Review article
Using the Illness Intrusiveness Ratings Scale to understand health-related quality of life in chronic disease

https://doi.org/10.1016/j.jpsychores.2009.05.006Get rights and content

Abstract

Objective

Illness intrusiveness is a common, underlying determinant of quality of life in people affected by chronic disease. Illness intrusiveness results from disease- and treatment-induced disruptions to lifestyles, activities, and interests (i.e., interference with psychologically meaningful activity). This paper introduces the Illness Intrusiveness Ratings Scale (IIRS), a 13-item, self-report instrument. The IIRS can be scored to generate a total score or three subscale scores: relationships and personal development, intimacy, and instrumental. In addition to describing the IIRS, the paper presents the theoretical framework in which it is anchored, reviews the evidence, and reports psychometric properties.

Methods

Qualitative literature review.

Results

Findings support the IIRS's reliability (internal consistency and test–retest), validity (construct, criterion-related, and discriminant), sensitivity to change, and factorial invariance across numerous chronic-disease groups. The paper reports IIRS reliability coefficients and normative statistics for 36 chronic, medical and psychiatric patient populations.

Conclusion

The IIRS taps the extent to which disease- and treatment-related factors interfere with psychologically meaningful activity among people affected by chronic disease. It provides a valid, reliable measure that is easy to administer and unequivocally interpretable rendering it suitable for research designed to estimate the psychosocial impact of chronic disease and to document (and compare) the effectiveness of therapeutic interventions.

Section snippets

Illness intrusiveness and the psychosocial impact of disease

Chronic, disabling, and/or life-threatening conditions introduce significant adaptive challenges and coping demands. Most common are aversive symptoms, pain, physical discomfort, disability, dysfunction, the need to relinquish involvements in paid employment, economic hardship, financial strain, reduced participation in leisure activities, complex medical regimens, unpleasant treatments and powerful side effects, dependencies on medical technologies and personnel, and the threat of death.

Measuring illness intrusiveness

The Illness Intrusiveness Ratings Scale (IIRS; see Appendix A) is a brief, self-report instrument. It was developed for people affected by chronic disabling and/or life-threatening diseases but can be administered to those with less severe conditions. Although initially developed for people affected by end-stage renal disease (ESRD) [45], the IIRS has been employed in numerous physical-disease populations [21], [22], [24], [25], [41], [54], [55], [69], [80], [87], [89], [90], [91], [92]. It is

Reliability

IIRS total and subscale scores are highly consistent. Research, to date, has examined both internal consistency and test–retest reliability. Internal consistency for IIRS total scores ranges from the .80's to the .90's (with one exception, .78 for prostate cancer). Table 1 reports internal consistency reliability findings (α coefficient) for 36 chronic disease groups. These are taken from data sets in which the IIRS was employed in a variety of research applications.1

Validity

Illness intrusiveness is a hypothetical construct and, thus, construct validity is of paramount importance. Although it is measured by self-report and reflects a molar construct—that is, the sum of disease- and treatment-induced disruptions to lifestyles, activities, and interests—illness intrusiveness is conceptualized as a facet of the situation imposed by disease. Because the concept is anchored in an underlying theoretical framework, all research in which the IIRS is employed bears both on

Sensitivity to change

Many research applications involve evaluations of treatments to preserve quality of life among people after the completion of treatment or who must live with chronic, ill health. It is crucial, therefore, that measures relevant to this objective be sensitive to change. Although the number of studies to date is comparatively small, evidence is encouraging that the IIRS is, indeed, sensitive to change. IIRS scores decrease significantly following (a) surgery for hyperhidrosis [55]; (b) hip

Interpreting IIRS scores

Like most psychological constructs, illness intrusiveness has no absolute meaning. Meaning must be attributed by reference to independent entities or events. The fact that illness intrusiveness is a relative concept adds to the challenge: illness intrusiveness entails the extent to which disease and/or treatment interfere with ongoing lifestyles, activities, or interests. The most common strategy to interpret such effects involves drawing inferences based on comparisons either (a) between

Future directions

As noted, interpretation of the IIRS remains a challenge. Although scores can be interpreted unambiguously within groups (e.g., in testing hypotheses about HRQOL determinants or comparing alternative treatments), the interpretation in terms of clinical significance (e.g., severity of lifestyle disruptions within an individual or comparisons between respondents or groups) would benefit from the availability of representative norms. Such an exercise requires large, representative samples of

Conclusion

The Illness Intrusiveness Ratings Scale provides a simple, direct measure of the extent to which disease and/or treatment interfere with lifestyles, activities, and interests. Because it focuses directly on the disruptions attributable to disease and treatment, and avoids reference to their psychosocial or other effects, the scale can be interpreted directly and unequivocally as tapping a powerful stressor that threatens quality of life. The IIRS boasts strong psychometric properties (see Table

Acknowledgments

The preparation of this paper was supported by a research grant from the Canadian Institutes of Health Research.

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