Overwhelmed, Stable, or Confident: Self-Perceptions of Chronic Disease

Chronic diseases are managed rather than cured. Every person who is diagnosed with a chronic disease understands it in a different way. Two people with the same disease may have a different experience of their illness, different feelings about health, or a different family history with the disease. We know that these self- perceptions (called illness representation) have an impact on patient health and behavior.

In a study in Geriatrics, my colleagues and I measured illness representation in nearly 200 outpatients with heart failure, kidney disease, and chronic obstructive pulmonary disease (COPD). We used their responses to create three distinct group “profiles” and examined three outcomes in each group: self-care confidence, hospitalizations in the past year, and emergency room (ER) visits in the past year. The groups did not differ by age or gender, and were consistent across diseases.

• The first group was not surprising: people who had an overall negative view of how their disease was going, lacked confidence in their ability to care for themselves, and had a lot of disease complications. They also were hospitalized more often in the previous year.  We labeled this group “overwhelmed”. 
• The second group was also not very surprising: they had a fairly positive view of their disease, were positive about their ability to care for themselves, had fewer disease complications, and had been living with their disease for a longer period of time.  This group had fewer hospitalizations, and were labeled “stable”.
• The third group was the big surprise: they had the most positive view of their disease, had the highest confidence in their ability to care for themselves, but were hospitalized at the same high rate as the overwhelmed group. We labeled this group “confident”.

While our study could not assess whether illness representation was a cause or consequence of the outcomes, these results suggest that it is an important concept to consider when treating patients with chronic disease. If we want to target the group with higher hospitalizations, we need to be aware that it is not a homogenous group. Interventions designed to reduce hospitalizations in the chronic disease population are often unsuccessful or yield minimal results. This could be because the overwhelmed and confident groups, having fundamentally different perceptions of their illness, respond differently to the same messaging. 

Clinicians can easily assess a patient’s illness representation and integrate it into their plan of care. Future study can shed light on the effectiveness of targeted communication to each group and give us further direction for specific changes to clinical practice and policies to maximize the health of people living with chronic disease.