In this cohort of community-dwelling older persons with advanced COPD and HF followed for up to 2 years, the prevalence of both symptoms considered to be disease specific, such as shortness of breath, and symptoms not considered to be disease specific, such as pain and physical discomfort, was extremely high among both those who lived and those who died. Although the prevalence of certain symptoms increased over time, many symptoms were as highly prevalent at the beginning as at the end of the study period. Both disease-specific and non–disease-specific symptoms increased in severity over time.
We previously reported the burden of symptoms in this cohort of persons with advanced disease as assessed at the time of participants’ enrollment into the study.7
This prior cross-sectional analysis showed that the symptom burden was high, but the full nature of patients’ experience with symptoms could be delineated only by following participants over time. Because the eligibility criteria for participation are associated with limited life expectancy, we could not know at the beginning of the study that we had in fact enrolled a heterogeneous group of patients in terms of where they were in the trajectory of their illness. The findings that the prevalence of symptoms did not differ according to whether the patient died and that many of the symptoms were as highly prevalent at the start of the study as at a point 2 years later in the course of the patient’s illness highlight the conclusion that the experience of a diverse range of symptoms is not limited to those patients who are at the end of their lives but rather is a part of patients’ disease course over longer periods of time.
There are at least 2 explanations for the range of symptoms experienced by this cohort. One is that COPD and HF produce a broader range of symptoms than presently addressed in disease management guidelines, and the second is that the symptoms are a result of participants’ multiple coexisting conditions. It is likely that both explanations contributed to the symptom burden of participants in this study. Prior cross-sectional studies of persons with COPD7
have demonstrated that these individuals experience many symptoms in addition to the dyspnea and cough that are the focus of guidelines, including depression, anxiety, and fatigue. Although the association between number of comorbidities and total symptom burden among persons with HF did not reach statistical significance, the present study provides preliminary evidence for a relationship between comorbidities and symptoms.
It could be argued, given the association between time and increasing total symptom burden, that symptoms are an inevitable part of the disease process and progression. However, each of the symptoms examined is potentially modifiable. Prior progress in the recognition and treatment of symptoms effectively illustrates the improvements that can be achieved through the use of targeted interventions. In the case of pain, for example, consensus-based guidelines outline approaches to treatment19
that can effectively relieve the pain of most patients with cancer.20
Although a substantial proportion of patients with cancer continue to experience pain, the principle guiding responses to this finding is that pain represents an unmet need rather than an inevitable and untreatable part of the disease. Research has focused on determining modifiable barriers to effective pain management, including inadequate pain assessment and treatment,21
and interventions providing standardized approaches to assessment and treatment have been shown to improve cancer pain control.22
Although currently there are fewer effective therapeutic options for symptoms other than pain for patients with noncancer diagnoses, this lack of interventions may reflect the inadequate attention paid to developing therapies for these symptoms23
rather than the impossibility of treating these symptoms. One small study24
demonstrated the effectiveness of a consultative team providing formal symptom assessment and intervention in reducing shortness of breath and anxiety among patients with advanced HF, COPD, and cancer. In addition, the finding that symptoms tend to occur in clusters suggests that successful treatment of one symptom may also help to improve additional symptoms.25
Taken together, such findings argue that the symptom burden demonstrated in this population is a measure of participants’ unmet need for improved symptom control.
There are several limitations related to the study population and its measures. Our ability to detect meaningful differences in symptom prevalence and severity may have been limited by our small sample size, despite using repeated measures. In addition, the small number of non-white participants enrolled may limit the generalizability of our results. Moreover, the ascertainment of comorbidities did not include those illnesses that, although they may not be highly associated with mortality, may be highly symptomatic, such as osteoarthritis. When such diseases have been included in prior studies, the burden of comorbidity was higher than what is described in the current study.8
This may have limited our ability to detect an association between comorbidities and symptom burden.
The results of this study, demonstrating that large proportions of patients with COPD and HF have a broad range of symptoms over an extended time period, suggest that current individual disease management guidelines, which include only a narrow range of symptoms except for persons at the end of life, may not be sufficient to address this symptom burden. Symptoms provide an integrated, clinically relevant measure of a person’s health status as it is affected by multiple diseases and interventions. However, unless investigations include a range of symptoms, the associations between less-studied symptoms and health outcomes may not become apparent. We previously reported that physical discomfort and feelings of depression were associated with important health outcomes, namely, self-rated health, functional disability, and quality of life.1
Thus, physicians may need to adopt an expanded treatment approach to achieve improved symptom palliation for persons with chronic disease. Moreover, further research is warranted to determine the effect of interventions designed to address a wider range of symptoms on health outcomes for persons with COPD and HF.
The broad range of symptoms experienced by older patients with HF and COPD over an extended period of time calls for a research agenda to determine modifiable barriers to effective symptom management in chronic disease. Modeled on the research performed among patients with cancer, this agenda would include investigation of the frequency and nature of symptom assessment among older persons with chronic disease, use of existing strategies to address symptoms, and development of new strategies. Concomitant with this effort, utilization of the existing evidence for effective assessment and treatment of symptoms needs to become an integral component of the care of all older persons with chronic diseases.