The illness perception questionnaire: A new method for assessing the cognitive representation of illness

Abstract

The Illness Perception Questionnaire (IPQ) is a new method for assessing cognitive representations of illness. The IPQ is a theoretically derived measure comprising five scales that provides information about the five components that have been found to underlie the cognitive representation of illness. The five scales assess identity - the symptoms the patient associates with the illness, cause - personal ideas about aetiology, time-line - the perceived duration of the illness, consequences - expected effects and outcome and cure control - how one controls or recovers from the illness. The IPQ has a specific number of core items but allows the user to add items for particular patient groups or health threats. Data is presented supporting the reliability and validity of the IPQ scales in different chronic illness populations.     

Does the Illness Behavior Questionnaire measure abnormal illness behavior?

Abnormal illness behavior (AIB) has been proposed as a construct measuring the inappropriate or maladaptive modes of responding to one's state of health, and the Illness Behavior Questionnaire (BQ; Pilowsky, 1975) was designed to measure this construct. Previous studies using small samples have failed to agree on the factor structure of this questionnaire. The present paper examines the factor structure of the Illness Behavior Questionnaire and critically evaluates the interpretation of its dimensions as well as the construct of AIB. A factor analysis of responses from 1,061 health care and nonhealth care seeking subjects yielded six interpretable factors which substantially replicated Pilowsky's previous results. Six scales were calculated and correlated with several personality measures. The results indicated that the Illness Behavior Questionnaire is saturated with neuroticism, a dimension known to be related to excessive medical complaints. But excessive medical complaints cannot be equated with hypochondriasis or AIB in the absence of objective medical information. In the absence of evidence for the discriminant validity of the IBQ, its use as a diagnostic device is unwarranted. Treating elevated IBQ scores as indicators of abnormal illness behavior without corroborating medical information may be more misleading than accepting patients' symptom reports at face value.     

Illness perceptions and self-care behaviours in the first years of living with type 2 diabetes; does the presence of complications matter?

Objective: To assess illness perceptions, self-care behaviours and their relationship in recently diagnosed type 2 diabetes mellitus (T2DM) patients with and without diabetes-related complications.

Design: Cross-sectional survey among 192 recently diagnosed T2DM patients of whom 23% reported the presence of diabetes-related complications. Illness perceptions and self-care were assessed by the Revised Illness Perception Questionnaire (IPQ-R) and the revised Summary of Diabetes Self-Care Activities (SDSCA) measure.

Results: Generally, participating patients perceived T2DM as a chronic, but relatively controllable condition with minor consequences. In the presence of complications, however, T2DM was perceived as more unpredictable with more (serious) consequences and less controllable by self-care or medical treatment. Furthermore, engagement in exercise and foot care was reported more often by patients with complications. Self-care was related to certain illness perception dimensions, and interactions between perceptions and complications were found.

Conclusion: T2DM patients in the first years of their illness are often recommended to make lifestyle changes in the absence of noticeable diabetes-related symptoms or complaints. As many T2DM patients do not seem to perceive their condition to be serious and postpone lifestyle changes until diabetes-related complications appear, a major challenge for professionals is to convince asymptomatic patients of the importance of self-care.     

Perceived Stress and Comorbid Illness Predict Depressive Symptomatology in People with Coeliac Disease

A high prevalence of depression is found in people with coeliac disease (CD). People with CD who are depressed are less likely to manage their illness effectively, which may lead to complications. Identification of variables associated with depression in people with CD may facilitate early detection and intervention. Participants were 749 members (125 males, 622 females) of the Queensland Coeliac Society (aged 18–88 years), recruited via a mailout. Participants completed the Modified Zung Self‐Rating Depression Scale, the Perceived Stress Scale, and the Perceived Consequences Subscale (from the Revised Illness Perception Questionnaire). Stress (p = .001) and comorbid medical illness (p = .01) were significantly associated with depression in CD. The current study made an original contribution to the body of literature by identifying stress and comorbid medical illness as predictors of depression in CD.     

Illness perception in people with chronic obstructive pulmonary disease

Illness perception (IP) concerns how patients evaluate living with a disease. To get a broader understanding of IP in patients with chronic obstructive pulmonary disease (COPD), we investigated whether breathlessness is an important precursor of IP and whether IP in its turn is related to mental health, physical health and global quality of life (QOL). One hundred and fifty‐four patients with COPD participated in a cross‐sectional survey. Participants underwent pulmonary function testing, provided socio‐demographic and clinical information, and completed the following standardized instruments: Brief Illness Perception Questionnaire, Respiratory Quality of Life Questionnaire, Short‐Form 12 Health Survey and the Quality of Life Scale. Multiple regression analyses were performed. A high IP score indicates that a patient believes that his/her illness represents a threat. Participants with a high score on the IP dimensions consequences, identity, concern and emotional representation, experienced more breathlessness. High scores on the IP dimensions consequences, identity and concern were associated with impaired physical health and high scores on the IP dimensions consequences, identity and emotional representation were associated with impaired mental health. Impaired global QOL was associated with high scores on the IP dimensions consequences, identity, concern, coherence and emotional representation. The strength of the associations between breathlessness and physical/mental health and global QOL decreased when certain dimensions of IP were included as predictors, indicating that IP to some extent acts as a mediating factor. These findings may have practical implications of patient counselling by helping COPD patients to cope with their disease by restructuring their personal models of illness.     

Living with the unexplained: coping,distress, and depression among women with chronic fatigue syndrome and/or fibromyalgia compared to an autoimmune disorder

Chronic fatigue syndrome (CFS) and fibromyalgia are disabling conditions without objective diagnostic tests, clear-cut treatments, or established etiologies. Those with the disorders are viewed suspiciously, and claims of malingering are common, thus promoting further distress. It was hypothesized in the current study that levels of unsupportive social interactions and the coping styles used among those with CFS/fibromyalgia would be associated with perceived distress and depressive symptoms. Women with CFS/fibromyalgia (n = 39), in fact, reported higher depression scores, greater perceived distress and more frequent unsupportive relationships than healthy women (n = 55), whereas those with a chronic, but medically accepted illness comprising an autoimmune disorder (lupus erythematosus, multiple sclerosis, rheumatoid arthritis; n = 28), displayed intermediate scores. High problem-focused coping was associated with low levels of depression and perceived distress in those with an autoimmune condition. In contrast, although CFS/fibromyalgia was also accompanied by higher depression scores and higher perceived distress, this occurred irrespective of problem-focused coping. It is suggested that because the veracity of ambiguous illnesses is often questioned, this might represent a potent stressor in women with such illnesses, and even coping methods typically thought to be useful in other conditions, are not associated with diminished distress among those with CFS/fibromyalgia.     

Illness representations in patients with multimorbid long-term conditions: Qualitative study

Most research on illness representations explores how patients view single conditions, but many patients report more than one long-term condition (known as multimorbidity). It is not known how multimorbidity impacts on patient illness representations. This exploratory qualitative study examined patients’ representations of multimorbid long-term conditions and sought to assess how models of illness representation might need modification in the presence of multimorbidity. We explored two major issues: (1) the impact of multimorbidity on patient representations of their individual conditions and (2) the representation of multimorbidity itself. Twenty eight adults with at least two long-term conditions (mean of 4) were interviewed. The presence of multimorbidity impacted on patient illness representations in relation to the dimensions of identity, perceived cause, coherence and consequences. Representations of multimorbidity itself concerned representations of the burden of medication and perceived priorities among conditions and synergies and antagonisms between conditions and their management. The results have implications for the measurement of multimorbidity (through scales such as the Illness Perception Questionnaire) and the use of illness representations in the design and delivery of interventions to improve health behaviour and outcomes of patients with multiple long-term conditions.     

Illness representations predict adherence in adolescents and young adults with type 1 diabetes

Objective: Most adolescents and young adults (AYAs) with type 1 diabetes struggle with diabetes self-management and exhibit suboptimal glycemic control. This study examined two models of association between illness representations, a modifiable predictor of suboptimal outcomes, and adherence and glycemic control in AYAs with type 1 diabetes.

Design and main outcome measures: Ninety-nine AYAs (ages 15–20?years) completed measures of illness representations and adherence at two visits. Blood glucose monitoring frequency and haemoglobin A1c were obtained via chart review. Relationships were examined using structural equation modelling.

Results: Illness representations accounted for a significant proportion of the variance in blood glucose monitoring frequency (ΔR^2?=?.23, p?<?.01) and adherence to emergency precautions at Time 1 (ΔR^2?=?.07, p?=?.03). Illness representations also accounted for significant variance in blood glucose monitoring frequency (ΔR^2?=?.08, p?=?.01), adherence to recommendations for insulin and food (ΔR²?=?.08, p?=?.02) and exercise (ΔR^2?=?.10, p?<?.01), and adherence to emergency precautions (ΔR^2?=?.16, p?<?.01) at Time 2.

Conclusion: Illness representations are salient predictors of adherence in this population. Interventions targeting adherence promotion and glycemic control in AYAs with type 1 diabetes may be enhanced by efforts to modify illness representations.     

Measuring illness perceptions in the family context: psychometric properties of the IPQ-R adapted for adolescent–caregiver dyads

Objectives: Given the lack of validated measures assessing illness perceptions in families, the aim of our study was the development and psychometric testing of an adapted version of the Illness Perceptions Questionnaire-Revised (IPQ-R) allowing for Common Sense Model-based dyadic assessment of adolescents’ and caregivers’ perceptions of a chronic illness in adolescence.

Methods: Using a cross-sectional survey design, factor structure, reliability and validity of the adapted measure You-IPQ-R were tested in a sample of adolescents with asthma (N?=?155) and their primary caregivers (N?=?132). Analysis included a dyadic methodology (dyadic confirmatory factor analyses) and examination of the suitability of the measure for different age groups.

Results: Both the adolescent and the caregiver versions of the You-IPQ-R revealed good overall validity and reliability. For all Common Sense Model dimensions except for timeline cyclical in the caregiver version, unidimensional scales aligning with the original IPQ-R structure could be confirmed. Age-specific analyses revealed good to excellent measurement properties in adolescents aged 14 years or older, but considerably poorer indices in younger adolescents.

Conclusion: The dyadically validated You-IPQ-R will enable researchers and clinicians to compare illness perceptions in adolescent–caregiver dyads and to assess the effects of family illness perceptions’ congruence upon medical, psychosocial and behavioural outcomes.     

Coping among children and adolescents with chronic illness

The present study was aimed to investigate age and gender effects on coping with everyday stressors among children and adolescents with chronic illness and healthy controls. Patients (8–13 years of age) with asthma (n=47), atopic dermatitis (n=52), and cancer (n=57) were compared to healthy controls (n=158) matched by age, gender, and grade. Self-report data on coping with academic and interpersonal stressors were collected. The primary results indicated that coping with everyday stressors was improved in children and adolescents with chronic illness compared to healthy controls. Thus, patients reported less passive avoidance on cross-situational coping and tended to show more situation-specific coping with social and school-related stressors than healthy controls. Additionally, among the clinical groups, patients with atopic dermatitis and cancer scored higher on positive self-instructions than patients with asthma. Conclusively, the results suggest that coping with a chronic illness may lead to more effective coping with everyday stressors. Implications for evaluating coping styles in patients with chronic illness are discussed.     

Illness representations,coping and psychological adjustment to Parkinson's disease

The present study reports an application of the common sense model (CSM) of illness representations to the prediction of psychological distress in people with Parkinson's disease (PD). The study sought to (i) examine cross-sectional and prospective associations between illness representations, coping and psychological distress, and (ii) test the hypothesis that coping would mediate any relationships between illness representations and psychological distress. Patients with PD (n = 58) completed the Illness Perception Questionnaire-Revised, the Medical Coping Modes Questionnaire and the Hospital Anxiety and Depression Scale. Patients (n = 57) were followed-up at 6 months. Illness representations explained large amounts of variance in time 1 anxiety (R ² = 0.42) and depression (R ² = 0.44) as well as additional variance in time 2 anxiety (ΔR ² = 0.12) and depression (ΔR ² = 0.09) after controlling for baseline scores. In addition, avoidance mediated the effect of emotional representations on time 1 anxiety, and acceptance-resignation mediated the effects of both consequences and emotional representations on time 1 depression. The present study therefore provides partial support for the mediational model outlined in the CSM, as significant mediation effects were found only in the cross-sectional analyses.     

Association between quality of life of adolescents with type 1 diabetes and parents’ illness perception as evaluated by adolescents

Children and adolescents account for half of all cases of type 1 diabetes, which is one of the most common pediatric chronic diseases. The disease’s effects and the treatment/disease-management protocols patients must follow can lead to a marked deterioration in quality of life, especially for adolescents. Patients’ illness perceptions have been shown to impact their quality of life, but do other people’s illness perceptions also have an effect? The present study addressed this question by investigating possible links between the quality of life of adolescent patients with type 1 diabetes and illness perceptions, measured in terms of the adolescents’ self-perceptions, parents’ self-perceptions, and the adolescents’ evaluations of their parents’ perceptions. We asked 41 adolescents (M = 13.9 years; SD = 1.9) who had been undergoing treatment for type 1 diabetes for at least a year (M = 6.6 years; SD = 3.7) to complete the Diabetes Quality of Life for Youth Questionnaire-Short Form (DQOLY-SF) and the Illness Perception Questionnaire-Revised (IPQ-R). They completed the IPQ-R twice, once to state their own opinions (self-report) and once to give their evaluations of their parents’ perceptions. At the same time, but in a different room, their parents (N = 47) completed the IPQ-R (self-report). Quality of life was predicted by gender (p < .05) and by the parents’ emotional representations (p < .01) and perceptions of consequences (p < .01) as evaluated by the adolescents. This new approach provides new insights into the impact of parents’ perceptions on the quality of life of adolescents with type 1 diabetes.     

Diabetes distress,illness perceptions and glycaemic control in adults with type 2 diabetes

The emotional distress associated with adjusting to and living with diabetes has been termed diabetes distress. Diabetes distress is associated with glycaemic control but interventions to reduce diabetes distress have failed to consistently improve diabetes control. Various illness perceptions have previously been linked with both diabetes distress and glycaemic control but interrelationships between these features have not been previously investigated. We hypothesised that illness perceptions mediate the relationship between diabetes distress and glycaemia. Participants with type 2 diabetes attending diabetes outpatient clinics (n = 84) provided demographic and clinical information and completed the Diabetes Distress Scale-17 and the Brief Illness Perceptions Questionnaire. Using regression analysis we demonstrated that the illness perceptions of personal control, regimen-related distress, socioeconomic status and insulin use were significant contributors in the final model predicting HbA_1c. Higher levels of personal control were associated with better glycaemic control. Conversely, regimen-related distress was associated with hyperglycaemia. Mediation analyses showed that the relationship between regimen-related distress and HbA_1c was mediated by personal control. Our work suggests that psychological interventions designed to reduce diabetes distress may be more efficacious in improving glycaemic control if they address an individual’s perception of personal control.     

Is there an association between severity of illness and psychiatric symptoms in patients with chronic renal failure?

Chronic renal failure (CRF) is a frequent condition in elderly subjects, and it is associated with psychiatric comorbidity, especially depressive symptoms. Purpose of the present research was to compare patients with different severity of chronic kidney disease (CKD) in terms of psychiatric symptoms. One hundred CKD subjects were randomly selected among those attending the Department of Nephrology, University of Milan. The patients were evaluated through the following rating scales: Mini-Mental State Examination (MMSE), Beck Depression Inventory (BDI), Symptom Checklist (SCL-90), Kidney Disease Quality of Life- Short Form (KDQOL-SF) and Cumulative Illness Rating Scale (CIRS). A multivariable linear regression analysis was performed considering eGFR as continuous-dependent variable and rating scale scores as independent variables. A worse eGFR significantly correlated with the score about the effects of kidney disease on daily life (r = 0.25, p = 0.01) and the burden of kidney disease (r = 0.18, p = 0.05). Statistical significance of kidney disease on daily life persisted also in the final multivariate model (t = 2.04, p = 0.04). Severity of renal dysfunction seems to influence few psychiatric outcomes, particularly those related to quality of life and daily functioning. This result might depend on the over-worrying derived from the necessity to start a renal replacement therapy in the near future.     

Multiple illness perceptions in older adults: Effects on physical functioning and medication adherence

Objective: Previous research on illness perceptions has focused on single illnesses, but most adults over 65 suffer from multiple illnesses (multimorbidity). This study tests three competing operationalisations of multiple illness perceptions in predicting physical functioning and adherence: (1) main effects and interactions model; (2) peak model with effects of the most prominent illness perception; and (3) combined model with averaged illness perceptions over multiple illnesses.

Design: Longitudinal study in N?=?215 individuals (65–86?years) with multimorbidity at two measurement points over six months. Participants filled in two Brief Illness Perception Questionnaires (B-IPQ) on their two most severe illnesses.

Main outcome measures: Physical functioning, medication adherence.

Results: Factor analyses suggest that the B-IPQ contains three dimensions; consequences, control and timeline. Multiple regression models fit the data best for (1) and (3). Timeline (β?=??.18) and control (β?=?.21) predict adherence in (1); consequences (β?=?.16) and control (β?=?.20) in (3). Physical functioning was significantly predicted by interacting control beliefs in (1; β?=?.13), by peak consequences in (2; β?=??.14) and by consequences (β?=??.15) in (3).

Conclusions: Individuals with multimorbidity hold both distinct and combined perceptions about their illnesses. To understand individual responses to multimorbidity, perceptions about all illnesses and multimorbidity as entity should be examined.     

Impact of psychiatric illness upon asthma patients’ health care utilization and illness control. Are all psychiatric comorbidities created equal?

The impact of psychiatric illnesses upon asthma patients' functioning is not well understood. This study examined the impact of psychiatric comorbidity upon illness management in asthma patients using empirically-derived psychiatric comorbidity groups. Participants were a clinic sample of Greek-speaking asthma patients (N = 212) assessed using the Patient Health Questionnaire (PHQ) Somatoform, Depression, Panic Disorder (PD), Other Anxiety Disorder, Eating Disorder (ED) and Alcohol sub-scales. The associations between sub-scales were examined using multiway frequency analysis. The following groups were derived: Somatoform disorder and/or Any Depressive disorder (n = 63), Somatoform disorder and/or Other Anxiety disorder (n = 51), Somatoform disorder and/or Any ED (n = 60), and Any Anxiety group including PD and/or Other Anxiety disorder (n = 24). Across all groups, psychiatric illness was associated with significantly worse asthma control (p < .01). Participants in Any Anxiety group, OR = 4.61, 95% CI [1.90, 11.15], Somatoform and/or Any Depressive disorder, OR = 2.06, 95% CI [1.04, 4.09] and Somatoform and/or Other Anxiety disorder, OR = 2.75, 95% CI [1.35, 5.60] were at higher risk for asthma-related Emergency Room (ER) visits compared to controls. However only Somatoform and/or Any Depressive disorder, OR = 3.67, 95% CI [1.60, 8.72], Somatoform and/or Other Anxiety disorder, OR = 5.50, 95% CI [2.34, 12.74], and Somatoform and/or Any ED, OR = 4.98, 95% CI [2.14, 11.60] group membership were risk factors for asthma-related hospitalizations. Results suggest that while comorbid psychiatric disorders generally negatively impact asthma illness management, different psychiatric comorbidities appear to have disparate effects upon illness management outcomes.     

Cultural conceptions of a bereavement-related illness in a South African indigenous community

This study explored cultural conceptions of a bereavement-related illness among elderly (aged 34–85yrs) Northern Sotho-speaking people in Limpopo province. The participants (n = 14, females = 50%, mean age = 59 years, SD: 13.7 years) were purposively selected and interviewed using in-depth interviews. Data were analysed using Hycner’s adapted phenomenological method. Three themes emerged from the analysis: debilitating and life-threatening symptoms of the illness; aetiology explained by ritual taboo violations; and management of the illness through ritual cleansing. The cleansing process incorporates the administration of traditional herbs. The findings suggest bereavement-related illness in an African cultural community to be explained by their cultural concept of distress understandings.     

Anxiety and Asthma Symptoms in Urban Adolescents with Asthma: The Mediating Role of Illness Perceptions

Twenty to 40% of adolescents with asthma experience significant symptoms of anxiety. This study examined the mediational role of illness perceptions in the relationship between anxiety and asthma symptoms in adolescents. One hundred fifty-one urban adolescents (ages 11–18) with asthma completed measures of illness perceptions, and anxiety and asthma symptoms. Using the Baron and Kenny approach and Sobel tests, we examined whether illness perceptions mediated the anxiety-asthma symptom relationship. Three illness perceptions significantly mediated the relationship between anxiety and asthma symptoms, z = 1.97–2.13, p < .05; adjusted R ² = 0.42–0.51, p < .05. Greater anxiety symptoms were associated with perceptions that asthma negatively impacted one’s life and emotions and was difficult to control. These negative illness perceptions were, in turn, related to greater asthma symptoms. Illness perceptions helped explain the anxiety-asthma symptoms link in adolescents. Results suggest that targeting illness perceptions in adolescents with asthma and anxiety may help reduce asthma symptoms.     

Chronic Fatigue Syndrome Severity and Depression: The Role of Secondary Beliefs

Chronic fatigue syndrome (CFS) is a poorly understood illness that is characterized by profound and prolonged exhaustion and has no clear pathological marker. This study investigated the role of illness severity and secondary beliefs in depression among a CFS cohort, using the A–B–C framework of Rational Emotive Behavioral Therapy. Empirical research has consistently found that CFS patients tend to hold more negative cognitions about their illness, which could be associated with greater severity and emotional deficits. Specifically, secondary beliefs were explored as a mediating factor; as evidence suggests that secondary beliefs can result in dysfunctional emotions and/or behaviors, such as depression. Furthermore, it is estimated that up to 80% of CFS patients concurrently have depression. There were 156 participants with CFS who completed a questionnaire pack, which included the revised version of the Illness Perception Questionnaire, the Secondary Beliefs Scale (SBS), and the Cardiac Depression Scale. Hierarchical regression analysis revealed that secondary beliefs mediated the relationship between illness severity and depression. Specifically, the approval and comfort subscales of the SBS were significantly associated with depression. The current findings indicated that secondary beliefs could be an important focus in treatment of depression in chronic illness. As the mediating role of secondary beliefs is a new research finding, it is advised that further exploratory research is required.     

Dissimilarity in mother and adolescent illness representations of type 1 diabetes and negative emotional adjustment

The study explored how two measures of mother–adolescent dissimilarity in illness representations relate to negative emotional adjustment in mothers and adolescents. Eighty-four adolescents with type 1 diabetes (age 11.5–17.5) and their mothers completed the Revised Illness Perceptions Questionnaire and measures of negative emotional adjustment. Adolescents viewed diabetes as less chronic, containing fewer negative emotional representations, and that mother had less control over the illness than did mothers. Mother–adolescent mean differences in representations were not associated with negative adjustment for adolescents; mean differences in coherence were related to negative adjustment for mothers, when controlling the individual's own representations. A measure of dissimilarity based on the sum of squared differences between mother and adolescent was associated with negative adolescent adjustment when controlling adolescent's own representations, but no relations were found for mothers. Dyadic approaches to coping with chronic illness will benefit by understanding how dissimilarity in illness representations between patient and caregiver relate to adjustment.