A systematic review of illness representation clusters in chronic conditions

Abstract

A person's beliefs about their chronic condition (illness representations) influence health and treatment outcomes. Recently, researchers have used clustering approaches to identify subgroups with different patterns of beliefs about their illness, with some subgroups having more favorable health outcomes than others. To date, these findings have not been synthesized. The purpose of this systematic review of the literature was to synthesize results of studies that used clustering approaches to analyze illness representation in chronic disease populations, in order to characterize the clusters and their relationship to health outcomes. Using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines we searched CINAHL, PsycInfo, and PubMed. To be included, studies had to be (a) peer reviewed, (b) in English, (c) performing a cluster analysis (CA), latent class analysis (LCA), or latent profile analysis (LPA), (d) using only illness representation (IR) subscales to form clusters, (e) measuring illness representation with the Illness Perception Questionnaire (IPQ-R), (f) in a chronic condition sample, and (g) measuring health-related outcomes. Twelve studies were included. Across studies, the number of clusters found ranged from two to three. In all studies, an association was found between illness representation group and at least one of their health outcomes. Illness representation clusters associated with favorable outcomes usually included lower disease-related consequences, fewer symptoms, less negative emotion, and a more stable disease pattern. The results of this review indicate that the relationship between the patterns of the illness representation profiles and health outcomes transcend diseases. Additionally, some dimensions of illness representation may be more important drivers of group membership than others. K E Y W O R D S chronic condition, cluster analysis, illness perception, illness representation, systematic review

Atrial fibrillation, quality of life and distress: a cluster analysis of cognitive and behavioural responses

“…Our results are also consistent with recent systematic review evidence which found significant relationships between illness representation schemata and health related outcomes in chronic illnesses [16]. Norton et al [14] found two illness representation clusters in patients with rheumatoid arthritis, consisting of negative (high illness identity, consequences and chronic and cyclic timeline) and positive representations of illness, with negative cluster membership associated with high levels of pain, functional disability and distress.…”

“…While previous research has indicated that personal control is associated with more positive outcomes in people with chronic health conditions [15,16,19], in this study high personal control beliefs clustered with other more negative illness beliefs (Cluster 2). In the context of AF, higher personal control beliefs may be reflective of beliefs that AF is cyclic and that repeated behavioural and lifestyle modifications, reflected by high scores for this group on health-behaviour triggers, can prevent AF symptoms.…”

“…Similarly, cluster membership predicted 21% of the variance in depressive symptoms at diagnosis and 11% after 6 months. These studies indicate that illness schemas may help to profile patients most at risk of negative outcomes such as distress and poor QoL [13,16].…”

Illness perception and health care use in individuals with irritable bowel syndrome: results from an online survey

“…They distinguish emotional and cognitive representations, the latter including beliefs about causes, consequences, timeline, and controllability of the condition [ 12 ]. In some publications the term illness perception means one dimension of illness representation (among others) [ 13 ], but others [ 14 ] used illness perception and illness representation as a synonym – just like we will do in this paper.…”

Illness Representation and Self-Efficacy: An Exploration of Fatigue Factors in Middle-Aged Stroke Survivors

“…A long-term follow-up study has shown that such cognitive appraisal has an impact on both patient and informal caregivers in terms of physical and mental health (Wu et al, 2015). Rivera et al (2020) recommend that healthcare providers should understand the patient's illness representation and beliefs to track their impact on disease response and its consequences.…”