| The underlying premise of this study was that the prolonged nature of chronic critical illness is associated with multiple, influencing factors that cause a diffuse, nonspecific symptom experience that is difficult to assess and treat. Thus, the purpose of this study was to gain a better understanding of symptom burden and its relationship to functional status in the post-discharge experience of the chronically critically ill (CCI) with the ultimate goal of improving palliative care for a population with exceptionally poor outcomes.; A descriptive, predictive design was used in this secondary analysis of a preexisting data base in the CCI. Responses to the question, "what symptoms are most bothersome at this time?" were analyzed to determine symptom burden. This question allowed patients and their proxies to use their "own words" in reporting bothersome symptoms. From the patients in the parent study who received a 2 month disease management intervention, 56% (129) were able to self-report symptoms, 28% (65) required proxy reporting of symptoms, and 16% (37) had no symptom reports available.; Overall, symptom prevalence was high as 95% reported one or more symptom. Eleven categories of symptoms emerged from analysis of the raw data. Pain was the most prevalent in both the patient self-responder and the proxy responder group. Generally, patients self reported burden related to physical symptoms such as pain, fatigue, and respiratory discomfort as compared to proxies who perceived burden in the CCI patient due to cognitive impairment, communication distress, and loss of independence.; The model of symptom burden, when controlling for age, gender, ethnicity, number of preexisting conditions, preadmission health status and length of stay, predicted 18.3% of the variance in functional status at 2 months (adj R2 = ,181 F = 4.26; p = < .001). Symptom burden did not make a significant contribution to the model.; Study limitations included selection bias and effects of proxy reporting on reliability and validity of study findings. More study is needed to identify the degree and meaning of symptom burden in the CCI and its relationship to functional status and other outcomes in order to facilitate effective management and comfort. |
