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.     

Changes over time in head and neck cancer patients’ and caregivers’ illness perceptions and relationships with quality of life

Objective: This study investigated changes in illness perceptions from diagnosis to six months later in patients with head and neck cancer (HNC) and their caregivers. The study also examined whether discrepancy in patient and caregiver perceptions at diagnosis predicted patient health-related quality of life (HRQL) at six months.

Design: Forty-two patient–caregiver dyads completed the Brief Illness Perception Questionnaire (Brief IPQ) at diagnosis and again six months later. Patients also completed a HRQL questionnaire at both time points. Analyses were performed using the Actor–Partner Interdependence Model.

Main Outcome Measure: Total patient HRQL assessed by the Functional Assessment of Cancer Therapy (FACT-H&N).

Results: Perceptions of emotional impact and illness concern reduced over time in patients and caregivers. Perceptions of treatment control and identity increased in caregivers only. After controlling for the effects of baseline HRQL, and the individual contribution of patient and caregiver illness perceptions, greater discrepancy in perceptions of timeline, personal control, and illness identity among dyads at diagnosis predicted lower patient HRQL at six-month follow-up.

Conclusion: Patients’ and their caregivers’ perceptions of HNC are dynamic over time. Greater discrepancy between patients’ and caregivers’ illness perceptions at diagnosis predict poorer subsequent patient HRQL.     

Illness perceptions or recurrence risk perceptions: What comes first? A longitudinal cross-lagged examination among cardiac patients

Objectives: Previous research suggested that illness perceptions provide the basis for illness risk perceptions through an inductive reasoning process. This study aimed to assess the direction of relationships between illness and recurrence risk perceptions over time, among cardiac patients.

Design: A longitudinal study was conducted among 138 patients undergoing coronary angioplasty. Self-report questionnaires measured perceived recurrence risk and illness perceptions one day and one month after catheterisation.

Results: Cross-lagged Panel Model Analyses revealed that higher perceptions of timeline, consequences and emotional representations of illness at hospitalisation were associated with higher recurrence risk perceptions one month later. Perceived personal control was the only illness perception with bi-directional associations: higher perceived personal control at hospitalisation was associated with higher recurrence risk perceptions one month later; and higher recurrence risk perceptions at hospitalisation was associated with lower personal control one month later.

Conclusions: The findings suggest that the associations between recurrence risk and illness perceptions can only partly be explained by inductive reasoning. Halo effects and defensive processes are suggested as complementary explanations for the observed associations between risk and illness perceptions.     

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.     

‘It was all intertwined’: Illness representations and self-management in patients with cancer and anxiety/depression

Objective: Cancer and anxiety/depression frequently co-occur, leading to poorer outcomes for these illnesses. However, the majority of existing research investigates how participants view single illnesses alone. This study aimed to explore the content of individuals’ multimorbid representations and how these relate to their coping behaviours and self-management strategies for cancer and anxiety/depression.

Design: A semi-structured qualitative research design with theoretical thematic analysis.

Main Outcome Measures: Multimorbid illness representations, coping behaviours, and self-management strategies.

Results: In interviews with 21 participants multimorbid representations varied, three participants viewed cancer and anxiety/depression as unrelated, five participants were uncertain about the relationship between cancer and anxiety/depression, and the majority of participants perceived cancer and anxiety/depression as related. This third group of participants often described relationships as causal, with representations having both positive and negative influences on coping behaviours and self-management strategies. Representations were shown to change over the course of the cancer experience, with fear of cancer recurrence and the influence of participants’ most challenging illness also discussed.

Conclusions: People hold multimorbid illness representations that can influence self-management. An awareness of these representations by researchers, health professionals, and patients is important for the creation of future interventions that aim to improve and maintain patient wellbeing.     

Psychological predictors for health-related quality of life and disability in persons with chronic obstructive pulmonary disease (COPD)

Objective: Individuals with chronic obstructive pulmonary disease (COPD) exhibit low physical and mental health-related quality of life (HRQL) and high susceptibility to disability. We investigated the influence of psychological factors on HRQL and disability in COPD individuals recruited from the general population. In line with Leventhal’s common sense model, we expected psychological factors to be associated with HRQL and disability even after controlling for medical status.

Methods: Individuals with COPD (n = 502; 59.7 years old; GOLD grades were I: 3%, II: 17%, III: 34%, IV: 46%) were assessed through an online survey administered via COPD patient organisations in Germany. Individuals filled in the Short Form Health Survey (SF-12), COPD Assessment Test, Patient Health Questionnaire (modules: GAD-2, PHQ-15, PHQ-9), Brief Illness Perception Questionnaire, a questionnaire that assesses causal illness attributions, and the internal illness-related locus of control scale of the ‘KKG questionnaire for the assessment of control beliefs about illness and health’. Multiple linear regressions were calculated.

Results: The investigated factors explained high variances (disability = 56%, physical HRQL = 28%, mental HRQL = 63%, p ≤ .001). Better mental health, more optimistic illness perceptions, attribution to psychological causes, and stronger internal locus of control were associated with lower disability and better HRQL. Comorbid somatic symptoms contributed to high disability and low quality of life.

Conclusion: Psychological factors, such as illness perception, attribution and internal locus of control, were associated with disability and HRQL. These factors should be considered when designing treatments for individuals with COPD, and adequate interventions should be provided to enhance illness understanding and self-management skills.     

Measuring illness representations in breast cancer survivors (BCS) prescribed tamoxifen: Modification and validation of the Revised Illness Perceptions Questionnaire (IPQ-BCS)

Objective: The Revised Illness Perceptions Questionnaire (IPQ-R), widely used to assess illness perceptions, may fail to measure unique characteristics of different illnesses. This study modified and validated the IPQ-R for breast cancer survivors to provide detailed understanding of the specific illness perceptions held by these patients.

Design: Initial modifications were made following qualitative interviews and were revised in a think-aloud study. The modified scale was tested in 753 breast cancer survivors prescribed tamoxifen. Modifications included adding a tamoxifen consequences scale and adapting the timeline scales to measure beliefs around risk of recurrence and cure. A confirmatory factor analysis was conducted on the modified questionnaire and an exploratory factor analysis on the causal beliefs scale. Test–retest reliability, internal consistency and construct validity were also examined.

Results: The proposed eight-factor structure showed acceptable model fit, with high loadings and good reliability for all subscales. Correlations between subscales were consistent with theory and previous research.

Conclusions: The IPQ-BCS is valid and reliable, and provides unique understanding of specific perceptions held by this population, including beliefs surrounding risk of recurrence and consequences of ongoing hormonal treatment. Identifying these perceptions will aid development of interventions targeting depression, fear of recurrence and medication non-adherence.     

The relationship between dietary restraint and deficits in reasoning about causes of obesity

Abstract

Objective: Increased levels of dietary restraint are associated with deficits on many cognitive tasks. Less is known about how individual differences in restraint influences complex cognition such as reasoning which is the focus of this research.

Design: Two experimental studies are reported. In study 1, participants (n?=?158) completed a causal conditional reasoning task with statements about weight-related and general causal relationships. Study 2 replicated and extended study 1. Participants (n?=?108) completed a causal conditional reasoning task focusing on behavioural causes of weight change or general statements.

Main outcome measure: Causal conditional reasoning task performance.

Results: In study 1, levels of dietary restraint were negatively associated with reasoning abilities for weight-related statements only. Study 2 replicated the negative association between dietary restraint and reasoning finding the effect in both weight-related, and general, causal judgements.

Conclusion: The novel findings show that individual differences in dietary restraint have a wider relationship with cognition than previously demonstrated. Results tentatively support theoretical explanations of a reduction in cognitive capacity, rather than differences in belief, explaining reasoning deficits. These findings open an interesting avenue for research and might have implications for effective decision making about personal health behaviours, such as food choice.     

Brain drawings following traumatic brain injury (TBI) and links to illness perceptions and health outcomes – Findings from a population-based study

Objective: Individuals’ illness perceptions predict health behaviours and influence functional outcomes. This study examined associations between a novel assessment of illness perceptions, in the form of adult’s brain drawings after traumatic brain injury (TBI) and questionnaire measures of illness perceptions, quality of life and post-concussive symptoms.

Design: Population-based, prospective longitudinal study examining 245 adults with predominantly mild TBI with high risk of complications.

Main outcome measures: Participants were asked to draw pictures of what they thought their brain looked like before injury and at baseline and one month post-injury. Drawing characteristics (height, width and percentage damage at one month) were examined in relation to each outcome of interest at six months.

Results: Greater damage at one month was associated with more negative illness perceptions (rs = .23), poorer mental health (rs = ?.21), and more total post-concussive symptoms (rs = .27 to r = .35) at six months. The extent of damage depicted reduced over time (p < .001). No associations were found between the amount of damage drawn and injury severity, nor the height or width of drawings and injury severity or illness perceptions.

Conclusion: Drawings post-TBI offer a simple, cost- and time-effective way to begin discussions and improve understanding of peoples’ illness perceptions.     

The relation of illness perceptions to stress,depression, and fatigue in patients with chronic lymphocytic leukaemia

Objective: Chronic lymphocytic leukaemia (CLL) is the most prevalent adult leukaemia and is incurable. The course and treatment of CLL is unique and characterised by repeated cycles of treatment, stable disease and relapse. Utilising a Self-Regulatory Model framework, we examined the relationship between patients’ illness perceptions and cancer-specific stress, depressive symptoms and fatigue. Our aim was to test illness perceptions as predictors of these outcomes when variance due to disease and treatment variables was controlled.

Design: Data were collected on 147 patients with relapsed/refractory CLL as they entered a phase II clinical trial of an investigational medication at a university affiliated, National Cancer Institute designated comprehensive cancer center.

Main outcome measures: Cancer-specific stress, depressive symptoms and fatigue interference.

Result:. Hierarchical multiple regression was used. Consequences and emotional representation were related to all outcomes (ps?p?p?Conclusion: Illness perceptions are related to cancer-specific stress, depressive symptoms and fatigue interference in relapsed/refractory CLL. Interventions targeted at restructuring maladaptive illness perceptions may have clinical benefit in this population.     

Adaptation to an autoimmune disorder: Does mental flexibility impact illness-related self-regulation?

Objective: To examine whether mental flexibility moderates the relationship between illness representations of control and coping behaviour in individuals suffering from rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE).

Design: Recently, diagnosed RA (N = 80) and SLE (N = 75) patients completed questionnaires about illness representations of personal and treatment control and four coping behaviours: instrumental coping, adherence to medical advice, palliative coping and wishful thinking. Mental flexibility was assessed with the Trail Making Test Part B (TMT-B), while visuomotor processing speed, as a confounder, was assessed with the Trail Making Test Part A (TMT-A). Moderated mediation models were tested within a bootstrapped multiple regression framework.

Results: TMT-A scores had no statistically significant moderation effects on the relation between representations and coping behaviour. Conversely, in those participants with SLE, TMT-B scores moderated the relation of personal control to wishful thinking and palliative coping, as well as the relation of treatment control to both wishful thinking and palliative coping. All significant effects were restricted to the SLE group.

Conclusion: Interactions between neurocognitive factors and the process of illness adaptation may emerge early during the course of SLE. The present findings highlight the role of cognitive functioning as an integral part of the illness-related self-regulation mechanism.     

Acceptance,well-being and goals in adolescents with chronic illness: a daily process analysis

Objective: The main aim of this study was to investigate the relationship between acceptance and well-being in adolescents with chronic illness from a daily process perspective. Furthermore, we explored the role of daily experienced interference and facilitation of life goals by treatment goals as mediating mechanisms.

Methods: Thirty-eight adolescents with cystic fibrosis (CF) or diabetes completed questionnaires assessing acceptance, negative life events and goal-related self-efficacy. Furthermore, an online diary assessing daily mood, daily experienced interference and facilitation of life goals by treatment goals was completed during three consecutive weeks.

Results: Acceptance of illness was positively related to daily well-being, but unrelated to daily goal interference and facilitation. Furthermore, daily goal interference and facilitation were unrelated to same-day and next-day well-being.

Conclusion: This study suggests that acceptance of illness plays an important role in the daily mood of adolescents with CF and diabetes. This relationship, however, was not mediated by daily experienced interference and facilitation of life goals by treatment goals. Further research is needed to determine whether interventions promoting acceptance are beneficial for adolescents with CF and diabetes.     

A pilot study on the motivational effects of an internet-delivered physical activity behaviour change programme in Nova Scotian cancer survivors

Objective: To examine the effects of an internet-delivered, distance-based physical activity (PA) behaviour change programme on motivation to perform PA in cancer survivors.

Design: Breast, prostate and colorectal cancer survivors (N = 95) were randomized to either an online Theory of Planned Behaviour (TPB)-based PA behaviour change programme (UCAN) or usual care.

Main Outcome Measures: Motivational variables from the TPB including intention, planning, attitude, subjective norm, perceived behavioural control and underlying beliefs.

Results: UCAN had significant negative effects on self-efficacy (?.7; 95% CI = ?1.2 to ?.1; d = ?.53, p = .019), affective attitude (?.4; 95% CI = ?.8 to ?.0; d = ?.45, p = .044), instrumental attitude (?.5; 95% CI = ?.9 to ?.1; d = ?.43, p = .026) and confidence to perform PA in bad weather (?.8; 95% CI = ?1.6 to ?.1; d = ?.49, p = .030), despite health issues (?.7; 95% CI = ?1.3 to ?.1; d = ?.48, p = .031), despite pain/soreness (?.7; 95% CI = ?1.4 to ?.1; d = ?.52, p = .020), despite family responsibilities (?1.0; 95% CI = ?1.7 to ?.3; d = ?.62, p = .005) and when PA is boring (?.8; 95% CI = ?1.4 to ?.1; d = ?.54, p = .016).

Conclusion: UCAN had negative effects on motivational variables in cancer survivors. These findings may be explained by methodological issues related to measuring motivation and/or the absence of post-intentional constructs.     

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.     

The perceptions of the causes of cardiac diseases: a taxonomy

Objective: This study verifies whether the open-ended question of the B-IPQ can collect causal attributions of patients with cardiac diseases, define the more frequent causal attributions reported, classify them and describe the relation between the classification of the causes and patients’ characteristics.

Design: A group of 2011 patients with cardiac diseases was recruited during the first week of cardiac rehabilitation.

Primary outcome measures: Every participant filled in the B-IPQ and the HADS. The qualitative and quantitative analyses of the text using T-LAB identified the most frequent causal attributions and their co-occurrences.

Results: Among the patients, 26% did not recognise any causal attribution. The likelihood that the patients did not provide an answer was increased in older patients, females, patients with lower levels of education and higher levels of depression. Smoking and stress emerged as the most important attributions, followed by genetics, metabolic syndrome, work and nutrition. Four thematic clusters were identified: ‘work and stress’, ‘metabolic syndrome and hypertension’, ‘displeasures and body care’ and ‘heredity and other related diseases’.

Conclusions: This study suggests a classification of the causal attributions in patients with cardiac diseases and identifies thematic patterns and unknown attributions. The themes identified can serve as categories for future closed-ended questions.     

The Cohen–Hoberman inventory of physical symptoms: Factor structure,and preliminary tests of reliability and validity in the general population

Objective: The present study aimed to investigate the factor structure and psychometric properties of the Cohen–Hoberman inventory of physical symptoms (CHIPS). Construct and discriminant validity were examined by assessing associations between factors and subjective health complaints (SHC) inventory subscales in addition to measures of pain sensitivity, perceived stress and psychological distress.

Design: A cross-sectional online survey was conducted with 535 healthy individuals from the general population (80.6% female, mean age = 29.80).

Main outcome measures: Participants completed CHIPS, SHC, perceived stress scale, pain sensitivity questionnaire, and hospital anxiety and depression scale.

Results: Principal components analysis demonstrated that CHIPS comprised 8 ‘symptoms’ factors as follows; ‘sympathetic/cardiac’ (7 items; α = .827), ‘muscular’ (6 items; α = .752), ‘metabolic’ (5 items; α = .736), ‘gastrointestinal’ (5 items; α = .714), ‘vasovagal’ (4 items; α = .743), ‘cold/flu’ (2 items; α = .837), ‘headache’ (2 items; α = .690) and ‘minor haemorrhagic’ (2 items; α = .309). Significant correlations were observed between factors and SHC subscales (moderate-high), pain sensitivity (negligible-low) and levels of perceived stress and anxiety (low-moderate) indicating good construct, and discriminant validity, respectively.

Conclusions: CHIPS is a multidimensional and internally consistent measurement of physical symptoms. The postulated factor structure may be used for research purposes particularly in health psychology, to consistently differentiate between clusters of self-reported symptoms.     

An illness-specific version of the Revised Illness Perception Questionnaire in patients with atrial fibrillation (AF IPQ-R): Unpacking beliefs about treatment control,personal control and symptom triggers

Objective: This study modified the Revised Illness Perception Questionnaire (IPQ-R) in patients with persistent atrial fibrillation (AF).

Design: Qualitative interviews and think-aloud techniques informed modification of the IPQ-R to be specific to AF patients. Confirmatory Factor Analysis (CFA) (n = 198) examined the validity of the modified IPQ-R (AF-IPQ-R). Exploratory factor analysis (EFA) examined the new AF-triggers scale. Construct validity examined associations between the AF-IPQ-R, quality of life (QoL) and beliefs about medicines. Test–retest and internal reliability were examined.

Results: Interviews indicated that patients viewed triggers of AF rather than initial causes of illness as more applicable. Patients believed specific behaviours such as rest could control AF. Treatment control beliefs related to pharmacological and procedural treatments. These data were used to modify the IPQ-R subscales and to develop a triggers of AF scale. CFA indicated good model fit. EFA of the triggers scale indicated three factors: emotional; health behaviours; and over-exertion triggers. Expected correlations were found between the AF-IPQ-R, QoL and treatment beliefs, evidencing good construct validity.

Conclusion: The AF-IPQ-R showed sound psychometric properties. It provides more detailed specification than the IPQ-R of beliefs that may help to understand poor QoL in AF patients, and guidance for future interventions in this area.     

Health anxiety and hypochondriasis in the light of DSM-5

Background: In the DSM-5, the diagnosis of hypochondriasis was replaced by two new diagnositic entities: somatic symptom disorder (SSD) and illness anxiety disorder (IAD). Both diagnoses share high health anxiety as a common criterion, but additonal somatic symptoms are only required for SSD but not IAD. Design: Our aim was to provide empirical evidence for the validity of these new diagnoses using data from a case–control study of highly health-anxious (n = 96), depressed (n = 52), and healthy (n = 52) individuals. Results: The individuals originally diagnosed as DSM-IV hypochondriasis predominantly met criteria for SSD (74%) and rarely for IAD (26%). Individuals with SSD were more impaired, had more often comorbid panic and generalized anxiety disorders, and had more medical consultations as those with IAD. Yet, no significant differences were found between SSD and IAD with regard to levels of health anxiety, other hypochondriacial characteristics, illness behavior, somatic symptom attributions, and physical concerns, whereas both groups differed significantly from clinical and healthy controls in all of these variables. Conclusion: These results do not support the proposed splitting of health anxiety/hypochondriasis into two diagnoses. Further validation studies with larger samples and additional control groups are warranted to prove the validity of the new diagnoses.     

Spiritual Inquiry and Well-Being in Life-Limiting Illness

ABSTRACT

Introduction: End of life, as a developmental phase, is accompanied by inner resources as well as losses. Spirituality is a potential inner resource for integrating illness that often occurs during this time. Despite the increase in spirituality research, how spiritual perspectives are used in life-limiting illness remains under-investigated. Better knowledge about this process may be useful for health care providers, family caregivers and patients themselves to enhance well-being at end of life. This study describes the process of how patients and family care-givers use their spiritual resources to facilitate well-being at the end of life.

Method: A qualitative study was designed, based upon the grounded theory method, that entails theoretical sampling of concepts (not sampling of people as in quantitative designs), and the analytic technique of constant comparison of the data until conceptual categories are saturated with supporting data and a theory can be identified. The sample consisted of 12 respondents: 6 dyads of elderly patients with a life-limiting illness and family caregivers. Interviews occurred over a 2-year period.

Results: Data analysis generated a theory about a process called “transcending life-limiting illness,” which derived from two related themes: spiritual inquiry and end-of-life dimensions.

Conclusion: The results expand existing knowledge about how people, either as patients or as family caregivers of persons facing end of life, live with life-limiting illness. The process of transcending life-limiting illness goes beyond merely coping to tap resources for well-being. This resource is expressed through an ongoing dialectic process of spiritual inquiry about life and death as supported by six critical life dimensions.