Symptom burden in individuals with inflammatory bowel disease: a mixed methods study

To investigate the symptom burden experiences of individuals with inflammatory bowel disease (IBD). An explanatory sequential mixed methods study was conducted. A cross-sectional, correlational survey was first undertaken. Symptom burden was measured using a modified disease specific version of the Memorial Symptom Assessment Scale, which was administered to a consecutive sample of individuals with IBD (n = 247) at an IBD Outpatients department in one urban teaching hospital in Ireland. Disease activity was determined using clinical disease activity indices, which were completed by the consulting physician. A sequential qualitative, descriptive study was then conducted aimed at explaining noteworthy quantitative findings. A criterion-related purposeful sample of seven participants from the quantitative study was recruited. Semi-structured face to face interviews were conducted using an interview guide and data were analysed using content analysis. Findings revealed that participants experienced a median of 10 symptoms during the last week, however as many as 16 symptoms were experienced during active disease. The most burdensome symptoms were lack of energy, bowel urgency, diarrhoea, feeling bloated, flatulence and worry. Total symptom burden was found to be low with a mean score of 0.56 identified out of a possible range from 0 to 4. Participants with active disease (M = 0.81, SD = 0.48; n = 68) had almost double mean total symptom burden scores than participants with inactive disease (M = 0.46, SD = 0.43; n = 166) (p < 0.001). Mean total psychological symptom burden was found to be significantly greater than mean total physical symptom burden (rho = 0.73, n = 247, p < 0.001). Self-reported disease control, gender, number of flare ups in the last two years, and smoking status was found to be significant predictors of total symptom burden, with self-reported disease control identified as the strongest predictor. Qualitative data revealed tiredness, pain, bowel symptoms, worry and fear as being burdensome. Furthermore, symptom burden experiences were described in terms of its impact on restricting aspects of daily activities, which accumulated into restrictions on general life events. Psychological symptom burden was revealed as more problematic than physical symptom burden due to its constant nature, with physical and psychological symptoms described to occur in a cyclical manner. Participants revealed that disease control was evaluated not only in terms of symptoms, but also in terms of their abilities to control the impact of symptoms on their lives. This study highlights the considerable number of symptoms and the most burdensome symptoms experienced by individuals with IBD, both during active and inactive disease. This study has important implications on symptom assessment in terms of the need to encompass both physical and psychological symptoms. In addition, greater attention needs to be placed on psychological aspects of IBD care.

Symptom burden and its relationship to functional performance in patients with chronic obstructive pulmonary disease

The aim of this study was to explore symptom burden and its relationship to functional performance in patients with COPD. A descriptive, cross-sectional, correlational survey design was used and a sample of 214 patients with COPD. The sample was recruited from patients attending one of the major teaching hospitals in Dublin. Symptom burden was measured using the Memorial Symptom Assessment Scale (MSAS), and the functional performance was measured using the Functional Performance Inventory-Short Form (FPISF). Findings revealed that participants experienced a median of 13 symptoms. The most burdensome symptoms were shortness of breath, lack of energy, difficulty sleeping, worrying, dry mouth, feeling nervous, feeling irritable, and feeling sad. Participants with very severe COPD had the greatest symptom burden, followed by those with severe COPD, moderate COPD, and mild COPD. Symptom burden was higher for the psychological symptoms compared to the physical symptoms. Participants with mild COPD had the highest functional performance, followed by those with moderate COPD, very severe COPD, and severe COPD. Twenty symptoms were negatively correlated with overall functional performance, indicating that high symptom burden for those symptoms was associated with low overall functional performance. Moderate, negative, statistically significant correlations were found between the total symptom burden and overall functional performance, physical symptom burden and overall functional performance and psychological symptom burden and overall functional performance. A negative linear relationship was found between total symptom burden and overall functional performance among all stages of COPD except the mild group. No relationship was found between total symptom burden and overall functional performance for the moderate group. Healthcare professionals need to broaden the clinical and research assessment of physical and psychological symptoms in COPD; alleviating the burden of these symptoms may promote improved functional performance.