Invited commentary on Jopson and Moss-Morris (2002)

For the most part, medical patients do not cope with their symptoms and diagnosis; they cope with how they construe their symptoms and diagnosis. Accordingly, dozens of studies document associations between psychological adjustment and a veritable laundry list of multiple sclerosis characteristics. Recognizing that the sheer diversity of multiple sclerosis presentation limits the usefulness of this approach, Jopson and Moss-Morris [1] took an original, intriguing approach to this problem. They asked, ‘‘What do patients with multiple sclerosis actually think about their diverse changing symptoms? And. . .do their beliefs relate to their outcomes?’’ The investigators grounded their inquiry in H. Leventhal’s concept of ‘‘illness representations,’’ which specifies how patients actively organize and conceptualize (i.e., ‘‘represent’’) their symptoms. Theoretically, illness representations should heavily influence outcomes such as emotional adjustment, help-seeking, regimen adherence, self-treatment, activity level, and broad life goals. The researchers posed several interesting hypotheses about how specific representations relate to specific types of adaptation. The findings revealed that, while illness severity was related to physical and role impairment, representations were related to fatigue as well as social-emotional impairment across a number of areas, even after removing variance related to illness severity and significant demographic covariates. Thus, it seems that patient beliefs about illness are a vital and independent determinant of adjustment. Probably, the most important implication is this: if illness representations are linked with outcomes, then unhelpful beliefs about symptoms can potentially be identified and therapeutically corrected. The Jopson and Moss-Morris approach contrasts with the coping response paradigm [2], which has dominated research on adjustment to chronic illness. Results suggest that illness beliefs (and interventions to alter dysfunctional illness beliefs) could be more important than a primary focus upon coping responses. A secondary interpretation is that one particular coping response called ‘‘cognitive reappraisal’’ might be a critical mediator of adjustment in multiple sclerosis. The authors incorporated the unique methodological feature of a quantitative self-report representations measure. In fact, Dr. Moss-Morris and her colleagues actually developed, validated, and revised this measure. Because of this innovation, the findings compliment prior qualitative findings by adding to the growing representations-by-illness database. Although qualitative approaches probably elicit richer information, they also: (a) require considerable training, (b) may produce study-specific findings, and (c) can be infeasible for large-sample studies. Quantitative measurement of representations may be the most feasible way to test theoretically driven hypotheses, as well as to reliably assess these constructs in clinical samples. The sampling strategy is another study strength. Because most multiple sclerosis researchers are based in specialty clinics, research subjects have tended to be multiple sclerosis clinic attenders. Clinic attenders may not be representative of the majority of multiple sclerosis patients seen in primary care or other settings. Jopson and Moss-Morris have departed from this pattern by recruiting through their local Multiple Sclerosis Society chapter. On the other hand, Multiple Sclerosis Society members may also differ systematically from the average person with multiple sclerosis. The fatigue-related findings are also particularly important. Fatigue is a prevalent and vexing clinical issue in multiple sclerosis. Outside of multiple sclerosis, fatigue is a legitimate freestanding area of inquiry. Findings indicated that physical and mental fatigue actually operate very differently. These findings emerged only because representations measure differentiate between control by self and by treatment, and because the authors astutely chose a multidimensional fatigue measure. Specifically, it seems as though mental fatigue in particular may result from feeling that one controls one’s illness course. This suggests that investing faith in medical treatment rather than oneself might substantially lighten the coping burden, although