Demographic and condition-specific factors influencing how symptoms are experienced over time: results of the MOMENT study

Type of funding sources: Private grant(s) and/or Sponsorship. Main funding source(s): Australian Catholic University

Adults with chronic illness (e.g., heart disease, diabetes) commonly experience intractable symptoms. The response to symptoms is often delayed until hospitalization is required. Acute symptoms prompt treatment-seeking, but variability in severity and bothersomeness of chronic symptoms may contribute to a delay in response.

The purpose of this study was to describe symptom severity, bothersomeness, and variability over time and how explore these differ by demographic and clinical groups.

We conducted a longitudinal observational study, consenting and enrolling a convenience sample of adults ≥ 18 years with one or more symptomatic chronic conditions living in Italy, the Netherlands, Sweden, or the United States. Recruitment was done through social media. Inclusion criteria were ≥ 3 months experience with heart failure (HF), diabetes mellitus (DM), arthritis, asthma, and/or chronic obstructive pulmonary disease (COPD) and experiencing symptom(s) ≥ 3 times weekly. Symptoms characteristics were assessed twice daily on smartphones using ecological daily assessment methods to minimize recall bias. Data were analyzed using descriptive statistics, and Cohen’s d as an effect size when not significant.

Eighty people completed the study. Most participants were middle-aged, female, and well-educated. Most lived in the EU. Variability in symptom severity and bothersomeness over time were strongly associated (r = 0.62, p<0.001) but this variability was not associated with either average symptom severity or bothersomeness (all p>0.05). There was a significant association between age and variability in symptom bothersomeness, with less variability and more stability in symptom bothersomeness over time as age increased (r = -0.29, p = 0.011). Women had lower average symptom severity and average bothersomeness than men (d = 0.33), but the differences were not significant. Comparing respondents with and without various conditions, in HF, there was a slight but non-significant difference in variability in symptom bothersomeness over time (d = 0.55). In DM, average symptom severity over time was less in persons with DM (t=-2.0, p = 0.024). Average symptom bothersomeness over time was less in DM (t=2.2, p = 0.007). In asthma, variability in symptom severity was greater over time (t=2.3, p = 0.012). In COPD, average symptom bothersomeness over time was greater (t=3.2, p = 0.001), variability in symptom bothersomeness over time was less (t=-1.9, p = 0.034), and the average symptom severity over time was greater (t=3.7, p<0.001). In arthritis, bothersomeness was higher and there was a slight but non-significant difference in average bothersomeness over time (d = -0.44).

There are both demographic (age, gender) and condition-specific factors that influence how symptoms are experienced over time in adults with chronic illness. Understanding of these patterns can be useful in designing interventions for chronic illness groups.