effective management of chronic pain.

title: Why study narrative?
abstract: This is the first in a series of five articles on narrative based medicine

> One day when Pooh Bear had nothing else to do,he thought he would do something, so he went round to Piglet's house to see what Piglet was doing. It was snowing as hestumped over the white forest track, and he expected to find Piglet warming his toes in front of the fire, but to his surprise he saw that the door was open, and the more he looked inside the more Piglet wasn't 

This excerpt from the opening chapter of a well known children's story illustrates a number of features of narrative as a linguistic form. Firstly, it has a finite and longitudinal time sequence—>that is, it has a beginning, a series of unfolding events, and (we anticipate) an ending. Secondly, it presupposes both a narrator and a listener whose different viewpoints affect how the story is told. Thirdly, the narrative is concerned with individuals; rather than simply reporting what they do or what is done to them it concerns how those individuals feel and how people feel about them. Both Pooh Bear, trudging hopefully through the snow, and Piglet, mysteriously absent from his usual place beside the fire, are already characters in the story rather than merely objects in the tale.

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The narrative also provides information that does not pertain simply or directly to the unfolding events. The same sequence of events told by another person to another audience might be presented differently without being any less “true.” This is an important point. In contrast with a list of measurements or a description of the outcome of an experiment, there is no self evident definition of what is relevant or what is irrelevant in a particular narrative. The choice of what to tell …

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title: Why we need narratives of healing and qualitative pain research.
abstract: Every practitioner of pain medicine knows the complexities of treating chronic pain. Quantitative research helps provide answers to biomedical questions, and we have good validated psychometric measures for quantitating psychosocial dimensions, but these fall far short of illuminating the full dimensions of the pain experience. The complex psychosocial contributions for understanding pain's pathology and the therapeutic effects of various treatments cannot be underestimated. These elements of human pain are subjective and “qualitative.” Yet the field of qualitative research is nascent, challenging to conduct and controversial in its interpretation. Ever mindful of the challenges, Zheng and colleagues, within this issue, present us with “Chaos to Hope: A Narrative of Healing,” a fascinating account of the journeys experienced by people in chronic non-cancer pain and, in particular, the effect, for good or ill, of taking opioids to relieve that pain . It is a valiant effort.

The pain narratives are insightful and probably generalizable. They are also troubling because they suggest to us what we may be doing wrong. The authors describe the human effects of real-world pain that go beyond a pain intensity or …

title: Language, culture and emotions: exploring ethnic minority patients' emotional expressions in primary healthcare consultations.
abstract: This study explores ethnic minority patients' expression of emotional cues and concerns in primary healthcare, and examines relationships with patient, provider and consultation attributes.



191 video-recorded consultations were analyzed using the VR-CoDES. Patients were interviewed before the consultation. Generalized Estimating Equations models (GEE) were used to test for associations.



Psychosocial versus bio-medically oriented encounters contained significantly more cues (p≤0.05). Patients with poor versus good language proficiency expressed significantly less cues (p≤0.001). No significant correlations were found with patients' cultural values, patients' or physicians' gender or the presence of an interpreter. Female patients express more concerns (p≤0.05), female physicians have a higher number of concerns expressed by patients (p≤0.02).



This study shows that independent of physician and diagnosis, patients' language proficiency has a more important impact on the number of cues expressed by the patient than cultural difference.



Medical schools and Continuing Medical Education should focus on training programs for recognizing and handling linguistic barriers between physicians and patients. Patient education programs should encourage patients who experience language barriers to open up to physicians. In situations where language is a barrier, physicians and patients should be encouraged to use interpreters to enhance the expression of emotions.