Suffering Can Be Measured: Some Data From A Self-Report Scale

Two groups of researchers (from the University of Lubeck and from University of Sydney) report on a novel method of measuring the experience of suffering in the January issue of Psychotherapy and Psychosomatics.

Measuring the impact of illness is important for several reasons. The Pictorial Representation of Illness and Self Measure (PRISM) is a recently developed tool purported to assess burden of suffering due to illness. The nature of the PRISM task suggests a conceptual link to the illness self-schema construct hypothesised to be present in some individuals with chronic illness.

The aim of the first study was to introduce a self-administered version of PRISM and to provide some first data on its validity. A postal survey was conducted in subjects with the chronic depigmentation disorder vitiligo. Data of 333 respondents completing the PRISM were used for analysis. Besides illness-related measures, psychological variables were assessed with the following instruments: Satisfaction with Life Scale (SWLS), five-item version of the Mental Health Inventory, adaptation of the Skindex-29, a quality-of-life measure for skin diseases. Self-illness separation correlated as predicted with some illness-related variables.

The distance was significantly larger in subjects whose depigmentation was no longer spreading. Significant correlations were also found with mental health (0.50), satisfaction with life (-0.28), perceived impairment of outward appearance (-0.65), and the Skindex subscales ’emotions’ (-0.66) and ’functioning’ (-0.67). These data suggest that PRISM can be self-administered. Measures of convergent validity confirm the usefulness of the new measure.

In another study the relationship between PRISM and schema as measured by cognitive bias was investigated in 43 patients with systemic lupus erythematosus (SLE) who completed the PRISM and an information-processing task involving endorsement of positive and negative illness words as descriptors of themselves, followed by free recall of the words. The outcome measures were endorsement and recall bias for negative illness words. Patients were also assessed on other physical and psychological variables. PRISM did not correlate significantly with age, depression, functional impairment or disease activity.

In a multiple regression analysis, only recall bias made an independent contribution to PRISM. Illness self-schema appears to play a significant role in determining the way in which SLE patients complete the PRISM task. This is discussed in light of a schema enmeshment model recently proposed in the cognitive bias literature.